End of life Care in Nunavik, Quebec

Abstract

The aim of our study was to better understand the end of life (EOL) services offered in Nunavik and to identify whether there were ways to improve the quality of EOL care for patients and families. We interviewed patients and family members, healthcare providers, community members, and others who were involved in EOL care. Areas of inquiry included home care, hospital and health center care, communication, resources, and training. We sought input on how EOL care was provided, whether or not the services were accessible and comfortable for patients and their family members, and how EOL services provided by families, communities and health care providers could be supported.

Full text

A report written for the Nunavik Regional Board of Health
Shawn Renee Hordyk, PhD
Mary Ellen Macdonald, PhD
Paul Brassard, MD
March 2016

2
EOL CARE FOR INUIT IN NUNAVIK QUEBEC- Submitted March 2016
AUTHORS
Hordyk, Shawn-Renee, PhD, Postdoctoral research fellow
Brassard, Paul, MD, Primary investigator
Macdonald, Mary Ellen, PhD, Co-investigator
ACKNOWLEDGEMENTS/ COLLABORATIONS
We would like to express our sincere “thank you” to the many participants who have offered
their experiences and expertise concerning End of Life Care for Inuit in Nunavik. We hope that
we have accurately represented their professional experiences as well as personal stories and
insights. Any errors in the content or conclusions of this report are the sole responsibility of the
authors.
A special thank you to the four communities represented in this study and the many community
members who gave us their time and who invited us to taste the richness of community life in
Nunavik.
Our thanks are also extended to the following reviewers who provided feedback on select areas
of initial drafts of this report. Your input was much appreciated.
Martha Greig
Marie-Hélène Marchand
Fabien Pernet
Ida Saunders
Patrick Willemot
This research was funded by the Fonds de recherche du Québec Santé (2013-2015) and
conducted in collaboration with the Nunavik Regional Board of Health and with Serge Dumont,
PhD of the Université Laval au Québec.

3
EXECUTIVE SUMMARY:
End of life (EOL) care planning and policy for cancer patients, the chronically ill as well as the
elderly is becoming increasingly relevant for Inuit communities: community members are living
longer and experiencing an increase in rates of certain cancers and chronic disease (CPAC, 2014;
Wallace, 2014). Researchers have underlined the need to develop and validate conceptual plans
and policies for palliative care for Indigenous peoples in a “bottom-up” inclusive approach with
the community (Kelley, Williams, DeMiglio & Mettam, 2011). Studies have called for an
incorporation of the view of Indigenous elders in the planning and provision of EOL care
(Kalbfleisch, 2007) as the lack of Indigenous voices in EOL care remains a major issue (Loppie
& Wien, 2005). Such findings indicate a need for clear policies and guidelines to facilitate home
care and community EOL programs. Through questions and observations we sought to identify
the existing strengths and resources within Inuit communities as they provided EOL care to
community members. Focused ethnography allowed us to combine semi-structured interviews,
informal dialogues and participant observations in diverse communities to gather information.
Recognizing the expertise in the participants with whom we had spoken, we then solicited
individuals engaged in EOL care provision to review the interpretation of our findings.
We had conversations concerning EOL care for Nunavimmiut in the context of four Nunavik
communities, the Quebec Module du Nord and the McGill University Health Center. In 2014-
2015, 103 participants contributed to the study through recorded interviews and informal
dialogues specifically related to EOL care provision. Resultant themes included the following: a)
trajectories of patient care; b) the contexts of care, specifically, the challenges and variables to
care and recommendations to improve care; c) communication; d) the role of interpreters in EOL
care; d) considerations concerning Law 2; and e) bereavement and grief in EOL care.
Variables in CLSC care
Variables in family/community
care
Variables in hospital care
Relationship/communication
with patient/family
Psychosocial support:
functioning/
communication/coping skills
Clarity of communication
with patients and health
professionals
Access to palliative care
resources
Family level of
knowledge/preparedness
Involvement of liaison
nurses, interpreters, escorts,
family
Duration of care
Duration and intensity of care
Degree of cultural
awareness
Psychosocial support
Suitability of home
environment
Complexity of treatment
options
Capacity/preparedness of
family/community
Involvement of extended
family and community
Continuity of patient care
Amount of moral distress
Degree of trust in
nurse/physician/interpreter
Psychosocial state of
patients and caregivers
Investment of time and training
in Inuit health care providers
Existing responsibilities and
obligations
Displacement and
homesickness of patient

4
As indicated in the above table, the capacity to provide EOL care depends on a number of
intersecting variables in home, CLSC and hospital contexts. To address these variables in the
development of EOL care, Nunavimmiut and Qallunaat participants drew on professional
experiences to make recommendations that they believed would lead to a sustainable model for
EOL care for Nunavik patients. Several of these recommendations are linked to changes that are
already underway in communities and institutions; while others had not yet been implemented.
Most participants agreed that a combination of Inuit and Qallunaat areas of practice and expertise
is needed for developing EOL care in Nunavik. The Inuit communities appear to be at a
disadvantage, however, as their cultural and traditional expertise has largely gone unexamined
and thus has not been accorded the stamp of “evidence-based practice,” which is so necessary to
attain funding for program development and personnel. We conclude our report with several key
areas summarizing how to proceed in providing EOL care in Nunavik. These are summarized in
the table below:
Palliative care resources and training for nurses and physicians
Support for existing bereavement care initiatives in communities
Training and recognition of interpreters
Education in Law 2 and the Supreme Court decision
Home services and inpatient facilities for elders
Education in disease progression and EOL care
Psychosocial support services for patients and families through the
identification of existing cultural and spiritual practices
Nursing staff support in Nunavik and Montreal
Family education and respite services
The North and South gap: re-examining the public health approach
to EOL care
A sustainable approach to EOL care
12-24
months
1-12
months
2-10
years

5
Table of Contents
1.##PROJECT#OBJECTIVES#AND#RATIONALE#.................................................................................................#8!
2.##METHODOLOGY#..............................................................................................................................................#8!
3.##PORTRAIT#OF#PARTICIPANTS#....................................................................................................................#9!
"#$!%&'(')*!###############################################################################################################################################################################!+!
"#,!&%-.!')!/&%0'*'%)!%1!.%-!23&.!##################################################################################################################################!+!
4.##CONTEXTUAL#FACTORS:#NUNVIK#INUIT#...............................................................................................#11!
4#$!!5.6%(&3/7'2!2%)8.98:3-!1328%&*!######################################################################################################################!$$!
4#,!!(.%(&3/7'2!3)5!7'*8%&'2!2%)8.98:3-!1328%&*!##############################################################################################!$"!
4.2.1%Voluntary%migration%..............................................................................................................................................%13!
4.2.2%Settlement%and%displacement%............................................................................................................................%13!
4#"!*%2'3-!3)5!*/'&'8:3-!2%)8.98:3-!1328%&*!########################################################################################################!$;!
4.3.1%Spirituality%and%worldviews%...............................................................................................................................%15!
4.3.2%Caring%traditions%.....................................................................................................................................................%16!
4.3.3%Social%change%and%upheaval%...............................................................................................................................%17!
5.###TRAJECTORIES#OF#CARE#............................................................................................................................#18!
;#$!/%8.)8'3-!23&.!8&3<.28%&'.*!#################################################################################################################################!$=!
;#,!!23*.!*2.)3&'%!###############################################################################################################################################################!$+!
;#"!2%6/-'238'%)*!&.-38.5!8%!)%&87>*%:87!23&.!###############################################################################################!,$!
6.##FAMILY#AND#COMMUNITY#ORGANIZED#CARE#....................................................................................#22!
?#!$!!136'-@!3)5!2%66:)'8@!*.&0'2.*!##########################################################################################################################!,"!
6.1.1%Family%..........................................................................................................................................................................%23!
6.1.2%Home%environments%...............................................................................................................................................%23!
6.1.3%Women’s%auxiliary%..................................................................................................................................................%24!
?#,!273--.)(.*!3)5!03&'3A-.*!')!/&%0'5')(!2%66:)'8@!23&.!###########################################################################!,4!
6.2.1%Psychosocial%variables%in%family%care%provision%........................................................................................%25!
?#"!B738!23)!A.!5%).C!136'-@!3)5!2%66:)'8@!23&.!###########################################################################################!,D!
6.3.1%Psychosocial%services%.............................................................................................................................................%27!
6.3.2%Facilities:%Respite%care,%long%term%care%facilities,%mortuary%facilities%..............................................%28!
6.3.3%Communication%of%educational%materials%to%families%.............................................................................%30!
7.#NUNAVIK#INPATIENT#HEALTH#CENTERS#AND#OUTPATIENT#CARE#.............................................#30!
D#$!!')::-'8*'0'E!7.3-87!2.)8.&!##################################################################################################################################!"F!
D#,!8:-38830'E!7.3-87!2.)8.&!####################################################################################################################################!"$!
D#"!!8:*33<'3/'E!.-5.&G*!7%6.!########################################################################################################################################!"$!
D#4!273--.)(.*!3)5!03&'3A-.*!')!2-*2!')/38'.)8!3)5!%:8/38'.)8!23&.!######################################################!";!
7.4.1%Variables%for%nurses/physicians%.......................................................................................................................%35!
7.4.2%Variables%for%Inuit%professionals%in%providing%EOL%care:%......................................................................%37!
D#;!B738!23)!A.!5%).C!2-*2!23&.!###############################################################################################################################!"+!
7.5.1%Nurses/physicians%..................................................................................................................................................%39!
7.5.2%Inuit%professionals%..................................................................................................................................................%41!
8.#THE#MONTREAL#CONTEXT#OF#CARE#.......................................................................................................#41!
=#$!!.%-!23&.!132'-'8'.*!3)5!/&%0'5.&*H!####################################################################################################################!4$!
8.1.1%Pain%Management%Clinic%......................................................................................................................................%41!
8.1.2%Physical,%Psychosocial%and%Spiritual%care%....................................................................................................%42!
8.1.3%Paediatric%services:%%The%Northern%and%Native%Child%Health%Program%...........................................%42!
8.1.4%Module%du%Nord%Québec%(MNQ)........................................................................................................................%42!

6
8.1.5%Social%services%...........................................................................................................................................................%43!
8.1.6%Escort%services%..........................................................................................................................................................%43!
=#,!273--.)(.*!3)5!03&'3A-.*!')!/&%0'5')(!23&.!')!6%)8&.3-!#######################################################################!4"!
8.2.1%Challenges%for%patients%and%families%..............................................................................................................%43!
8.2.2%Challenges%for%health%care%providers%.............................................................................................................%44!
=#"!B738!23)!A.!5%).C!6%)8&.3-!23&.!####################################################################################################################!4;!
9.#COMMUNICATION#IN#EOL#CARE#................................................................................................................#46!
+#$!2%66:)'238'%)H!)%&87.&)!3)5!*%:87.&)!7.3-87!23&.!/&%0'5.&*!#######################################################!4D!
9.1.1%Challenges%in%North/South%communication%...............................................................................................%47!
9.1.2%Improving%communication%.................................................................................................................................%50!
+#,!!2%66:)'238'%)!B'87')!/38'.)8*G!136'-'.*!######################################################################################################!;$!
+#"!2%66:)'238'%)H!I3--:)338!/7@*'2'3)!3)5!):&*.!3)5!'):'8!/38'.)8>136'-@!####################################!;,!
9.3.1%Communication%challenges%of%physicians/nurses%.....................................................................................%52!
9.3.2%Communication%strategies%of%physicians%and%nurse%with%patients%and%families%.........................%57!
10.#THE#UNIQUE#ROLE#OF#INTERPRETERS#IN#COMMUNITY#CONTEXTS#..........................................#60!
$F#$!!273--.)(.*!')!')8.&/&.838'%)!###########################################################################################################################!?$!
10.1.1%Conflicts%....................................................................................................................................................................%61!
10.1.2%Close%relations%and%bad%news%..........................................................................................................................%61!
10.1.3%Linguistic%challenges%..........................................................................................................................................%62!
10.1.4%Confidentiality%.......................................................................................................................................................%62!
10.1.5%Staff%turnover%.........................................................................................................................................................%63!
10.1.6%Reliability%of%colleagues%.....................................................................................................................................%63!
$F#,!*8&38.('.*!:*.5!A@!')8.&/&.8.&*!8%!355&.**!<%A!*8&.**!##########################################################################!?"!
10.2.1%Strategies%re:%EOL%communication%...............................................................................................................%64!
10.2.2%Linguistic%strategies%............................................................................................................................................%66!
$F#"!!8&3')')(!)..5*!#########################################################################################################################################################!?D!
10.3.1%Linguistic%.................................................................................................................................................................%67!
10.3.2%Communication%.....................................................................................................................................................%67!
11.##CONSIDERATIONS#CONCERNING#BILL#52/LAW#2#...........................................................................#68!
$$#$!2%)8.98:3-!1328%&*!1%&!A'--!;,>-3B!,!')!):)30'E!##################################################################################!?+!
$$#,!!0'.B*!%)!/3--'38'0.!*.538'%)!3)5!6.5'23-!3'5!')!5@')(!##########################################################################!DF!
11.2.1%Medical%community%perspectives%on%the%implementation%of%Law%2%...............................................%70!
11.2.2%Inuit%community%on%Law%2%and%the%Supreme%Court%ruling%................................................................%72!
$$#"!B738!23)!A.!5%).C!-3B!,!#####################################################################################################################################!D4!
12.#BEREAVEMENT#AND#GRIEF#.....................................................................................................................#75!
$,#$!!(&'.0')(!3)5!5'3()%*'*!#########################################################################################################################################!D?!
!$,#,!(&'.1!:/%)!(&'.1!#######################################################################################################################################################!D?!
$,#"!A.-'.1*!3)5!/&328'2.*!&.(3&5')(!(&'.1!###########################################################################################################!D=!
12.3.1%Grief%in%nomadic%vs.%community%life%.............................................................................................................%79!
12.3.2%Grief%and%letting%go%of%the%deceased%.............................................................................................................%80!
$,#4!')*8'8:8'%)3-!3)5!2%66:)'8@!&./%)*.*!8%!5.387!######################################################################################!=$!
12.4.1%Grief%and%death%in%Montreal%............................................................................................................................%81!
12.4.2%Community%engagement%...................................................................................................................................%81!
12.4.3%Community/institutional%organized%initiatives%......................................................................................%82!
$,#;!'6/&%0')(!(&'.1!3)5!A.&.30.6.)8!23&.!#########################################################################################################!=4!
12.5.1%Incorporating%community%initiatives%in%care%...........................................................................................%84!
12.5.2.%%Bereavement%care%services%for%individuals%and%families%...................................................................%85!

7
13.##PROJECT#LIMITATIONS#............................................................................................................................#86!
14.##WHAT’S#NEXT?#............................................................................................................................................#87!
$4#$!87.!).98!$,!6%)87*!################################################################################################################################################!=D!
14.1.1%Palliative%care%resources%and%training%for%nurses%and%physicians%..................................................%87!
14.1.2%Education%in%Law%2%and%the%Supreme%Court%decision%...........................................................................%87!
14.1.2%Training%and%recognition%of%interpreters%..................................................................................................%88!
14.1.3%Support%for%existing%bereavement%care%initiatives%in%communities%...............................................%88!
14.1.4%Home%services%and%inpatient%facilities%for%elders%....................................................................................%88!
$4#,!!87.!1%--%B')(!$,J,4!6%)87*!############################################################################################################################!==!
14.2.1%Education%in%disease%progression%and%EOL%care%.....................................................................................%88!
14.2.2%Psychosocial%support%services%for%patients%and%families%through%the%identification%of%
existing%cultural%and%spiritual%practices%..................................................................................................................%88!
14.2.3%Nursing%staff%support%in%Nunavik%and%Montreal%....................................................................................%89!
14.2.4%Family%education%and%respite%services%........................................................................................................%89!
$4#"!!-%)(!8.&6!0'*'%)H!,J$F!@.3&*!#############################################################################################################################!=+!
14.3.1%The%North%and%South%gap:%re^examining%the%public%health%approach%to%EOL%care%.................%89!
14.3.2%A%sustainable%approach%to%EOL%care%............................................................................................................%90!
CONCLUSION:#EOL#CARE#IN#NUNAVIK#.........................................................................................................#91!
15.##FOR#FURTHER#CONSULTATION#............................................................................................................#93!
$;#$!!'):'8!7.3-87!3)5!5.6%(&3/7'2*!#######################################################################################################################!+"!
$;#,!!'):'8!2:-8:&.!3)5!7'*8%&@!###################################################################################################################################!+;!
$;#"!!/3--'38'0.!23&.!########################################################################################################################################################!+D!
$;#4!!23/32'8@!A:'-5')(K!/3&8'2'/38%&@!6.87%5%-%(@!########################################################################################!+D!
$;#;!!B.A*'8.*H!####################################################################################################################################################################!++!
16#APPENDIX#....................................................................................................................................................#100!
$?#$!3//.)5'9!3H!')8.&0'.B!(:'5.!#############################################################################################################################!$FF!
$?#!,!3//.)5'9!AH!2%)*.)8!1%&6*H!.)(-'*7K!1&.)27K!'):E8'8:8!#####################################################################!$$,!

8
1. PROJECT OBJECTIVES AND RATIONALE
#
The aim of our study was to better understand the EOL (EOL) services offered in Nunavik and to
identify whether there were ways to improve the quality of EOL care for patients and families.
We interviewed patients and family members, healthcare providers, community members, and
others who were involved in EOL care. Areas of inquiry included homecare, hospital and health
center care, communication, resources, and training. We sought input on how EOL care was
provided, whether or not the services were accessible and comfortable for patients and their
family members, and how EOL services provided by families, communities and health care
providers could be supported.
In April 2014, the Canadian Partnership Against Cancer (CPAC) published a document entitled
“Inuit Cancer Control in Canada, Baseline Report.” This document outlined the national picture
of Inuit patients and cancer, barriers in health care service delivery, and the patient experience of
care in the context of health care systems and communities. Information was obtained through
contractors, health care surveys and environmental scans. We have endeavoured to build on this
investigation in our study and to develop a nuanced understanding of the unique challenges and
strengths within Nunavik communities concerning EOL care for cancer patients, the chronically
ill as well as the elderly. #
2. METHODOLOGY
We considered several options in choosing how to best accomplish the above-mentioned
objectives. In light of the many cultural, geographical, historical and time considerations in both
community and institutional settings, we chose to conduct our study as follows:
Theoretical perspective:
A community capacity theoretical perspective was drawn upon to orient the questions of this
study (NSW Health Department, 2001; Simmons, Reynolds & Swinburn, 2011). Recognizing
that communities in Nunavik had been providing EOL care to family members in their homes
long before health care centers had been established in the Nunavik region, we furthered our
understanding of the measures that communities already had in place. We sought to verify what
kind of support communities were seeking from hospitals in the South and from health centers in
Nunavik concerning EOL care for family members, and to determine how ongoing
collaborations might build on the existing capacities of families and communities.
Method:
Focused ethnography (Knoblauch, 2005) was used as a means through which to gather
information. Information was attained through field visits, observations and structured and
unstructured dialogues. We contextualized what we had found with information from existing
health reports, video documentaries, newspapers such as Nunatsiaq online, books, art, museum
exhibitions, and academic articles. Between June 2014 and November 2015, we met with people
in health centers, homes, schools, municipal offices, churches, and community organizations.

9
We visited four Nunavik communities, two located on the Hudson coast and two on the Ungava
coast; visits ranged from 1-6 weeks with a total of 14 weeks onsite. We also conducted onsite
interviews with nurses, physicians, interpreters and spiritual advisors in Montreal. Some
participants agreed to have their interviews recorded; others deferred and so the interviewer took
notes based on the dialogue.
Data analysis and validation%
We performed a thematic analysis of our data, seeking to understand what EOL care measures
were already in place in the three different contexts of our study: Community care, CLSC care in
Nunavik and Montreal hospital care. We also sought variables under which these measures
could succeed, as well as challenges and barriers to providing EOL care in each of these settings.
We developed four additional themes from observations and participant dialogue: 1)
communication related to EOL care, 2) the work of interpreters, 3) bereavement, and 4)
reflections on recent provincial and national discourse concerning physician asssisted suicide and
euthanasia. To validate the accuracy of our interpretation of our interpretations, representatives
from family and community-based EOL care and institutional care were invited to read portions
of this manuscript and provide their commentary. These comments were then integrated into the
final version of this report.
3. PORTRAIT OF PARTICIPANTS
3.1 Origins
We interviewed a total of 103 persons, asking questions concerning a variety of subjects related
to EOL care in family and institutional settings (See appendix A for interview guide). Themes
included the following: a) trajectories of patient care; b) the contexts of care, specifically, the
challenges and variables to care and recommendations to improve care; c) communication; d) the
role of interpreters in EOL care; d) considerations concerning Law 2; and e) bereavement and
grief in EOL care.
Forty-six participants were located on the Ungava coast. Of this number, 17 were of Inuit origin
and 29 were Qallunaat (an Inuit designation for persons of non-Inuit decent). Forty persons
came from the Hudson coast. Twenty-eight were of Inuit origin and 12 were Qallunaat. 18
persons were interviewed in Montreal. Fourteen participants were of Southern origin and four
were originally from Nunavik and now relocated in the South. In addition to these formal
discussions, we engaged in impromptu and informal dialogues with Nunavik community
members during onsite visits in four communities in Nunavik. Two of these communities were
located on the Hudson coast and two communities were located on the Ungava coast.
3.2 Role in provision of EOL care
Table 1 reflects the roles that had led individuals to express an interest in discussing EOL care
services in Nunavik. Nurses and interpreters were most consistently on the frontlines in meeting
with patients and families and provided key insights into the complexity and nuances of direct
patient care. Equally significant were the number of participants who spoke from the perspective
of their professional role, as well as that of family members or friends of those who had received
EOL care. They drew on these memories to illustrate or elaborate upon the nuances concerning

10
the provision of EOL care in Nunavik. Their dual role is noted in italics in Table 1. A few
participants had themselves been diagnosed with cancer that was now in remission. They shared
their experience in negotiating the trajectories that many patients face. The willingness of these
many participants to share their personal and witnessed experiences concerning diagnosis,
treatment, and EOL care was invaluable in capturing the complexities of EOL care in Nunavik.
Hospital administrators who had direct contact with medical and social services providers, either
as supervisors or trainers, were also consulted for this study. Their contributions were valuable
in addressing questions of training and resources. Social service workers included social
workers, community workers, school counsellors and those with other counselling roles. These
individuals provided key insights into the psychosocial needs of families and communities as
related to death and dying. All physicians with whom we spoke had provided EOL care to Inuit
patients. As the persons designated to communicate diagnosis and EOL care options, these
individuals largely focused on the communication process of care. We met with spiritual
advisors working for the hospitals as well as pastors from Inuit communities. They spoke of their
experiences with Inuit patients and families in Southern hospital settings. Child educators
included both Inuit and non-Inuit teachers. Their input was critical in understanding how
bereavement care - and lack thereof - impacts children on emotional, behavioural and intellectual
levels.
Local governance refers to persons working for municipalities in community organization and
planning. These individuals were generous with their time in addressing questions concerning
collaboration and community engagement in care. All but one mortician and grief counsellor
!
Role!in!EOL!care!
!
!
#!of!participants!
!
Nurse!
25#
Interpreter!
16#
CLSC/Hospital!administration!!
13#
Social!services!
12#
Physician!
7#
Spiritual!advisor,!pastor!
5#
Child!educator!
5#
Local!governance!
6#
Mortician,!grief!counsellor!
6#
Wellness!worker!
4#
Community!or!family!member!
3#
Family!worker,!helper!
2#
TOTAL:#
103!
!
!
*Family,!community!member,!cancer!survivor!
26!
Table 1: Participant profile

11
whom we interviewed were women volunteers in Inuit communities. These women provided
their historical account concerning mourning and burial practices as well as insight into
bereavement and burial practices today. Wellness workers described their efforts in carrying out
community-based support to families at the time of mourning. Family helpers provided direct
services to home care patients and spoke of their process, challenges and rewards, in providing
this care.
Further, our ethnographic approach allowed us time and space for informal encounters with
community members. This was key to engaging with community members who were not
professionally engaged in EOL care. These persons are not included in Table 1.
4. CONTEXTUAL FACTORS: NUNVIK INUIT
The EOL process is deeply personal for patient and family. Life stories woven by the threads of
relationship, culture, geography, ethnicity, spirituality, history, politics, land, and myths come to
their conclusion when a patient dies. At times this end is peaceful, at times distressful. This first
section provides an overview of the contextual factors in providing EOL care that study
participants had raised as being relevant and thus informed the evolution of our questions
concerning care in the context of communities.
4.1 Demographic contextual factors
The following draws upon the 2011 National Household Survey by Statistics Canada1:
Ethnic origin: Out of a total population in Nunavik of 12,055, 94% report Aboriginal origins
(10,880). 90% of these have Inuit heritage, with 21% claiming mixed origins, primarily
European or North American. Thus, when we speak of EOL care in Nunavik, we are primarily
speaking of an Inuit population.
Age: 37% of Inuit in Nunavik are 14 years of age or younger. Less than 5% of the population is
over 60 years of age.
Language: The population of Nunavik mainly speaks Inuktitut as their mother tongue (95%).
20% have no knowledge of French or English while 75% have a working knowledge of English.
23% of the population has, at minimum, conversational capacities in French. As will be
discussed, this poses a unique set of challenges for the largely Francophone health care workers
and for their Inuit interpreters.
Religion: EOL rituals and beliefs are often rooted in religious beliefs and practices. In the case
of Nunavik, 94% of the Inuit community claims an association to Christianity with the large
majority indicating ties to the Anglican Church and others affiliated to Full Gospel/Pentecostal
churches. The remaining 6% claim no religious affiliation.
1 We are drawing on Statistics Canada for this study, recognizing the limitations in providing a completely accurate
portrait of Nunavik community households. Please see our reference list for options for further study.

12
Education: Patient families and government sanctioned health care providers provide EOL care
in Nunavik communities. Licensed health care providers are almost exclusively non-Inuit from
the South. These positions require a postsecondary education; only 16% of the Inuit population
between the ages of 25 and 65 possess a high school diploma and 2% have a bachelor’s level
degree or above. 22% have a trade or apprenticeship degree or diploma.
Housing: Those providing EOL care in the home will most likely be living in a home rented by
the government as home ownership is rare (3%) and unusually expensive due to the cost of
importing materials and paying for heat, water and sewage. In 2011, 42 % of these rental homes
were reported as unsuitable for living; that is, they had an inadequate number of rooms for the
residents (based age, gender and number of occupants). 36% of these homes were in need of
major repairs.
Mortality rates:
In 2013, Statistics Canada published a health profile of Quebec and its regions (Statistics
Canada, 2013). Compared to the Quebec population at large, Nunavik residents have a shorter
overall life expectancy (see Table 2). This is in part due to high infant mortality rates and the
alarming numbers of accidental and suicidal deaths in the region. Notably, however, Nunavik
residents have a longer overall life expectancy once they have reached age 65 then their Quebec
counterparts. According to the report, this difference is attributed to the male population who
have an average life expectancy of 20.8 years after reaching age 65, compared to the larger
Quebec population who are expected to live 18.3 years more. On the other hand, Nunavik
women average 17.9 years beyond 65, compared to Quebec-wide statistics where women
Death/ Incidence rate
Nunavik
Quebec
Life expectancy at birth
75.2
81.2
Life expectancy at age 65
22.8
20.1
Infant mortality (per 1,000 live births)
20.8
4.7
All cancers (per 100,000)
238.1
183.4
Lung cancer (per 100,000)
117.9
56.4
Circulatory diseases (per 100,000)
122.9
142.9
Ischaemic (coronary) heart diseases (per
100,000)
76.4
77.5
Respiratory diseases (per 100,000)
176.1
47.2
Colon cancer (incidence)
54.4
52.4
Breast cancer (incidence)
89.2
100.6
Unintentional injuries (per 100,000)
69.1
23.4
Suicides and self-inflicted injury (per 100,000)
106.2
14.0
Premature mortality (per 100,000)
545.0
251.1
Table 2 Mortality Rates

13
average 21.6 years of life beyond the age of 65. This has significant ramifications for end of life
care as these figures indicate that women, the traditional care-givers in Inuit society are often no
longer present to care for their spouses as they are nearing the end of life. Nunavimmiut also
have higher rates of mortality due to lung cancer and respiratory diseases. However, circulatory
disease, coronary heart disease and incidences of colon and breast cancer are equal to or below
the provincial-wide average.
4.2 Geographic and historic contextual factors
Geography has played an important role in the development of Inuit identity. Both voluntary and
involuntary migration patterns mark family and community histories. Migration trajectories
affect where people choose to die, the persons who are available to provide this care, and the
presence of loved ones at the time of death.
4.2.1!Voluntary!migration!
The Inuit of Nunavik are descendants of early nomadic
groups who travelled from territories in Russia, Greenland
and Alaska. These journeys began about 1000 years ago
when Inuit in small clans of 20-30 persons began their
migration across what would eventually become Arctic
Canada. Prior to their migration, other groups such as the
Dorset and the Thule populations had inhabited the
territory. Evidence of their presence in Nunavik dates
back to 2000 BC (see Abbott, Mastroianni & Sturges,
2003).
Today Canada has four Inuit regions (see Figure 2):
Inuvialut (North West Territories), Nunatsiavut
(Labrador), Nunavik (Quebec), and Nunavut (its own
territory). Inuktitut dialects differ among and within regions, as different vocabulary,
pronunciation and terminology developed and migrated with nomadic families and clans. Some
Inuit now situated in Nunavik were born in Nunatsiavut or Nunavut and have close family ties in
these regions. However, as Figure 2 indicates, Inuit patients are assigned hospitals according to
their region of residence as opposed to proximity to a health care center. Thus, an Inuk from
Northern Nunavik who may have family ties in Nunavut and not Nunavik will nevertheless be
transferred to Kuujjuaq or Montreal for end of life care needs.
4.2.2!Settlement!and!displacement!
The strength of the relational fabric within a community is in part based on the amount of
voluntary settlement and involuntary displacements experienced by its families. In the early
1900’s, certain Nunavik families had voluntarily settled near fur trading posts and whale hunting
sites as their hunting and sewing products were traded for products such as iron, needles, flour,
black tea, sugar and canvas (see Abbott, Mastroianni & Sturges, 2003). In many instances,
families kept ties to seasonal family camps outside of the community. To this day, families
We are in a unique
bubble in terms of
how our history has
shaped today’s
society. I hope
that it never
bursts
(Interpreter)

14
return to these familiar sites that have been known as home for generations in their family, places
where hunting, fishing and berry harvesting are plentiful. Inuit attachment to the land remains
Figure 1: Inuit Regions of Canada
Figure 2: Inuit patient trajectories (Map created by Inuit Tapiriit Kanatami)
strong and, according to the Nunavimmiut with whom we spoke, the majority of Inuit prefer to
be in this environment of family, community and landscape when they die. Likewise,
Nunavimmiut spoke of how families and communities go to great lengths to ensure that members
are buried on the land. This includes efforts to repatriate the bodies of those who have lived

15
outside of communities for most of their lives, or who had been already buried in the South
despite family wishes.
Many Nunavimmiut have histories in which involuntary displacement and resettlement occurred.
Participants also spoke of how the residential school movement served to displace two
generations of Inuit youth; these children were sent to schools outside of their communities and
returned as strangers to their own families and communities (see www.legacyofhope.ca). The
tuberculosis epidemic in the 1950’s also contributed to unexpected and immediate separations
between family members as those diagnosed with the illness were sent to sanatoriums in the
South (see Grygier, 1994). There are records of cases in which these family members
disappeared and had no contact again with their loved ones. Nunavimmiut described how these
involuntary displacements severely disrupted the capacity to develop attachments among family
members, a consequence that has led to fragile family structures for many today.
Involuntary displacements also occurred when federal and provincial governments sought to
localize populations into centers to facilitate air transportation, education, and health care
delivery. Participants described incidents in which families lost their dogs as their primary
means of transportation either due to disease or the dogs’ execution by local law enforcement
officers. Some participants perceived the killing of dogs as a deliberate attempt to establish a
fixed Canadian presence in Arctic lands by reducing Inuit movement and by creating a
dependency on government allowance and provisions. Though the Quebec government has
consistently denied these allegations, the government acknowledged the harmfulness of this mass
killing and paid 3 million dollars to be used in the promotion of Inuit culture (see Nunatsiaq
news, August 8, 2011).
Participants spoke of this relocation and resettlement, stating that families and clans who, a) had
their own dialects and cultural traditions concerning clothing, food preparation, and
communication, and b) had existing structures of power and control, now were expected to create
a ‘community.’ Families were divided between communities as husbands and wives chose
which sibling or parent to follow. Community members described how, as a consequence,
internal differences and friction arose when clans were brought together involuntarily. They
indicated that this discord at times continues to affect care giving in community contexts.
4.3 Social and spiritual contextual factors
4.3.1!Spirituality!and!worldviews!
Participants spoke of former shamanic practices,
now apparently obsolete, in which either good or
evil would prevail. Good shamans found food
sources and healed illness and disease. Evil
shamans worked against a person’s survival. In the
1800’s, European missionaries introduced
Christianity as an exclusive religion. By the early
20th century, they had definitively turned to
Christianity, thereby eradicating centuries of
shamanic practices (see Flaherty, et al. 2011;
A lot of the elders would
know we’re all going to
die. Death is all in every
one of us, so they’re,
they’re open to talk about
it. (Family member)

16
Laugrand & Oosten, 2010). Participants spoke of heaven and hell continuing to be widely
accepted as afterlife destinations and of God choosing when a person is born and when a person
will die. Suicide, however, is largely perceived as contrary to God’s timing and will and
participants indicated that early traditions taught that these persons would go to hell. This
teaching is no longer accepted by the mainstream. Concerning the divine will, many participants
remarked that when people are given a terminal diagnosis, they die fairly quickly. Some suggest
that the cause of this is the perception that death is now God’s will.
Worldviews concerning death are also shaped by Inuit proximity to the land. One participant
spoke of how hunting and fishing practices bring children and adults into a regular encounter
with death, comparing this habitual experience to persons in the South who buy meat in a
grocery store. Several Nunavimmiut spoke of how natural death is understood to be part of the
cycle of life, something to be accepted rather than feared or avoided.
Traces of historical Inuit worldviews are evident in Inuit forms of spirituality (see Laugrand &
Oosten, 2010). Natural phenomenon such as animals, mountains and lights are understood by
some to be infused with spiritual presence, though this is up for debate among community
members. Likewise, in certain traumatic forms of death, the spirits of the dead are understood to
remain on earth, either until they are released through prayer, or are released when the grieving
stops their mourning and they move on with their lives.
Participants also identified that naming practices often shaped grief and bereavement in families
and communities. In Nunavik, newborns are often given the name of respected persons or loved
ones who had recently died. It is felt that in a sense, the person who had died lives on through
this newborn, not as a reincarnation but as a presence or influence. They explained that contrary
to the perception of reincarnation that is often attributed to this practice (see Mills and Slobodin,
1994), they believe the soul of the dead has moved to heaven or hell. However, the strengths,
characteristics and attributes of the deceased will now be transmitted to the newborn. For
example, some infants and children may be called “mother, brother or grandmother” by the
parent if the child has been named after this deceased relative. It is not unusual for children to
have more than five names, though not all given as namesakes. Participants have stated that on
one hand, this facilitates the grieving process as deceased remain present in the minds and hearts
of their loved ones in this manner. On the other hand, some explained parents who are expected
by others to name a newborn after one who has deceased are not always comfortable with this
practice.
4.3.2!Caring!traditions!
Survival in Arctic conditions
historically depended on the
ability of families and clans to
locate them close to an ever-
moving food source. This
frequent movement impacted
how EOL care was provided.
An elder explained that when
The Inuit practice (of caregiving) is
very strong. If you care for that
person and the passing of life, your
heart is going to be peaceful. If you
don’t care for the person, your heart
is going to suffer. (Inuit elder)

17
families could afford to stop, they remained in one place and provided consistent care for the
dying. This ability to stop depended on their proximity to a consistent food source, the size of a
family or clan, and their proximity to each other. Daughters and sons lived in the same tent as a
dying parent. According to participants, in rare circumstances, the old and infirm were left
behind if they could not keep up with movement of a family.
Community members indicated that traditional teachings held that those who provided end of life
care to their parents would be at peace with themselves as their lives continued (see Weetaluktuk
et al., 2008). Those who did not care for their parents were taught that they would experience
distress, even after death had
occurred. This teaching continues
in many communities to this day.
Community elders and spiritual
leaders explained that historically,
once death had occurred, bodies
were placed under an oblong pile of
rocks as the frozen tundra prevented
bodies from being buried. Included
were a person’s key possessions
such as hunting, carving, cooking
and sewing tools. The rocks
covering the body prevented
predatory birds and mammals from
preying on the deceased. In parts of
Nunavik, these graves are now preserved and protected with fencing.
In Nunavik communities, extended family and community members continue traditions in which
immediate care-givers keep vigil during the last days of a patient’s life. More recently, members
of the women’s auxiliary, a church-based volunteer group, assist in cleaning, cooking, keeping
vigil, recruiting volunteers, if needed, and in washing bodies after death. These practices remain
active.
The development of health centers and hospitals in communities has had two paradoxical effects
on EOL care provision. On the one hand, people have more treatment options and are living
longer. They also have more support in terms of medical knowledge, interventions, and supplies
to ensure the comfort of patients dying in the home. On the other hand, certain communities
note a decrease in family and community-based EOL care practices and a larger reliance on
Southern health care practices. Participants attribute this to various factors: a) positive
perceptions of Westernized medicine based on patient accounts of healing and relief from
suffering, and b) a lack of formal recognition for what families and communities have
traditionally offered and continue to offer in terms of home care thus at times leading to patient
and family perceptions that Western medicine is “better.”
4.3.3!Social!change!and!upheaval!
Figure 3: Remnants of an historical grave

18
The complexities of social change and consequent disruption are too complex for a full
discussion in the context of this report. What may be important to note is that both Inuit and
Qallunaat participants routinely described how the large majority of Nunavik families were
struggling with a wide range of physical, social and psychological issues that made extended
EOL care giving in home environments difficult if not impossible. These struggles were
attributed to the effects of years of colonialism as well as to the rapid historical and social
changes that stripped away relational resources and coping skills in individuals, families and
communities. Intergenerational forms of abuse, addictions and violence against self and others is
of concern to many. Significantly, participants in communities and health care institutions
consistently indicated that services to address this suffering, both governmental and Inuit-
initiated, are widely underfunded and understaffed.
5. TRAJECTORIES OF CARE
5.1 Potential care trajectories
Figure 3 illustrates the diverse trajectories of patient care that family members and medical
personnel described. In a typical scenario, a patient will have come to the local health center in
their community, known as the CLSC (Centre local de services communautaires), where a nurse
or, if present, a physician, will have conducted an initial assessment based on the presenting
symptoms. If further evaluation or treatment is needed, the patient would have been referred to
the Tulattavik Health Center (on the Ungava coast), the Inuulitsivik health center (on the Hudson
coast) or to a hospital site within the McGill University Health Center (in Montreal). The arrows
represent the potential directions that patients follow in receiving care. As the arrows indicate, it
is not unusual for patients to alternate between North and South as their disease progresses.
Assessment refers to consultation with a doctor or nurse to determine prognosis and follow-up
care. Admission refers to a patient remaining in hospital for one or more nights to receive
further assessment or treatment.
Each of the northern inpatient health centers have one room designated for palliative care. In
Puvirnituq, rooms that are used for surgery and acute care are transformed into longer term
patient rooms if needed.
If a patient’s health declines in the community resulting in the need for inpatient care, the nurse
will call the community physician or the physician on call. A nurse from the inpatient health
center, and if needed, the physician, will fly to the community by medivac to accompany the
patient back to the inpatient health center for evaluation. The patient may then be transferred to
Montreal by one of the two Northern airlines, Air Inuit and First Air. In addition, the
‘Challenger,’ a fully equipped air ambulance with an onboard intensive care unit is available in
cases of emergency, though it can only depart from Puvirnituq, Kuujjuarapik and Kuujjuaq.
Those with whom we spoke stated that EOL care planning would be set into motion under the
following conditions: a) the physicians had stated that they could not treat the condition (e.g., an
advanced form of cancer), and b) treatment to extend life or make what remained of life more
comfortable was available (e.g., kidney dialysis, palliative radiation) but would need to be

19
provided in a hospital center, often far from the patient’s community. The location in which
EOL care could be provided to Nunavimmiut was determined by several factors, including: a)
the potential medical complications and the capacity for families and communities to deal with
these; b) whether there was a palliative care protocol in place for the patient; c) whether there
were adequate numbers of family members and health care professionals available to provide
EOL care; d) whether there were beds available in the inpatient health centers in the North; e)
whether the patient could tolerate air transportation.
When it is determined that a patient requires palliative care, the transfer back to the North occurs
fairly quickly; if the patient is stable, usually within a week. The liaison nurses at the Quebec
Northern Module located in Montreal facilitate the transfer and the transfer of documents
concerning prescriptions and treatment recommendations.
5.2 Case scenario
Drawing on details frequently mentioned by participants, the case example below presents a
fictional account based on a compilation of patient stories. This case portrays how trajectories of
care unfold when there are no major complications related to communication or transportation to
interfere with the process.
Mr. J, aged 54 arrived at the community CLSC care center with complaints of stomach pain and
vomiting. Following an assessment by a nurse and a consultation with the community primary
care physician who was visiting from Puvirnituq, he was referred to Montreal for tests. The
patient had a history of cancer and recurrence was a concern.
The patient and escort (his daughter) were provided tickets to fly from their community to
Puvirnituq where they transferred planes to come to Montreal. At the airport, a driver from the
Module du Nord, Québecois (MNQ) transferred Mr. J and his daughter to the patient residence
where they were provided with a room with two beds and meals in a common area. He was also
assigned a liaison nurse who was responsible for facilitating communication between Mr. J, the
specialists in Montreal, the Northern physician who was assigned to visit his community, and the
community health care center nurses. The liaison nurse provided him with a card outlining his
appointments and their location for the following day.
The next day, Mr. J and his daughter arrived for his medical exams. As Mr. J only spoke
Inuktitut and his daughter was not confident in translating medical terminology, an interpreter
was present. Within days Mr. J was told that the cancer had metastasized in his brain and was
inoperable. He was referred to the palliative care center at the MUHC for an assessment and
treatment recommendations. His daughter remained with him, communicating by phone with
her family in the North. A meeting was set up in the local CLSC to meet with the physician
nurse, social worker and family members to communicate the diagnosis and their desire for
treatment.
Shortly after, Mr. J’s wife, two biological daughters, an adopted son, a son-in-law and a niece
were called into the local CLSC to meet with the physician who had spoken earlier with the
oncologist in Montreal. They were accompanied by the local nurse and social worker. The
visiting physician explained the results of the tests and provided recommendations concerning

20
palliative care. The family was given choices regarding care in the home, the hospital in
Puvirnituq (accessible only by plane) or that he remain in Montreal. After a brief discussion
amongst themselves, the family chose home care. A nurse then visited the home in the patient’s
community to assess the suitability of the home environment for providing EOL care. There was
room in the common living space for a bed and commode. His wife committed herself as primary
care-giver, and thus Mr. J. and his daughter were provided tickets to return home two days later.
Figure 4: Patient trajectories, sites and care providers
Upon returning, Mr. J’s condition remained somewhat stable for 4 weeks. He was able to move
around with little assistance. On the 5th week, his condition rapidly deteriorated. As his
daughter stated, “it was like he gave up.” He stopped eating and remained in bed. His wife

21
began providing around the clock care. A nurse stopped by to demonstrate how to give
morphine injections. The auxiliary committee from the church prepared food to bring to the
home as the aroma of cooking in the house had made Mr. J nauseated.
Mr. J’s daughters stopped in each afternoon to do some cleaning and see how their father was
doing, but childcare responsibilities kept them from being able to spend the night. Mrs. J.
became increasingly exhausted, perhaps a combination of the around the clock hours she kept in
providing care and the grief that she experienced. The family requested that Mr. J. be
transferred to Puvirnituq where he could receive 24 hour nursing care. His wife accompanied
him. Within 3 days, Mr. J died. His body was transferred back to his home. For two days,
community members passed by to sit with the family. Relatives flew in from distant communities
for the funeral. Once this waiting period had ended, Mr. J.’s body was transferred to the church
for a funeral service, then to the cemetery where a song and prayer was offered around his
grave.
5.3 Complications related to North/South care
Overall participants describe patient care as satisfactory regarding communication between
Northern health care institutions and Southern hospitals. The greatest obstacles to treatment,
however, were communication breakdowns and missed appointments as a result of
communication and psychosocial difficulties. According to one Southern liaison nurse, about
60% of her patients and escorts were able to negotiate the system without complications; a large
part of her job consisted of reorganizing and rescheduling appointments for the 40% who had
difficulty. Health care workers and the families of patients cited the following obstacles to
families and health care providers negotiating Northern and Southern EOL care:
1. Keeping of appointments
Patients risked missing appointments if a guide or interpreter was not available to assist them in
negotiating Montreal’s medical facilities and registration requirements. Nunavik patients in
Montreal did not have patient navigators in the hospital, nor did they have adequate access to
psychosocial services to address the concerns that at times prevented them from following
through with their appointments. Furthermore, some were not aware of the work it entailed for
nurses to schedule and reschedule appointments. Missed flights or appointments with the
specialists, or inadequate follow through on protocols for preparation for medical procedures
delayed their care by weeks or months.
2. Family distance
In the instances of patients who had been given a terminal diagnosis, the Nunavik Regional
Health Board paid for the plane flights and the accommodations of two escorts from the North.
Any additional family members were required to find their own way, a costly endeavor. As a
result, the patient and escorts who were in Montreal for EOL care were isolated from their
primary support systems in family and community. Geographic distance also played a factor
when patients went back home after a period of hospitalization. When a patient returned to the
North appearing significantly worse than when he/she had left, it could have a shocking impact
on family and community members who were not prepared to see the patient in a weakened
state.

22
3. Preparedness of escorts and interpreters
Patient EOL care largely depended on the reliability and competency of escorts and interpreters.
When those who were assigned to the patient were present and capable of responding to the
physical, linguistic, and emotional needs of the patient, the patient’s experience was significantly
altered for the better. If the escorts were not consistently present, the patient’s experience would
be more isolated and, at times, overwhelming.
4. Organization of plane transportation
Terminal patients who are transferred to and
from Montreal depend on air and sometimes
ambulance transportation. When the patient
is on a stretcher, seven plane seats are
required, along with space for an escort and
often a nurse. Lack of available space on a
plane can delay the return of a palliative care
patient to the North. In one case, a patient
who was near death had his flight back
delayed 5 days due to complications related
to adequate preparation, lack of personnel
and lack of flight availability.
5. Patient transfers and health worker judgement calls
Physicians reported that there had been needless transfers between North and South. Related to
EOL care specifically, this occurred when patients had been sent back to the South for tests or
treatment because Northern physicians or families were unaware that a terminal diagnosis had
been given or because patient and family had denied the reality of the terminal diagnosis. Nurses
and physicians also described the difficult task of determining when to order tests, a costly and
time-intensive procedure if these tests had to be done in Montreal, and when to wait for the
symptoms to abate on their own. In a few cases, patients and families recounted incidences in
which complaints had not been taken seriously, which then delayed the diagnosis and treatment
of cancer. One cancer patient in particular had been accused of fabricating symptoms in order to
gain a free trip to the South. She had to wait for this physician to go on vacation before she could
get a consultation from another physician referring her to the South for care.
6. Patient reticence
Patients at times resisted recommended transfers for care. Participants explained that sometimes
patients feared that if they were sent to Montreal, Kuujjuaq or Puvirnituq for care, they would
not be well enough to return home. In contrast, on occasion patients sent back to the North for
palliative care resisted this transfer back home as it confirmed that nothing more could be done.
6. FAMILY AND COMMUNITY ORGANIZED CARE
Patients transferred back to the North or who have never left their communities are
often provided EOL care by family and community. This care is often provided in
collaboration with nurses in the local CLSC. Residents of Kuujjuaq appear to be an
exception as many described accessing inpatient health center services in the final days
Ben souvent… ils ont leur
traitment…pis ils sont trop
instables pour être transférés à
Kuujjuaq pis on veut pas qu’ils
meurent dans l’avion non plus…
ils n’ont pas le temps de revenir
chez eux. (Physician)

23
of a patient’s life. In this next section, we will draw on our discussions with participants
to describe who is involved in family and community care, the variables that shape the
provision of that care, and the recommendations offered by participants to ensure the
future of EOL care in family and community contexts.
6. 1 Family and community services
6.1.1!Family!!
Care-providers stated that most terminally ill patients preferred to die in their homes where they
are surrounded by friends, family and familiar home and community environments. Families
and communities would go through great lengths to respect these wishes, often in collaboration
with the local health center or regional hospitals. Families often preferred to have the patient at
home for the final days of life as their own grieving process was supported when family, friends
and neighbours surrounded them during the final days of a patient’s life. Women tended to be
the primary caregivers for family members who are dying in the home: wives, daughters and
granddaughters. Men did become involved as they may have been needed to lift or move the
patient and when women were unable to provide needed care.
In Nunavik, the definition of family is widened, creating a broader system of relations through
which EOL decisions are made and care-giving responsibilities are assumed. For example, the
children of nieces and nephews were also identified as one’s grandchildren and could act as key
decision-makers and caregivers. Family members who had been separated by adoption as infants
or youth would, at times, return and engage in providing EOL care for members of their birth
family. It was not unusual for grandparents to have raised a child during formative years of that
child’s life. In turn, grandchildren and great-grandchildren may have been present during the
decision-making and care-giving process.
In addition to private monetary donations and assistance that comes from community members
during time of death, the local co-operative organization (store and hotel) will also make
donations of food or financial aid to families. The amount varied according to family need.
On a related note, nurses observed that families and neighbours were very comfortable with
providing food, keeping vigil, and attending to the social needs of families during a patient’s
final days. However, when it came to bathing, toileting or turning the patient, there was more
reticence. In larger communities, local family helpers or home care nurses engaged by the CLSC
would may have assisted the family in providing this intimate care.
6.1.2!Home!environments!
Housing shortages are rampant in Nunavik. Three or four generations may be living in one
dwelling making it difficult to create a space in which to provide palliative care. Persons who
receive EOL care in the home were cared for in the common living space or in a bedroom off to
the side. If requested, supplies were provided by the local health center such as an electric
hospital bed, commodes, pads and so on.

24
Daily life routines continued in the home
during the time of death, a home where three
or four generations may have been living in a
home or in close proximity to each other.
Consequently, children were exposed to the
dying process. They learned about death
through observation in their own homes or in
that of others. Parents in the study identified
struggling to answer children’s questions
concerning death and loss as they stated that
these conversations were not encouraged in
their own upbringing. Thus, they did not
have a model to go by.
Families were compensated for living with
elders through a Kativik government housing
policy in which those who dwell with an
elder pay $100 dollars in rent, vs. the
payment of $ 300-550 per month that they
would otherwise pay. On the one hand,
family members described that this policy
provided financial relief for family members who provided EOL care to elders in their homes.
On the other hand, some family members expressed concern for the care a parent was receiving.
In one case, it became apparent that a family member had agreed to provide care for an elder
motivated by financial reasons, not out of desire to care for the patient. The family members
living outside of the home felt constrained in their ability to protect this elderly parent.
6.1.3!Women’s!auxiliary!
In many communities, the women’s auxiliary
committee played a vital role in supporting families
during the dying process. As volunteers, these women
would cook, clean and prepare food for patients and
families, organizing additional support and financial
aid as needed through the FM radio station. Its
members may have also be invited to pray, read
scripture or sing with the family at time of death. This
group was also responsible to prepare the deceased for
burial and the family for the funeral, though not all
members took on this role as some felt they were not
capable. The women whose role was that of community morticians had been mentored
into this role by the previous generation of women volunteers.
6.2 Challenges and variables in providing community care
People are more supportive
when they know people are
dying from old age or cancer…
people are more open to receive
support, even the family… It’s
their last stage of living that
people tend to help out. The
community really comes. They
go visit… or they go clean up
they family’s house.. and some
would cook their meals… There’s
a lot of community connection.
(Women’s auxiliary member)
Figure 5: Winter scene in Nunavik community

25
Providing care in community contexts
poses a number of challenges. Participants
described how at times, family or
community members was unable to meet
the actual needs of the patient, a reality that
was difficult to acknowledge. Participants
explained that EOL care commitments
were rooted in Inuit values, practices and
beliefs and therefore difficult to relinquish.
Several variables played a role in a
family’s ability to provide care.
Nunavimmiut who had been engaged in
direct patient care or in accompanying
children and families described how
psychosocial, educational, geographic and medical/physical factors shaped home-based
EOL care provision.
6.2.1!Psychosocial!variables!in!family!care!provision!
1. Strength of family bonds and coping skills in families
EOL care in families required a close level of collaboration and cooperation.
Decisions were complex and nuanced, demands could be significant, and grief could be
intense. Participants described
how strong family bonds and
coping skills would enable the
family members to deal with the
experiences of loss, stress,
conflict, difference of opinion,
and suffering that is inherent in
providing end of life care.
However, if there was a history
of violence or abuse by the
patient toward other family and
community members, this
would serve to complicate EOL
care.
2. Access to resources:
Participants also spoke of the importance of resources: personnel, financial and space.
First, having an adequate number of persons to provide care was a primary concern for
family. For example, the time commitment required to provide 24-hour care was
significant. A larger family without major child and work responsibilities could be
more available to provide care while a smaller family or one that was already spread
thin in taking care of children or grandchildren had less available time. The number of
persons available to provide care also depended on the nature of the patient’s status and
reputation in the community. Community members described how a person with a
strong, positive reputation in a community was more likely to draw a wider diversity of
There is a belief that you
have to take care of your
family, what is (happens) in
the home stays home and
shouldn’t really be going out.
So even though they are
burning out, they don’t reach
out for help. (Family member)
They need to know that it’s ok
to be scared, that these
feelings are normal when they
don’t understand what is
happening to a dying person…
rather than pretend he is not
there.
(Community member)

26
persons to engage in care than one who may have had a history of abusive and violent
behaviour.
Second, those who took time off from work, hunting, or fishing to provide care in the
home carry an economic burden as they continue to meet the needs of their own family.
Economic implications in EOL care were also felt by family members travelling from
other communities to assist in care who would lose their income as well as dispense
significantly for a plane ticket. Families who were financially stable and who had
external support (e.g., monetary support, gift certificates or respite care providers) were
more positioned to continue providing care.
Third, physical space was a key variable in providing care. Factors related to the
suitability of the home environment (e.g., number of occupants, presence of stairs,
adequate food, and the consistency of municipal services - water delivery and sewage
pick up) also affected how comfortably a patient could be kept at home on a long-term
basis. Families did not describe this as a concern for shorter term EOL care.
3. Prior knowledge and personal comfort level in providing EOL care
The level of knowledge that families brought into EOL care would also impact their
ability to provide care. At times, knowledge was transmitted through observation and
mentoring as previous members had died in the home. When a member had already
observed or participated in the turning, bathing, feeding of a family member, it would
be more natural to do this again. It might also have been less shocking to see a family
member experience the physical and mental changes accompanying death. Lack of
preparedness, prior experience or access to educational resources could create more
hesitation in a family to provide care.
As medically-based palliative care interventions were increasingly offered to patients,
family members were asked to engage in procedures with which they were unfamiliar.
For example, giving a needle to a loved one to reduce pain. The ability of a family to
adjust to this external advice depended also on their personal comfort level in providing
intimate care and the degree of trust felt for the nurse providing these instructions. In
addition, language and terminology played a role as care required access to an
interpreter, and freedom that family members felt in asking for clarification or stating
opinions.
Key to the family provision of care was the level of advanced care planning that had
already occurred among patients, families and health care providers. Family
knowledge about the nuances and legalities of life-saving efforts, palliative care options
and their awareness of patient wishes affected the level of conflict that existed in
making EOL decisions for the patient. One area in which this conflict arose was over
the use of morphine. Once again, interpreters often played a key role in transmitting
this knowledge accurately between physician and patient.
4. Patient condition

27
Finally, the condition of a patient served as a variable in whether family members were
positioned to provide care in the home. Factors included: a) weight of the patient and the ability
of family members to lift or turn the person as needed; b) the autonomy of the patient in
communication, bathing, eating, toileting and if family members were at ease with providing this
intimate care; c) the frequency and duration of direct care needed (e.g., caregivers at times
became fatigued in being up day and night and needed to end their commitment to home care);
d) the presence of dementia in the patient and the ability to provide a safe and contained home
environment; and e) the level of emotional, spiritual or physical distress in the person who was
ill and the ability for families and medical staff to control physical or emotional pain in a home
context.
Both health care providers and family members stated that it was not unusual for
families to commit to providing EOL care though became unable to follow this through
to the end. Either the patient’s condition deteriorated more rapidly than was expected,
or the actual realities of providing care proved to be too difficult. In these situations,
health centers become a safety net for patients.
6.3 What can be done? Family and community care
In the face of the above-mentioned factors, many of the participants felt that the
traditional practice of families providing EOL care was decreasing. Most agreed,
however, that there were steps that could be taken to reverse this trend.
6.3.1!Psychosocial!services!
Across the spectrum of interviews and informal dialogues, participants described how a
fundamental lack of mental health services had a trickle-down effect on family and
community capacity to provide both long-term and short-term EOL care. Without
support in the following areas it would not be possible for communities to develop a
sustainable plan for EOL care provision.
1. Develop culturally-informed bereavement support for children and adults
Participants described different initiatives that were assisting individuals and families in
the midst of grief. These practices often incorporated Inuit traditional and faith-based
practices. However, existing supports could not meet the level of demand. As Figure 1
demonstrates, deaths caused by accidents and suicides are disproportionately high in
Nunavik. Most Nunavimmiut have been marked by the traumatic deaths of family and
community members. Participants described how the current lack of services to assist
children and adults in their grief and bereavement results in complex grief reactions
where feelings of sadness and anger could be overwhelming. They described how, in
these instances, children would manifest their distress through acting out or withdrawal.
Adolescents and adults would isolate themselves from friends, family or colleagues, or
self-medicate through substance use. This unresolved grief would surface when a
family member was dying of illness or natural causes. Taking care of a family member
could soon become emotionally overwhelming. Participants described that avoidance
of the dying might have been the only foreseeable response for some grieving family
members. This resulted in increases in the transfers of patients to health facilities.

28
Participants stated that bereavement initiatives in certain communities could be
reaching more families if given funding and recognition.
2. Generalized psychosocial services
Several Inuit and Qallunaat participants cited a 20/80 rule when assessing the
percentage of stable versus struggling families in Nunavik communities. In their
opinion, 80% of families were struggling to meet their basic social and physical needs.
This social breakdown of families and community was attributed to a direct
consequence of unaddressed suffering. Community members described how many
struggle with intergenerational patterns of addiction and abuse. Access to mental health
services would increase their capacity to address the conflicts, grief and anxieties that
were inevitable in caring for terminally ill family members.
It is important to highlight that participants were not asking for an increase in
government-sponsored programs imported from Southern communities, nor were they
expecting solutions from the South. Several grassroots initiatives exist to provide
mental health and bereavement services to these individuals; however, they struggle
with personnel, funding and recognition by the health care system.
6.3.2!Facilities:!Respite!care,!long!term!care!facilities,!mortuary!facilities!
1. Long-term and respite care
When family members become fatigued and can no longer care for the ill, patients are
transferred to one of the regional inpatient health centers. It is not unusual for these
patients to be assigned to beds designated for other patients, thus creating a scenario not
unlike “musical chairs,” one in which beds are allotted in the hope that the patients will not
need the bed too long before another patient demands the space. An increase in health
center beds and inpatient elder facilities are needed for the increasing numbers of Nunavik
residents for whom institutional care is their only option.
We spoke with several participants who indicated that families need the option of respite
care. The municipality in Puvirnituq has organized a respite care facility for families caring
for elders and persons with disabilities who are capable of living autonomously. Seven
Hudson coast communities access this home, Sailivik, with four respite and four long-term
beds. Families can send members there for up to two weeks, every three months. The
inpatient CLSC in Puvirnituq also offers beds for respite care for families providing end-of
life-care in the home. In both facilities, however, space is inadequate for the level of need.
Furthermore, the health center atmosphere is not conducive to palliative care. As one
physician noted, “L’ambiance est facilement teinté par ce qui ce passe du côté des soins
aigus.” The respite beds are clearly located in a hospital environment and do not offer the
environment of a palliative care or respite facility. The patients are often two per room.
They are located in close proximity to those in acute care and are affected by this as the
environment can be filled with activity and rest can be difficult.

29
While the Ungava coast has an elder’s home that has been transformed into a CHSLD
facility, the Hudson coast offers no such long term, inpatient EOL care services despite
its larger population.
2. Respite care networks
Respondents also suggested that communities should develop a network of respite care
providers who are assigned to homes for several hours at a time so that family members
could leave to sleep, buy groceries or seek a change of scenery. Currently, family
workers are assigned to homes for much shorter periods of 1-2 hours. Families also
requested palliative care rooms in communities, not unlike those offered in Southern
palliative care institutions. This would allow patients to remain in their community at
the end of life when home facilities are not adequate or when family members find the
emotional burden of caring for a dying loved one in the home to be too much.
3. Mortuary facilities
Finally, mortuary facilities are desired
in communities that do not have health
centers. Each community has a small,
refrigerated container that is used to
store bodies. However, the refrigeration
is not always functional and there is no
space for visitation. Women’s auxiliary
members access CLSC facilities to
prepare bodies in some contexts.
However, they are not always
welcomed in CLSCs. Some would
prefer a space where they could prepare
the bodies outside of the home and
CLSC and where families and
community members could come to visit
the body and say good-byes before the funeral. A physician spoke to this need, stating
that at times the personnel in the CLSC feel torn by the need for the family to have a
private space to mourn and their need for space to tend to patients. She explained that
an alternative space is needed:
Cela aiderait à faire face au malaise qui parfois survient lorsqu’on doit garder le corps du
défunt dans le CLSC tout en devant poursuivre nos activités cliniques. Malheureusement, il
arrive par moment que la clinique déborde, qu’on a besoin de toutes nos salles de travail,
de tout notre personnel. Tout le monde devient alors mal à l’aise, pris entre le désir
d’offrir le meilleur environnement pour que la famille puisse se recueillir et celui d’offrir
les soins aux malades qui continuent à consulter au CLSC.
One community church has found a solution to these needs by building a small addition onto the
back of their church for this purpose.
Figure 6 Morgue in community

30
6.3.3!Communication!of!educational!materials!to!families!
Both Inuit and Qallunaat participants indicated that communication concerning medical
issues is most clear when presented in an oral and visual format. Wordy pamphlets are
ineffective tools of communication with Inuit families. Optimally, a trusted nurse or
physician is needed to discuss advanced care planning, to prepare families for the dying
process, and to demonstrate palliative care techniques such as administering injections,
keeping a patient from dehydrating and so on. Given that not all family members are
always present during these sessions, families suggested supplementary materials in
Inuktitut and English in the form of video or illustrated pamphlets to prepare them for
the physical and emotional challenges in providing EOL care.
7. NUNAVIK INPATIENT HEALTH CENTERS AND OUTPATIENT CARE
7.1 Inuulitsivik Health Center
The Inuulitsivik health center is located in Puvirnituq on the Hudson Coast of Nunavik.
Professional services include pharmacy, laboratory, radiology, midwifery, audiology, and
dentistry. It offers inpatient and outpatient care. Its inpatient unit has 25 beds, 17 of which are
designated for acute care, 8 for long-term care. Long-term beds are available for patients with
loss of autonomy, those with physical and intellectual disabilities and those requiring EOL care.
Three nurses are assigned to each shift in the inpatient facility. Here, the ‘préposés aux
établissements Nordiques’ also known as Northern Attendants, served as interpreters for patients
and families.
The health center oversees the outpatient CLSCs in six communities also located on the Hudson
coast or strait: Salluit, Ivujivik, Akuluvik, Inukjuak, Umiujaq, and Kuujjuarpik. Nurses are
assigned to communities according to population and need. There is a 2-nurse minimum in each
community. Persons in loss of autonomy
(PLA) nurses are located in four
communities: Salluit, Inukjuak, Puvirnituq
and Kuujjuarapik. A liaison nurse works
from the hospital center, coordinating
patient visits to the South and working on
telehealth services. In addition to these
onsite professionals, an average of 21
medical specialists rotate through the
communities throughout the year. These
specialty services include internal
medicine, paediatric services, psychiatry,
general surgery, pulmonology, and
cardiology.
Figure 7: Innuulitsivik Health Center

31
7.2 Tulattavik Health Center
The Tulattavik Health Center is located in Kuujjuaq on the Ungava coast. It offers inpatient and
outpatient care. Radiology, ultrasound, laboratory, dentistry, pharmacy, birthing (midwife),
minor surgery, paediatrics and internal medicine are provided onsite. One room has also been
transformed into a psychiatric observation room designed to prevent self-injury. The center has
15 inpatient beds, including private and double rooms. These are designated for those with
chronic conditions (currently used by elderly patients and youth with disabilities), patients with
loss of autonomy, paediatrics, limited intensive care and EOL care.
The Tulattavik Health Center services patients in Kuujjuaq and five communities located on the
Ungava coast: Kangiqsualujjuaq, Tasiujaq, Auplaluk, Kangirsuk, Quaqtaq, as well as
Kangiqsujuaq on the Hudson strait. Each of these communities has a CLSC with at least two
nurses; depending on population size and need, there may be more. Kangiqsualujjuaq,
Kangirsuk, Kangiqsujuaq and Kuujjuaq have a PLA nurse assigned to meet with patients in their
homes and provide support to families.
7.3 Tusaajiapik elder’s home
The Tulattavik Health Center in partnership with the municipality of Kuujjuaq and the Kativik
Municipal Housing Board also staffs a residence for elderly and persons with loss of autonomy,
many who have unconfirmed diagnoses of dementia. This residence has 12 beds. It is the only
residential care facility for Nunavik’s ageing population. It opened as an independent living
facility, though is now functioning much as a Centre d'hébergement et de soins de longue durée
(CHSLD), a long-term care facility. At the time of this study, six elders resided here all with
mild cognitive condition or dementia. The remainder of the patients had another form of a
cognitive or physical
disability. Four men were
residing in the Tulattavik
Health Center while on the
waiting list to enter the elder’s
home. As several residents
come from communities
outside of Kuujjuaq, two
family members are provided
flights three times per year to
visit residents of the
Tusaajiapik elder’s residence.
Figure 8: Outpatient CLSC in a Nunavik community
The Ungava coast has two independent care facilities, located in Kangiqsualujjuaq and
Kangiqsujuaq, for which elders and persons with disabilities are given priority. The residence in
Kangiqsualujjuaq consists of 17 studio apartments and currently also includes residents without a
home (due to fire, domestic violence, or for default on rent payments for their homes). The

32
Kangiqsujuaq residence is divided into two sections, each able to house three persons. One
section is reserved for elders and another for persons with disabilities. Each section has a shared
kitchen and living room.
Health care centers in each community are equipped with materials that may be needed
by families (e.g., pads, beds, wipes, urinals, chairs). If needed, nurses provide training
and support to families concerning the administration of medications, whether orally or
intravenously. Seven of Nunavik’s larger communities have home care nurses who
serve as the primary contact for families providing EOL and palliative care. In smaller
communities, the nurses assume this care as within the context of their enlarged role
mandate. At times, supplemental nursing staff had been sent into communities where
work overload did not allow nurses in the community to simultaneously meet the needs
of CLSC patients and homebound palliative care patients and their families.
The health care providers in Nunavik assumed a wide variety of responsibilities. Their
interaction specific to EOL care is as follows:
1. Physicians
Physicians were each assigned communities for whom they served as primary care physicians.
Some lived in the community to which they were assigned; others flew in to communities once
per month to provide care. After an initial assessment, the physician would refer the patient to
specialists in Montreal. These community-based physicians may have been required to inform
patients and/or their families of test results if this had not been done in Montreal. They were also
directly engaged in EOL care planning discussions with families. Full time physicians were
hired in communities when the population reached 900. Physicians varied in the amount of
palliative care training that they had received, dependent on program of study and personal
interest.
2. Nurses: Clinical, Enlarged role, and PLA
Clinical nurses were hired to work in inpatient
health care settings, collaborating with onsite
physicians in providing care. They were engaged
in 24 hour care of patients who had been admitted
for EOL care.
The CLSC also had “enlarged role” nurses,
meaning those working in centers without
inpatient services. Enlarge role nurses worked 9-5
shifts from Monday through Friday (in actuality,
their hours often extended beyond this) and rotated
the responsibilities of being on call. In small
communities, two nurses were present and so they
rotated being on 1st or 2nd call and were never fully off duty. Further, working hours may have
been significantly extended when providing both routine and emergency after-hour care. On
occasion, when a patient required palliative care and the existing caseload of community nurses
prevented them from being able to provide the needed services, a surplus nurse had been sent to
a community.
Each time we are here, we
push limits to exhaustion,
physical and mental… you
have to be really balanced
and really well with yourself.
(Nurse)

33
Enlarged role nurses performed initial evaluations and participated in home care assessments.
They would treat terminally ill patients according to the directives of the community physician or
Southern specialist. These nurses were responsible for administering palliative care protocols
and as such, they offer instructions and materials to families who choose to provide EOL care in
the home.
Nurses recently trained had 3.5 weeks theoretical training, 1.5 weeks rotations in the inpatient
health center and 1-2 weeks of community training before they assumed their full time position.
Until now, training for nurses in palliative care had been minimal. Due to the nature of their
work in communities, nurses preferred continuing education in areas of trauma, emergency and
paediatric care. However, some nurses had gained a level of expertise in palliative and EOL care
while working in the South.
PLA (Patients with loss of autonomy) nurses were engaged in seven communities throughout
Nunavik. They supported patients who have experienced either temporary or permanent loss of
autonomy and who are being cared for in their homes. Patients needing assistance from PLA
nurses included those who had recently undergone surgery, those with intellectual or physical
disabilities, and patients needing EOL care. When PLA nurses were present, they assumed the
responsibilities of doing home assessments, at times in collaboration with the local social
workers. These assessments screened for physical, social and psychological barriers in providing
at home care. When caseloads were not overwhelming, the PLA nurse would also conduct home
assessments with all community members over the age of 60, examining current states of health
in order to anticipate future long-term care needs. Some nurses provided their phone number
outside of their scheduled 9-5 working hours in order to remain available for a family providing
palliative care.
3. PLA interpreters
PLA interpreters assisted in the delivery of home care through interpretation services and
through providing guidance to newly arrived PLA nurses concerning the socio-emotional,
relational and physical environments of patients. Depending on the community, the interpreter
would also assist in the coordination of community family workers and assist with patient record
keeping.
4. Family workers
Under the supervision of the CLSC nursing staff, Inuit family workers provided home-based
patient services such as cleaning, bathing, and cooking depending on the need. Within the
context of their job, family workers would also be assigned to assist families in providing EOL
care. Services offered by family workers varied considerably between communities as some
communities had challenges finding employees to provide this service.
5. Community living and wellness workers
Wellness workers were employed in each community to offer health promotion and prevention
services. As Inuit community members, their tasks were quite varied from one community to the
next depending on the interest of the workers and the needs of the community. Specific to EOL
care, wellness workers would visit bereaved families and provide them with food or gift

34
certificates from the local co-op store to the families. Wellness workers also made public health
announcements through written materials or FM radio broadcasts. These announcements
included information concerning elder awareness day, elder abuse and prevention messages
related to specific chronic illnesses.
6. Social workers and social assistants
Social workers (licensed and almost exclusively Qallunaat) and social assistants (Inuit located in
the community) would get involved in EOL care through participation in home care assessments,
delivering needed equipment and supplies, participating in family consultations and providing
support services. Their engagement was limited, however, due to heavy caseloads, more urgent
demands in the community and lack of training in psychosocial interventions. Social workers
stated that, occasionally, community members would consult them to speak about grief issues.
However, they stated that, as they have little time and no training in this area, they were limited
in what they could offer. In addition, some noted that social workers were associated with the
department of youth protection and the removal of children from their homes. As such, people
would often hesitate to confide in them. In Kuujjuaq and Inukjuak, PLA social workers were
appointed to work specifically with persons with loss of autonomy. In terms of EOL care, they
would manage the budget of clients who were either mandated or who volunteered to have this
outside involvement. The latter required collaboration with a curator from Montreal. They also
participated in home assessments, responded to emergency food requests and communicated
with liaison nurses in Montreal concerning patient care.
7. Northern attendants (interpreters)
Northern attendants (interpreters) performed a variety
of tasks in the health centers. They would do intake
with patients, read vital signs, sterilize materials,
clean, schedule appointments, organize charts and
records and provide interpretation services.
According to the Northern attendants with whom we
spoke, their primary encounters with EOL care
occurred when they provided interpretation services
between patients/families and physicians/nurses. Of
note, they consistently self-identified as “interpreters”
and not as “northern attendants.” When asked about
this, one interpreter stated that the interpreter portion
of her job was both the most difficult and most
important aspect of her tasks.
8. Escorts:
Escorts accompanied patients to their appointments to inpatient health center and hospital
settings located outside of the community (e.g. patients who had experienced loss of autonomy,
who had linguistic barriers, or who were physically fragile). Family members who served as
escorts were given free transportation and free room and board in the transit housing affiliated to
the health center or hospital. If family members could be found to fill this role, another
individual would be hired by the health center to accompany the patient. Tasks of escorts
If you can count on
each other, if there’ s
a positive morale, if
you can work
together, that makes
a difference
(Nurse)

35
included bringing patients to appointments and providing personal care if the person resided in
the transitional housing.
7.4 Challenges and variables in CLSC inpatient and outpatient care
Nurses, physicians and northern attendants (interpreters) were the frontline workers in providing
EOL care in the CLSCs. These participants discussed how offering EOL care in Northern
contexts posed a unique set of challenges and that successful care and communication depended
on several factors. As the question of communication is of widespread concern for professionals
working in Northern contexts, section 9 is devoted to this subject.
7.4.1!Variables!for!nurses/physicians!
Nurses and physicians have indicated that several factors influence their ability to provide care in
general and EOL care services in particular.
1. Degree of trust
The trust that had been established between physician and nurse and family/community was
critical to EOL care in Nunavik settings. Misunderstandings concerning the progression of a
patient’s illness, confusion concerning EOL care
choices, and general mistrust of Qallunaat could
shape the reactions of families to nurses and
physicians providing treatment or advice. On the
other hand, once that trust had been established, the
difference was felt on both sides. One PLA nurse
stated that it took three years of living in the
community before she felt that she had been
accepted into people’s homes. As a long term PLA
nurse, trust had grown to the extent that families had
thanked her in person or on the radio for the care
that she had provided.
2. Access to palliative care educational
resources
Access to training, personal consultation and
materials also served as a variable in EOL care delivery. In small northern communities,
incidences in which palliative care expertise was needed may have been relatively rare, and
knowledge that had been acquired could be forgotten. Consequently, physicians and nurses
needed resources to meet EOL patient needs on a case-by-case basis. One physician described
how he was left to his own devices to determine treatment for the diversity of symptoms that his
patients had been suffering with at the end of their lives. Looking back on this experience, he
felt that had he access to training resources concerning pain management and controlling side-
effects, he could have prevented unnecessary pain and distress for his patients during the dying
process.
3. The duration of care
Qu’est-ce qu’on donne,
qu’est-ce qu’on donne
pas…Tout le monde est
un petit peu insécure à
ce niveau-là. Ce n’est pas
quelque chose qu’on
maîtrise bien dans le
Nord. (Nurse regarding
palliative care protocols)

36
As with families, nurses and physicians became fatigued by the round-the-clock care that was
often required in providing palliative care. The ability for nurses and physicians to care for
patients in the home depended on the personnel resources, especially if a patient required long-
term care. Until now, nurses had reported that this event of providing palliative care was rare,
though they anticipated that as the population in
Nunavik increased, this would change. In cases
where the duration of intensive EOL care was
lengthy, additional nursing support was provided.
4. The preparedness and capacities of family
members
Nurses told us that the more the family was able to
directly contribute to the care of the patient in terms
of creating a comfortable environment and
implementing interventions to alleviate pain, the
more comfortable the EOL process was for the patient. To encourage this participation nurses
would often come to the homes and invite family involvement in palliative care. Those who did
so were met by families with various degrees of preparedness. This included preparedness in
terms of knowledge concerning death, dying, EOL care options, the level of organization
required to care for a patient, and emotional and physical capacities needed to respond to the
patient. This also included differing levels of desire to invite a Qallunaat nurse into the home,
especially if the nurse had only recently arrived.
A nurse recounted an incident in which a family member returned to her community for
palliative care. This was done at the request of the family following several weeks of
hospitalization in the South. The patient’s health had deteriorated rapidly during her absence,
and had clearly lost much weight and strength. The family was shocked when they first saw her
on the stretcher at the airport. Some family members reacted to their distress by directing
hostility toward the nurses providing care, one who was new to the community. One nurse
described her perceptions about what transpired:
Rendu au village les habitants du village ont été très choqués je pense de voir l’était dans
lequel la femme était. Ils ne s’attendaient pas à ça. C’est sûr qu’en phase terminale elle
avait perdu beaucoup de poids, avait l’air très fatiguée, pas de force, difficulté à bouger.
Donc ils ont été très fâchés contre nous, contre l’hôpital de l’avoir abandonné là à ____
(sa communauté) là. Eux auraient aimé
comme avoir une salle de soins intensifs
chez eux là avec du personnel à temps
plein mais dans le fond l’infirmière n’était
pas là à temps plein là. Elle allait comme
à toutes les heures ou tsé si jamais il y
avait quelque chose la famille pouvait
l’appeler mais elle ne dormait pas dans la
maison là. Tsé fait qu’eux ont très mal
réagit avec des bêtises sur la radio contre
les infirmières pis des menaces. Tout ça, ça
Aimer dans l’amour c’est
facile; mais aimer dans la
haine, puis la
compréhension profonde,
c’est un grand défi
(Nurse).
Here we do it we have
with what we can but
have a criminal lack of
support for the family.
(Nurse in Nunavik)

37
l’a été très difficile pour le, le staff là de passer au travers ça.
The nurse who told the story theorized that: a) had the nurses prepared the family for the changes
that occurred in this elder, b) had they reminded family members ahead of time of the elder’s
stated wishes to return home, and c) had they prepared families and communities for the feelings
of grief they might feel in seeing this elder, this mutually-distressing experience may have been
avoided.
5. Psychosocial support and coping skills
Nurses and physicians who worked in Northern contexts were stepping into a socio-historical
context outside of their making. Stories of colonial practices such as residential schools, the
displacement of families and communities, exploitation in trade and commerce, the devaluation
of Inuit knowledge and the introduction of widespread disease resided in the collective memory
of communities.
Nurses described how, coming to the North, they had a two-day training specific to preparing for
their transition to Nunavik beforehand. On the first day, they were given an overview and
history of the geography and culture of Inuit people. The second day, they were educated on
which supplies to bring into Northern communities. However, many of the nurses with whom
we spoke felt they were not adequately prepared for work in Northern conditions as they were
not made aware of the degree of trauma and violence that they then encountered in communities.
They did not feel prepared for the fact that they would often be alienated in the communities they
entered, and at times met with verbal hostility. And they were not aware of the lack of
psychosocial and mental health services in Nunavik communities and the direct impact this
would have on their work.
Nurses identified that personal capacities to deal with stress and existing support structures were
key in their ability to provide care. Supportive collegial relationships with other care
professionals in the CLSC, both Inuit and Qallunaat, were valued. A supervisor who was aware
of the realities on the ground and who could provide a forum to support nurses in the stress of
their daily roles could also be a protective factor against nurse burnout. Nurses also described
how personal self-care strategies - whether stress reduction activities (e.g., several nurses had
skidoos or four-wheelers to participate in outdoor activities and enjoyed hiking and fishing) or
spirituality (often in the form of personal practices) - were key to their ability to remain in
communities. The development of social relationships with colleagues and with Inuit
community members outside of the health care system were also protective factors for nurses in
CLSC contexts. In addition, a flexible work program that permitted nurses the option of two or
three months on duty with one or two months off, as well as independent rather than transitional
or shared housing, was cited by nurses as crucial to their self-care.
7.4.2!Variables!for!Inuit!professionals!in!providing!EOL!care:!!
Observations and dialogues with Inuit professionals employed by the CLSC’s provided insights
into the variables that influence their ability to perform their tasks at large, as well as their
engagement with EOL care provision.

38
1. The degree of training in bereavement care and in the dying process
Participants indicated that regular training had a direct impact on the level of comfort they had in
working with patients and families. In other words, the process of professionalization was
valued. Importantly, as with the Qallunaat employees, the Inuit expressed a significant gap in
their training to address the grief and bereavement needs of individuals and families.
2. Moral distress
The degree of internal conflict experienced by Inuit professionals was also a variable in their
ability to meet the needs of EOL care patients and families. This was especially true for
interpreters who found themselves caught between the expectations of physicians and nurses and
that of Inuit patients and families. For example, several interpreters recounted their distress
when asked to communicate what the physician saw as the expected lifespan of a terminally ill
patient. From a cultural level, this communication regarding death had been reserved for specific
persons in the community called Tutsalukkajiit and was not to be communicated by interpreters.
From a spiritual perspective, many believed that only God knew when someone would die, so
they should not communicate a terminal prognosis including the months or years a person had
left to live. This moral conflict in how to respond posed significant stress and many interpreters
felt alone in negotiating these experiences.
It was also difficult for interpreters to discern whether and how to translate a hostile reaction of a
patient or family to a nurse or physician. At times, no good option appeared to exist as they felt
the need to communicate literally but also respect the feelings of the nurse or physician.
Communication concerning the use of morphine in the context of palliative care also served to
create internal distress for interpreters who believed personally that this was a form of
euthanasia. These communication issues are discussed in more detail in sections 9, 10 and 11 of
this report.
3. Stress reduction strategies and psychosocial support
As with Qallunaat care providers, coping capacities and psychosocial support were key to the
capacity of Inuit professionals to do their work. This group described themselves in a difficult
position. Their professional mandate required them to respond to the needs of the family and the
community concerning bereavement and EOL care. However, as community members, care
providers often had personal relationships with the deceased and the family. Consequently, they
would, at times, be grieving themselves. This dual relationship, being a member in the
community and yet serving a professional role was thus difficult to navigate.
Self-care practices cited by these professionals included time spent out on the land to engage in
camping, fishing, hunting and berry picking, trips to the South for a change of environment.
They also included communal practices such as worship time in church and prayer meetings.
Finally, social time spent with families and community members was also key to addressing job
related stress.
4. The integration of Inuit knowledge and rhythms
In addition to the Northern attendants, wellness workers, family workers and préposés aux
bénéficiaires supported patients and families providing EOL care. As most of these employees
had received little or no formal postsecondary training to prepare them for their tasks, they relied

39
on education and mentoring in their work environments. Community professionals who spoke of
feeling competent in their workplace emphasized how it had been important for them to integrate
Inuit practices with Southern or First Nations models of healing and care. Some recounted what
they had learned from what they saw as helpful (although brief) trainings concerning grief and
bereavement such as the Dialogue for Life conference held in Montreal. In 2015, an adapted
version of this, the Puttautiit Conference was held in Puvirnituq. Plans are to offer this
conference on an annual basis, rotating between Nunavik’s communities.
One of the difficulties recounted by mothers of young children who were employed by health
centers was that the training currently offered was contrary to their family’s rhythm and needs.
Training took them away from their families for five or six days at a time. This was due to the
fact that many were regrouped into one community for a weeklong session. Another challenge
was the isolation that many faced in returning to their community when they attempted to
integrate what they had learned. However, those who had access to the support or mentoring of
colleagues and supervisors on a weekly basis described being satisfied with their work.
7.5 What can be done? CLSC care
Health care providers, both Inuit and Qallunaat, drew on their experience of working in the
CLSC’s in Nunavik communities to discuss changes that would contribute to the development of
EOL care services.
7.5.1!Nurses/physicians!
1. Ready access to updated palliative care
resources and training
Depending on community demographics, nurses and
physicians would have a few years in between caring
for a palliative care patient. Considering the high rate
of turnover of medical personnel, the emerging science
of palliative care, and the limits of memory, many
nurses and physicians suggested they needed access to
updated videos, written materials and individual
consultation on a case-by-case basis. Individual
consultation would ideally be with a palliative care
specialist working for the MUHC in Montreal because
this is where patients would be sent. Also, this
specialist would haveworked in Nunavik, and thus
have some understanding of the key contextual factors
in which nurses and physicians provide care.
2. Palliative care oncall with a ‘fly in’ team
Others suggested an oncall ‘fly in’ team who would provide services in communities when
palliative care expertise is needed. Suggestions for this team included a physician, nurse,
bereavement counselor, Inuit elder, notary, and legal counsel. These specialists would be flown
En cas de soin palliatif,
c’est jamais juste la
patiente. C’est la
famille et la patiente..
En phase terminale, tu
marches tout le temps
sur des œufs. On sait
jamais le problème qui
va sortir (Nurse)

40
into communities as the need arose, prepared to implement palliative care protocols with
backgroun knowledge of Inuit care contexts. However, health care providersalso expressed
concern that this approach would not facilitiate trust between specialists and patients and their
families. This trust was a critical factor for successful EOL care in community contexts.
3. Communication guidelines
Physicians and nurses suggested that guidelines concerning communication with Inuit family and
community members would be helpful in providing EOL care. Physicians and nurses negotiated
relational and communication territories fraught with complex moral choices and potential
misperceptions. Section 9 will provide a more nuanced discussion concerning strategies of
communication that have been found to be effective by nurses and physicians.
4. Access to psychosocial support and services
Some nursing participants attributed the high turnover of nursing staff to be a direct result of
nurses not having a means through which to address the emotional impact of the suffering that
they encountered in their work as well as the isolation that they experienced living in remote
communities . Nursing participants indicated that there were moments when they needed to
reach out to speak with someone. They felt discussion forums or access to individual
consultation could fulfill this need. One on occasion, a psychologist was available by telephone
for nurses needing to debrief.
5. Mentoring models of care which draw on modeling rather than telling
Models of transmitting information which draw on side-by-side mentoring approaches rather
than top down teaching tactics were noted by nurses to be effective in enabling family members
to care for patients at the end of life. In a mentoring context, family members and préposés aux
bénéficiares were invited to participate in care, thus observing washing techniques, the turning of
patients, feeding with small portions, speaking to the patient, moistening a patients lips, and so
on. Nurses recommended that this mentoring approach be adopted to guide families in caring for
members in their homes and inpatient care facilities.
6. Emergency care and advanced
planning wishes are made readily
accessible
Physicians and nurses did not always
have ready access to information
concerning previous conversations with
patients and families concerning EOL
care. This may be due to the fact that the
conversation happened in a hospital far
from the community, that the files were
not transmitted or were delayed, or that
advanced care planning discussions had
never occurred. Ideally, patients over 65
and concerned family members would
participate in these dialogues before a
crisis occurs. This would prevent
Sometimes there is a great lack
of understanding on the
patient’s part which contributes
to their receiving ‘bad care’.
There is room for more
resources that help to inform
or educate the public of how
medical interventions actually
take place. (Interpreter)

41
unresolved conflicts and grief clouding the decision-making process.
7.5.2!Inuit!professionals!
1. Exchange of competencies.
Recognition of existing competencies balanced with ongoing training and mutual-mentoring
opportunities has been central to a successful collaboration between Inuit and Qallunaat health
care providers. In this light, some Inuit professionals suggested that a mutual educational
approach be implemented in Northern communities, one in which Inuit are training Southerners
concerning existing community health practices and initiatives, protective factors, cultural norms
and successful communication strategies. In exchange, they would receive training concerning
medical, social and psychological models that may be adapted to Inuit communities.
2. Access to bereavement care and psychosocial support
Many with whom we spoke recounted their own stories of loss and grief. Some described
having found healing while for others their grief remained unresolved. To be present for
individuals, communities and families in EOL care, these professionals also expressed the need
for psychosocial support from community insiders and outsiders. Who they relied on depended
in part on their trust of community members to remain confidential.
3. Training needs
Training requests related to EOL care included: a) training in dementia prevention and
intervention; b) increased linguistic and communication resources (elaborated on in section 10
below); and c) exchanges with other Inuit across the circumpolar regions who are also
developing EOL care services
4. Public education
An option was raised to use the FM radio to sensitize the public concerning the role of the
interpreters in health care provision. This could potentially alleviate some of their stress as
patients and families will become more conscious of the challenges that interpreters themselves
face. In addition, it was noted that the more the public was informed about disease and
interventions, the more they would be prepared for what the interpreter may need to say. This
can also be done through radio or Facebook.
8. The MONTREAL CONTEXT OF CARE
8.1 EOL care facilities and providers:
EOL services are provided at the McGill University
Health Center (MUHC) in Montreal. Though we did
not meet with all departments involved, we spoke with
health care providers located in a number of sectors.
8.1.1!Pain!Management!Clinic!
We help people with,
“Now that this has
happened, what do
we do now? What
does this all mean?
How does this
change my life?”
(Spiritual advisor)

42
The Outpatient Clinic for Pain Management accepts patients from Nunavik. Their
interdisciplinary team approach to pain management includes an anaesthesiologist; palliative
care physician, radiation-oncologist and a nurse. Assessment includes a physical exam,
questionnaires, and a team review of patient records. Referrals are primarily from the oncology
department. Three approaches to cancer pain are offered: pharmacology, radiation and injection.
This pain clinic only rarely provides EOL care to Nunavik patients, however, given that most
terminal patients leave Montreal to die in the north.
8.1.2!Physical,!Psychosocial!and!Spiritual!care!
The MUHC has one adult palliative care unit where healthcare providers specialize in addressing
the physical, social and emotional process of dying. This includes attentiveness to family
dynamics and cultural considerations. In addition to the physicians and nurses providing direct
medical care, patients and families have access to social workers and therapists (e.g, psychologist
and music therapist) and spiritual advisors who assist in addressing psychosocial, relational and
spiritual needs. In this context, spiritual advisors often play an advocacy role with families and
patients. Further, they offer bereavement support into, such as offering a listening ear, praying,
and creating the possibility for families to conduct their own EOL rituals.
8.1.3!Paediatric!services:!!The!Northern!and!Native!Child!Health!Program!
Located within the paediatric services of the MUHC, the Northern and Native Child Health
Program staffs physicians as well as a nurse practitioner. Working in conjunction with the
community liaison nurse at the Module du Nord Québécois (MNQ), the nurse practitioner
facilitates the care for Nunavik children, is available to respond to questions, clarifies
misunderstandings and refers children and parents to additional services as needed. This nurse
practitioner also facilitates communication between specialists in the South and physicians in the
North and assists parents in the decision-making process, providing psychosocial support to
parents. Nunavik communities are scheduled to receive a weeklong visit from a paediatrician
within this program two times per year. Instances of Nunavik children dying from a disease or
illness are rare. In the few instances this has occurred, attempts were made to send children
home for EOL care.
8.1.4!Module!du!Nord!Québec!(MNQ)!
The MNQ is a residence for Inuit patients and their families coming from Nunavik. The MNQ
operates within the context of the Inuulitsivik health care center. Locally, the director and
nursing supervisor are in charge of the liaison nurses and interpreters. Eight interpreters working
throughout the service corridors of the MUHC. They work day and evening shifts with one
interpreter on call each night to either provide interpretation by phone or to come into the
hospital. There are also eight liaison nurses working to coordinate care for patients who arrive in
Montreal for inpatient and outpatient care. Nursing tasks include facilitating communication
between North and South health care providers, explaining medical procedures to patients and
families, ascertaining that patients understand what physicians have communicated, responding
to patient and family questions, and advocating for patient care as they negotiate the Southern

43
and Northern health care systems. Attempts are made to match nursing staff with the
communities with which they are familiar.
The MNQ also has workers called ‘Responsables d’unité de vie’ (RUV). Their job is to monitor
the patients entering and leaving the center, coming and going, including those being transferred
to their appointments. RUVs inform patients of the rules of the MNQ, provide an identity card,
show patients to their rooms and provide meal cards. They also deal with basic care needs (e.g.,
milk for an infant) and security.
The preposés en établissement nordique are Inuit employees who are also available to interpret
at the MNQ as needed. They remain onsite at the MNQ with patients and families. They are
directly involved in meeting the daily needs of families and patients receiving EOL care in
Montreal for short or extended periods of time.
8.1.5!Social!services!
The MNQ has an Inuit community worker available to meet with patients and families who
request additional care and support. In addition, the Children’s Unit of the hospital has a
parttime social worker working in the Northern and
Native Child Health program. Tasks include providing
psychosocial support to families, linking families with
needed services, coordinating care, and meeting with
hospitalized children.
8.1.6!Escort!services!
Patients are permitted to have an escort accompany them
from the North to Montreal if their health is critical or
fragile, or if they do not speak English or French. While
family members may serve as escorts, this is not always
possible and so an outside escort may be hired. For
patients with extended stays in Montreal, escorts are
requested to remain a minimum of two weeks for long-
term needs. Escorts who are not family members are
paid $65/day in addition to being provided with airfare, food and lodging.
8.2 Challenges and variables in providing care in Montreal
Patients, families and health care providers face a variety of challenges when EOL care is
provided in Montreal hospital settings. Inuit and Qallunaat participants offered the following
perspectives on this care.
8.2.1!Challenges!for!patients!and!families!
1. Displacement and homesickness
Physicians, nurses and family members described how the geographical distance between
patients in the South and their family and friends in the North profoundly impacted those
You (Nunavimmiut)
are very stressed
because, “when am
I going back home?
What is happening
to my daughter
back home who’s in
her third trimester
of pregnancy?”
And then you’re

44
receiving care in Montreal. Patients would be alone when a terminal diagnosis was conveyed
and thus forced to deal with the distress on their own if family members and decision makers
who would otherwise provide support and clarity were absent. One patient described feeling so
profoundly disoriented when she heard her diagnosis that she was unable to physically see well
enough to find the phone to call her family. For escorts and patients alike, pre-occupations and
concerns about loved ones could contribute to both emotional and physical suffering.
2. Interpreter and escort competency
When family and friends were absent, patients could heavily rely on interpreters and escorts for
emotional care. Patients described how essential it was to be able to trust these individuals and
the important role they played during this vulnerable time. Conversely, if these supports did not
follow through with their responsibilities (e.g., we heard stories of escorts and interpreters being
sent home early for unprofessional behaviour), patients experienced distress.
3. Psychosocial state of patients and caregivers
The compounding factors surrounding care during the terminal phase of life significantly
impacted the trajectory of EOL experiences. Health care providers and family members
described how patients and family members, who already
struggled to cope (i.e., addiction, aggression, and
withdrawal), were at risk when grieving. For example, a
woman spoke of her husband’s four-day silence on learning
that he had terminal cancer. Her invitation to communicate
allowed him to express his own feelings of sadness in not
seeing his grandchildren grow up. A social worker spoke of
a mother who was often inebriated when visiting her child,
relating this to her perception that her grief had
overwhelmed her capacities to cope otherwise.
4. Continuity of care
Patients were also affected by the relationship that they had established with specialists and
nurses. For many, the liaison nurses based in the Montreal hospital centers and the MNQ had
been a supportive presence. Continuity of care between North and South health care providers
also served as a variable in care as clarity in this communication had been critical for patients
and families seeking to make EOL care
decisions.
8.2.2!Challenges!for!health!care!providers!
1. Treatment choices and interventions
Physicians and nurses discussed how
advancements in medical science led to more
nuanced and complex treatment choices being
offered to patients. It became more difficult to
explain the impact of treatments, potential side
effects, and quality of life. Presenting these
choices was especially difficult with cultural and language differences between patient and
physician or nurse. It was also difficult for patients and caregivers to implement complex
Je pense que le
pire scenario, c’est
de mourir à
Montréal
(Physician)
(We) are getting better at
helping that person accept
that their body is at a point
where prolonging it is only
going to lead to more
suffering. (Physician)

45
medication directives where they were required to take different doses at differing frequencies.
Nurses also described how complications occurred when patients chose to discontinue
medications because their symptoms had abated without telling the nurse.
2. Communication and interpretation
Physicians described much uncertainty around interpretation. They were often unsure if either
their words or their patient’s words were being fully and accurately translated. They noted, in
particular, when emotional reactions in patients were not interpreted back to them, and when
interpreter conversations were significantly longer or shorter than the words stated by themselves
or patients. They did not always ask about this to the interpreter in order clarify what they
perceived. An interpreter in whom they had confidence was considered valuable.
3 Symptom control
A patient’s willingness and ability to acknowledge physical or emotional pain greatly impacts
health care providers’ accuracy in evaluating the need for further medical intervention and
psychosocial support. Traditionally, stoic reactions to pain and suffering had been valued in
Inuit cultures and thus pain assessment was difficult. Physicians mentioned that, more recently,
this was becoming less of an issue.
4. Standardization of charts
Montreal health care providers have found continuity of care complicated by the fact that the
Ungava coast communities use different charting formats in patient records than the Hudson
coasts. Standardization between coasts would facilitate clarity in communication.
5 Awareness of Nunavik context
Health care providers have differing levels of awareness concerning Nunavik cultural and social
contexts. Those who have worked in Northern communities or spent more intensive time with
Inuit patients, describe having learned through their work. Examples included: a) using relevant
visual metaphors when describing illness; b) reducing or consolidating appointments given the
impact of North/South travel; and c) defining family based upon Inuit concepts of extended
family (e.g., providing more options when legal consent is needed).
8.3 What can be done? Montreal care
Patients and health care providers offered potential solutions to the challenges discussed above.
Patient/family recommendations tended to center around concerns about communication and
accompaniment. Montreal health care providers addressed communication and structural
challenges.
1. Recommendations from families
Family members who are geographically divided between the hospital in the South and
community in the North need to consult each other concerning EOL care treatment options.
Though the telephone is used, only two people speak at a time. They asked if videoconference
technology could be offered to families to facilitate more effective communication.
Patients who had negative experiences with escorts suggested public education via FM radio in
their communities in which health centers clearly outlined the requirements of the escorts. Their

46
hope was that this would help ensure only the truly dedicated would decide to accompany
patients.
2. Montreal physician and nurse recommendations
Recommendations by health care providers were motivated by a combination of humanitarian
and financial concerns. For example, a physician, who had been working with Inuit patients in
the South for many years, provided a long-term perspective concerning cuts in services for Inuit
patients., In his opinion, cuts in services would actually cost the hospitals more money in the
long run. Following is a list of suggested changes from Montreal-based physicians and nurses.
It should be noted that some of these measures are already underway:
a. Reduce the number of patient appointments in Montreal by: a) engaging Northern
physicians to develop follow-up care in tandem with Southern specialists; and b)
screening patients more carefully before they are sent to Montreal, especially those
whose appointments had been set up months in advance and whose symptoms may have
changed. This may include reinstating the role of the medical coordinator in Montreal
who had once screened for appointments.
b. Develop a standardized charting system between the Hudson and Ungava coast.
c. Increase involvement of pivot nurses at the MUHC who would be available to respond to
questions by patients and family members, and result in less confusion and anxiety
related to medical procedures.
d. Add a social worker to work with families at the MNQ to provide psychosocial support
and to link families to resources in the community.
e. Provide communication resources and training to Montreal physicians who work
regularly with Inuit patients and interpreters. This would potentially reduce confusion
leading to family and patient distress or unwanted medical procedures.
f. Provide telecommunication options for patients and families maintaining contact with
family members in the North.
g. Add an Inuit patient navigator such as is offered for Cree patients to introduce Inuit
patients to the physical and cultural climate of the hospital.
h. Provide mandatory training for escorts hired by the health center to prepare escorts for
perform their responsibilities and increase their pay to match the demands they face.
9. COMMUNICATION IN EOL CARE
When medical test results indicated that a patient was in the terminal phase of their
illness, family members were often invited to meet with the physician and other health
care workers involved (e.g., specialists, nurses, social workers, spiritual advisors, and
interpreters) to discuss patient and family wishes concerning EOL care. When these
meetings took place in Montreal, the people who had escorted the patient would be
present. If the EOL care planning meeting took place in the North, extended family
may have been included along with physicians, interpreters, nurses and social workers.
The decision about where the patient would be cared for depended on three primary
factors: a) the physical condition of the patient and readiness for transfer, if desired; b)
the availability of hospital beds in Montreal, Puvirnituq or Kuujjuaq; and c) the

47
capacity for families to provide care in their homes. To determine family resources,
nurses and/or social workers in the community conducted a home care assessment.
This assessment identified the physical and psychological state of the patient, the
suitability of the physical environment in the home, and the fit between care-provider
capacities and patient needs. If the assessment results indicated the physical and
relational environments were favourable to home-based care, nurses in the communities
would meet with the families to prepare the home for the arrival of the patient.
9.1 Communication: Northern and Southern health care providers
In Northern contexts, nurses and administrative technicians in the health centers coordinated
North-South care. They ensured that the necessary pre-travel procedures had been done,
arranged for escorts, arranged transportation, and ensured that the necessary documentation
accompanied the patient. Liaison nurses in the South: a) ensured that patients attended
appointments, b) arranged for interpretation and transportation services in the hospital, c)
coordinated flights back to the North, d) arranged for escorts, e) ensured that patient records
were sent to the North, and, f) worked with coroners or morticians in the South in the case that
the body needed to be transferred. The coordination of all these tasks was fraught with
communication challenges.
9.1.1!Challenges!in!North/South!communication!
Based on the accounts provided by nurses and physicians, the challenges in communication
between North and South were largely related to institutional practices. We met with several
professionals who cared deeply about the work that they did and worked long hours to
accomplish their tasks. Yet some felt dissatisfied with their job as the working conditions made
their tasks difficult to accomplish and they felt that they could not provide the level of patient
care that they wished to provide.
1. Technologies
Many nurses and physicians stated that scanning records and sending the information through
computers has improved communication concerning
patient care between Northern and Southern health care
institutions. The challenges that remain were largely
related to personnel shortages and turnover. Phone
communication between physicians in the North and
specialists in the South could be difficult to coordinate as
each were pressed for time. As a physician noted, “ça a
l'air d'être le bordel dans le Sud. Ils ont tellement de
monde à voir, c'est de plus en plus difficile. On attend
longtemps sur la ligne.”
2. Workload and holistic patient care
Several physicians and nurses in the North commented
on their positive experience with nurses at the MNQ who
were readily available and responsive in communication.
If a patient has a
problem, they come
to us because they
have no one else to
go to… we listen, we
give our opinion, but
we don’t have the
time! (Nurse)

48
However, it was noted that the amount of phone exchanges had decreased as caseloads for the
liaison nurses in the South had increased. This resulted in occasional breakdowns in
communication such as prescriptions being communicated late, appointments being delayed,
specialists in the South not receiving a patient’s paperwork from the North, discharge
instructions being delayed and patient transfer times between the South and North being
extended. As one participant noted, when MNQ nurses had more time, “c'était beaucoup plus
agréable parce que t'avait une information… l'infirmière pouvait communiquer directement. Il y
avait vraiment un lien.”
Eight nurses at the MNQ serve as liaisons between hospital centers, the CLSC in the South and
their counterparts in the North. As this report was being written, three of these eight nurses were
on sick leave and three of the remaining five nurses were agency nurses rotating through the
MNQ who had not necessarily established a relationship with patients, families or community
nurses. Some attributed this shortage of permanent staff to work-related stress, increase in
caseloads for MNQ nurses and consequent reduction in quality of services that they felt they
could offer, and reduced work satisfaction. Further, additional psychological/social support for
patients and families were noted as a significant need for this population so that these needs
would not fall on the nurses, already overloaded with tasks. One nurse estimated that only about
6 out of 10 patients were able to follow their program of care in Montreal and to keep each of
their appointments. The remainder required additional interventions from the liaison nurses in
order to follow through with their medical intervention. Depending on these
psychological/relational needs, patient concerns could consume much of a nurse’s day and
prevent the completion of assigned tasks,
such as the transmission of medical
records to communities in a timely
manner.
Patients and families also note the
increased workload of nurses at the
MNQ. One Inuit participant described
with empathy how this was clearly
evident as the MNQ nurses with whom
she met for her consultation were behind
on their list of tasks each day and
attempting to balance the needs of several
patients during their meeting with her.
The two nurses who had been assigned to
her community were absent for the
several weeks while she was in Montreal,
one on sick leave.
Nurses and physicians also indicated that
North/South communication was
impacted by the high turnover rates of
medical staff in community contexts.
When Northern nurses are rotating through a community or are themselves extremely busy, they
Dans les départements qui
offrent ce service d’infirmière
pivot (Children, Psychiatry) nous
voyons beaucoup plus rarement
des problèmes de
communication. À mon avis, plus
de 50% du travail est ainsi
simplifié et nous pouvons enfin
nous concentrer sur les soins
aux patients plutôt que sur les
dédales administratifs. Le
sentiment du travail bien fait
est un élément majeur à la
conservation de notre propre
santé mentale. (Physician)

49
may not always communicate the needed information to each other. Thus patients may be sent
to the South without having prepared for their procedure in advance. A patient may be sent back
North if accommodations in the hospital cannot be made. In situations where nurses had come to
know their patients and communities, the follow-up care was more consistent.
Nurses in Northern communities also spoke of a lack of personnel and an increasing number of
urgent cases seen in the clinic. As one nurse stated, “we often have the impression that we are
doing crisis management. Nurses described their bearing the burden of this suffering, whether
through aggressive reactions of patients and families or when patients required a listening ear
during their medical appointments. As on nurse stated, “It’s difficult to do a rigorous follow-up.
Everything around planning and paperwork is secondary.” In her experience, patient treatment
had been negatively impacted when booking appointments for assessments and treatment in the
South were delayed by the urgent care needs in the Northern clinic.
One nurse spoke of the multidisciplinary model of care in the South where physician, nurse,
psychologist and social workers came together to provide care. She compared this to Northern
communities where there was little, if any, psychological services for patients and families who
are going through the dying process. In her words, this reflected “a criminal lack of support for
the family.”
3. Awareness of Nunavik patient contexts
A physician’s lack of knowledge about Nunavik patient contexts can also contribute to a
breakdown in communication. EOL directives are not always clear between the North and
South. Nurses and physicians have noted that this may occur for three reasons: a) lack of clear
communication by physicians who themselves may be uncomfortable with death; b) a family’s
difficulty in accepting the news of a terminal diagnosis; and c) confusion caused by the
interpretation process between physician and patient. We heard stories of patients being sent
down South for medical interventions while the Southern physicians had understood that the
patient was in the North receiving terminal care. Confusion also ensued when physicians in the
South changed medication regimes without specifying the reason in writing, and patients might
not understand the changes. Consequently, directives can be unclear for northern-based nurses
to explain or follow. A final communication breakdown centered around physician’s lack of
awareness concerning the geographic displacements that patients experience each time that they
were sent to Montreal. They did not always realize that returning in three months for follow-up
care is a time-consuming and costly challenge (e.g., for patients absence from work and family
and for health centers flight fees), and poses physical and emotional difficulty for patients. In
addition, Montreal-based physicians may not have been aware that urging patients to pursue
aggressive and prolonged treatments in the South may not be what the patient desired. As one
nurse indicated, patients did not always feel comfortable advocating for themselves in these
instances, “to vocalize when enough is enough and choose to stay home.”
4. Timeliness
At times physicians waited too long to have a conversation with families about EOL care. As a
result, patients who would have preferred to die in the North became too sick to be transferred
back home by plane. Reasons provided for that hesitation included a physician’s lack of
awareness of the complexity of transfer, their reticence to speak openly of death to their patients,

50
their discomfort in working with interpreters or absence of having an interpreter, or their busy
schedules. In one such case, nurses in the hospital and MNQ advocated for the patient and
family, knowing their deep wish was that an elder would die in her home community. They
were not sure whether the patient would survive the voyage; she did and was met by a large
crowd at the airport.
9.1.2!Improving!communication!
Participants had several ideas about how communication could be improved. We have listed the
most common responses here.
1. Add liaison nurses to the MNQ and pivot nurses to departments in MUHC institutions
Some MUHC departments serve large numbers of Nunavik patients. Pivot nurses would
facilitate communications with patients, families and escorts while in Montreal. An increase in
liaison nurses would improve the quality and satisfaction of communication in North/South care
settings.
2. Increase social work personnel at the MNQ
The position of a full time social worker at the MNQ had been cut under former management.
Participants have noted that current plans for the MNQ include a room to isolate patients, escorts
or family members if alcohol use resulted in aggressive behaviour. However, some believed that
without simultaneous psychosocial support, such as that which had been previously offered by a
social worker, patients would be more quickly overwhelmed and rely on familiar coping
mechanism.
3. Provide a feedback forum for nurses
Nurses on the frontline of care have indicated that they do not have adequate opportunities to
discuss the realities that they face on the job. Several nurses spoke of how the daily crises that
they address kept them from taking the initiative to advocate for themselves. They would
welcome a forum where their suggestions could be received by administrators and policy-makers
in both hospital and community municipal contexts. In their experience, when supervisors and
administrators had solicited accounts of their experiences and responded with concrete action or
provided clear reasons for non-action, this had been deeply appreciated.
4. Increase Northern personnel: nurses and mental health workers
All professionals with whom we spoke recognized the difficulties of recruitment and retention in
Northern communities. Nevertheless, they ask that this increase in nursing staff remain an
objective of the health administration.
5. Provide geographic, historic, and linguistic contextual information to physicians
It was noted that the National Collaborating Center for Aboriginal Health had also highlighted a
lack of Indigenous cultural care resources in Quebec. In response, participants suggested the
following: a) Pivot nurses or interpreters become actively engaged in communicating cultural
factors in care for Inuit patients to physicians, b) Physicians receive a short written text outlining
cultural considerations, c) Medical schools become active in providing training to physicians
Canada’s Indigenous populations.

51
6. Shared methods of record keeping between Hudson and Ungava coast
Physicians and nurses noted that each coast had its own norms and systems of providing medical
care. Nonetheless, they suggest that, when possible, record keeping should be streamlined.
7. Arrange for teleconferences earlier in the patient process
It was suggested that if families and health care providers communicated about EOL care needs
before transfers back to the North had been confirmed, the family could have more time to begin
preparing (emotionally and physically) for different EOL care possibilities. They could then
become more actively included in decision-making, an important factor in their own grief
process.
9.2 Communication within patients’
families
Both Inuit and Qallunaat participants spoke of
their experiences in communication with Inuit
family members in the context of EOL care.
One of the biggest challenges is whether to tell
a patient about a terminal prognosis.
1. To tell…
Some patients and family members described
having had open discussions with each other
about cancer diagnosis, even when a terminal
prognosis had been given. This openness was
stated to be reflective of what several
participants had described as an acceptance of
death as being part of the rhythm of life. In
light of this acceptance, most elders clearly
stated their desire to die in their home communities. One participant described how her father’s
open discussion about his terminal diagnosis had been critical in helping the family to accept his
death from cancer.
In another case, an Inuk man whose wife had died of cancer had been engaged in his wife’s care
to the end. He described how their open communication with each other about her death had
also helped him prepare. They had shared their life memories together before she died, including
positive events and regrets. He also stated that his ability to accept his wife’s death was rooted
in a dream in which his wife told him that she would soon go far away.
2. Or not to tell…
Some family members expressed not wanting their
loved ones to know of a cancer diagnosis or to hear
the message from a doctor stating no more curing
measures can be taken. As one family member
If I have a cancer, don’t
tell me, I don’t want to
know. (Patient to nurse)
I’m sick again. I want to be
able to die at my house. I
don’t want to be stuck in
the hospital, being fed by
and trying to be kept (alive)
by, equipment… I know I’m
going, We’re all going to die
so I would like to die at my
house. (Daughter’s account
of father’s words)

52
stated, “you tell everything but not the ‘certain word,’” a reference to cancer. She described how
Inuit are concerned that the individual would give up and die sooner than they would otherwise,
stating: “some people, if you tell them right away, their strength is sunk.” Anecdotal evidence
provided by health care providers suggested that this may be in fact the case, especially for
elders. As a physician explained, some have seen enough pain and suffering and want to die;
others want to remain alive for their family. A nurse described how patients themselves had told
the physician that they did not want to know if they had cancer.
This “not to tell” decision also came from patients themselves. Physicians and nurses described
instances in which patients had not communicated their desire to discontinue treatment to their
families. In other instances, they had not told family members that a physician had said that there
was no more medical care that could be offered.
3. Self-care
Physicians and nurses commented on how their Inuit patients engaged in dialogue riddled with
laughter and teasing in hospital settings, even during tough circumstances. This levity was
interpreted by an experienced nurse as a coping mechanism as patients and families found
strength through humour.
Some patients also exercised self-care in requesting
interpreters to accompany them to appointments, even
though they spoke conversational French or English.
As one nurse explained, the presence of the interpreter
in these cases served three functions: a) to have
someone by their side when family and friends were in
distant communities; b) to explain unknown
anatomical or medical terms; and c) to have the
interpreter ask questions that may be too intimidating
to ask directly to a physician. One interpreter stated that many people were “scared” to ask
questions on their own. Depending on their relationship and availability, interpreters at times
also functioned as patient navigators and patient advocates.
9.3 Communication: Qallunaat physician and nurse and Inuit
patient/family
The communication between Qallunaat and Inuit concerning EOL care diagnoses and EOL
decision-making took place in the context of significant linguistic and cultural differences.
Nonetheless, those who had successful moments in these dialogues drew on shared human values
and forms of communication to establish trust and clarity in dialogue. Below we will discuss
some of the communication challenges faced by Southern-based health care providers and the
strategies that they used to address these.
9.3.1!Communication!challenges!of!physicians/nurses!
Conversations about EOL care were layered with nuances. Patients were asked to make choices
about complex treatment options concerning care. As a physician explained:
Yes I speak English
but I don’t
understand. (Patient
to nurse)

53
C’est souvent pas clair pour les gens, c’est difficile à expliquer...toutes les nuances qu’on
peut faire. .. On l’envoie-tu à Montréal ? On l’envoie-tu dans l’hôpital à Kuujjuaq ? Est-ce
qu’on donne les traitements intraveineux ? Est-ce qu’on fait des rayons-X ? Est-ce qu’on
donne juste des pilules par la bouche ?
Participants explained that each of these questions described by a physician were themselves
loaded with more questions: If a patient stays in Montreal, who will be the escort? What work
and family responsibilities was each leaving behind? What are the side effects of intravenous
treatments? How and where are they
administered? Patients and
physicians were often communicating
this information through interpreters,
information, which could often be
emotionally loaded for patients and
family members,.
1. Communication regarding
EOL care options
It could be difficult for physicians to
explain to families that the most
heroic life-saving efforts are not
necessarily the best option for the patient. As one participant stated, patient impressions of
health care may have been rooted in television shows in which dramatic efforts led to miraculous
results.
“We see a lot of stuff on TV that you know we can fix anything today, right?... And so (from
the parent’s perspective) we put a child on a plane so that he can get here to get that help.
And now, after all of this…what went wrong with that? And so usually in those cases when
they get here, what we’re doing is we’re waiting for them to be here so that they can give
us permission to allow the patient to die.”
A physician described a conversation with a family whose response to whether to hospitalize
their grandfather was, “of course we want him to live.” The physicians found it difficult to
communicate what he felt was going to happen: “I think he’s going to die anyway and he’ll
suffer for 20 days in the ICU (intensive care unit) and then he’ll die. Or he’ll die here (at home)
in dignity surrounded by family.” The physician was concerned that the directness of this
message would be misunderstood or experienced as aggressive.
One physician explained that accepting that nothing more can be done can be difficult for
families, and resistance to this can actually result in patients dying in the South. The physician
elaborated:
We have to try to decide; is it worthwhile to go through the usual procedures and keep
the patient in Montreal for long periods of time or should we just say that the quality
It’s understandable that people
have a hard time recognizing that
a reasonable choice is not being
treated for something for which
there exists a treatment. It’s just
the treatment might be worse
than the disease. (Physician)

54
of life, if not maybe length of life, might actually be better if we didn’t do any of this
(chemotherapy or radiation) and let them go back up North?…. It’s hard to convince
patients before they have the twelfth CT scan that yeah clinically speaking your
disease is progressing, we don’t need another x-ray to say that your disease is
progressing …and you’ve already had four lines of chemotherapy. So the place to be
is at home and the focus of care should be staying at home and being as comfortable
as you can be at home, rather than going back down South, waiting in the transit
(MNQ), being hospitalized, seeing umpteenth physicians that you haven’t seen before,
falling between the cracks and ending up with a strong possibility of dying down
South.
Inuit and Qallunaat alike described
how focus on the present moment
rather than the future have previously
contributed to lack of EOL care
planning for Nunavik patients and
families. This tendency was identified
as being rooted in historical practices
in which the life and survival of
families revolved around the hunting,
gathering, and food preparation of the
day. As one Inuk participant
explained, care went into planning for the next season, but thinking further ahead was
not perceived as useful in a nomadic culture. Physicians described that was at times
interpreted as resistance or apathy toward advanced care planning or EOL dialogues.
As noted by one health care professional, “Habituellement la discussion de fin de vie se
fait surtout quand ça commence à aller mal parce quand c’est trop longtemps d’avance
les gens ne voient pas le besoin.”
However, community members also
described how families prepared for and
accepted the emotional and physical
realities of dying and how this was
made easier if a patient accepted that
the end of their life was near. A
community member found that when
this acceptance is present, families
“have been very openly candid about
what is physically happening to their
loved one as that loved one lives his/her
last days.” In these instances, she
described a grieving process that can
begin while the family member is still
alive.
How do we deal with the
psychosocial part of their
(patient’s) feelings is
something that we are not
necessarily trained as
nurses. They say that we can
have different hats. But in
reality, that does not mean
that you are comfortable
with all of those hats.
(Nurse)
People are not happy about
the services, and they kind of
want to vent and try to put
down your professional
qualities or competency.
(Nurse)

55
2. Communication and patient mistrust
Patient mistrust could impact communication between nurse or physician and patient or
family in community and Montreal settings. A nurse told us about a patient who, rather
than speaking to her directly, went public (on the radio and Facebook) to vent
frustration about the services that she felt she as nurse was doing her best to provide.
Another nurse described a family’s mistrust of her concerning a patient in critical
condition with respiratory problems. The family had come to the hospital to visit on
several occasions and there was a high likelihood that the patient would die. The
patient was in pain and morphine was recommended. The family did not trust
treatment recommendations. From the nurse’s perspective, this lack of trust and ability
to address this had consequences for the patient: “The family refused the morphine.
Some accused the hospital of fucking with her. We put the oxygen mask on. The family
did not want this. Some felt like we did not care…I saw that person die. In the end, it
was horrible… She could have died much more peacefully.” This accusation by family
members of nurses not caring was not an uncommon experience for the nurses with
whom we spoke.
3. Communication and unresolved grief
Nurses were on the frontlines in supporting patients and families in EOL care provision. As
such, they were recipients of unresolved emotional suffering that may be triggered by the dying
families. An Inuk community member described that when a family has experienced suicide or
another kind of violent death, “they have more bitterness and uneasiness with themselves…this
can be toxic.” This “toxicity” could come out in anger expressed against health care providers.
In one instance, a nurse had been sent to a community to accompany a family and
patient at end of life. The nurses in the CLSC were already occupied with their regular
patients and urgent cases. This newcomer nurse became a verbal target of family
hostility when their grief transformed in anger. As she had no relationship with the
family and had not had the training to
address family reactions, she herself was
left feeling threatened and fearful and
uncertain as to how to respond. Eventually,
a community leader was asked to intervene
and the situation became regulated. As her
colleague reflected on what happened she
concluded the following:
Les gens autour avec leur tristesse
qui s’est transformée en rage… faut
toujours trouver un coupable quelque
part dans ce temps là quand on a de
la peine.” In thinking of how to
prevent this from happening again,
she remarked, “ Peut-être ça va
mieux, une équipe plus solide pour
essayer de dire ‘bon là vous êtes
It must be kept in mind that
expressing in Inuktitut is
really not the same as
expressing in English and
that it can happen that one
concept requiring 10
sentences to explain in
English can also be
accomplished in Inuktitut by
using just 2 sentences.
(Interpreter)

56
fâchés; vous avez de la peine. On comprend mais c’est la dame qui a demandé
d’être ici nous on n’a pas forcé rien c’était son désir de voir sa communauté une
dernière fois.
4. Nurse isolation and fatigue
Nurses working in a community did not always have a strong collegial relationship with each
other. Further, they may not have remained in a community long enough to feel at home there.
In an unfamiliar culture and in a challenging work environment, nurses stated that fatigue and
isolation could result in a lower degree of patience or empathy for patients and families. One
nurse pointed out that their stress as nurses was even greater when they were carrying the
additional workload of fellow employees who did not arrive for work that day.
5. Uncertainty about interpreters
Another difficulty in physician- patient communication concerns interpretation services. This in
part was due to lack of understanding about linguistic differences between languages and lack of
clarity concerning a specific interpreter’s approach to patients. A physician put it this way:
I was invariably relying on translators. Even with our best translators, particularly in that
context of death and dying, I was always very leery to what was actually being said…
When you are telling the truth (about a terminal prognosis) through someone else, the way
the truth is told is different.
6. Knowledge of patient, family and community
The more knowledgeable one was of family and community, the more accurately they could
evaluate and support a family’s EOL care potential. A nurse provided the following illustration
of the difference in home care planning when a nurse knew the families in a community:
This whole concept of quality of care, it’s all about your relationship. I was
talking to two nurses who remarked,
“We’ve never been here before we don’t
really know the population; we’ve just
arrived and umm, we’ll look into it.” So
they don’t know. As opposed to the nurse
in (another) community who said “oh
yeah I know this family, he’s got three
sons, but he’s actually living with his
grandson. I’m going to go to the house
and see what the reality is in terms of
where he’s going back to and if I can
actually make this happen (palliative
home care) for this guy or not.” She
knows the patient, she knows the family
and she knows that she’s looking for the reality.
Notably, most nurses and physicians in Northern communities had never visited the
homes of the patients that they saw. Though due to the relationships they have with
It takes longer time to
explain to patients, to, and
to make sure that they
really understand … to
make sure that they have
given consent; and that it’s
a “consentement libre et
éclairé..” (Nurse)

57
interpreters, they may have come to know about a family’s relational and physical
environment.
9.3.2!Communication!strategies!of!physicians!and!nurse!with!patients!and!families!
Physicians and nurses offered several strategies that they had drawn upon to improve
communication with Nunavimmiut patients and families. We have listed them here.
1. Time, time, take time
Throughout our dialogues with nurses and physicians, the notion of “time” continued to surface.
EOL conversations could not be hurried. Nurses and physicians routinely described taking up to
two hours to meet with patients and family members and described how this time taken served to
empower the family.
2. Keep sentences short
Interpreters indicate that the shorter the phrases they are
given, the more able they are to communicate all of the
information clearly to the patient.
3. Explain why
Some health care workers suggested that one way to address
potential mistrust with patients and families is to explain
why questions are being asked. This may avoid the patient
feeling intruded upon.
4. Use visual illustrations
Several Qallunaat and Inuit practitioners commented on the fact that the use of visual
illustrations was most effective in communication about the body, disease and medical
procedures.
5. Shift the power dynamic when possible
Some Qallunaat were conscious about what they saw as colonial practices and sought to
acknowledge Inuit expertise in their interactions with patients and families about health. One
nurse did this by inviting interpreters and families to share of their anatomical knowledge as
Inuit hunters, another by making a point to validate the care that family members were already
providing. One participant spoke of her personal journey as a Qallunaat, one in which she
shifted from identifying with her assigned position of authority to that of engaging with family
and community. She felt the insights gained in doing so had been invaluable.
6. Welcome patient request for interpreters
In some cases, an interpreter is desired for both language
interpretation as well as to serve as cultural mediators
and given emotional support.
7. Model through example
As Inuit have historically learned through observation
and as didactic teaching can feel patronizing, many
The first thing you
need to treat is to
treat the person
spiritually and
mentally instead of
with the Tylenol.
(Nurse)
I realized early on
in my career that I
was not the boss
of anything.
(Social worker)

58
health care providers spoke of mentoring caregiving techniques with patients or families.
8. Invite family
A nurse related how she approached palliative care by prioritizing relationship building with
families in the home. It could be intimidating to nurses to have family members in a room when
providing treatment to patients and to step into the cultural world of the patient. Nevertheless,
nurses perceived that it was meaningful for family members to be invited into direct caregiving,
feeling that the patient, even if not completely conscious, sensed the family’s presence.
9. Explain difficult news to the interpreter ahead of time
Some physicians empathized with how difficult it can be for an interpreter to communicate news
that they may personally be affected by to patients. Giving some time to the interpreter to
process what would be communicated ahead of time would potentially allow interpreters to tend
to their own emotional reactions and thereby communicate more clearly to the patient.
10. Explain the rationale of statement to interpreter
When communicating something that could be received as painful or controversial, physicians
and nurses found it helpful to explain the reason for their words to the interpreter. This allowed
the interpreter to communicate the intent or spirit of the message, which was key to reaching a
mutual understanding.
11. Use a telephone
Using a telephone to provide interpretation services was at times necessary. When no interpreter
was available in person , it was suggested that Qallunaat keep dialogues short and have several
meetings, if possible, rather than one extended discussion.
12. Let patients know that even doctors cannot know the time of death
Some physicians, recognizing the worldviews of the population with whom they worked, chose
to contextualize their messages concerning terminal illness with the words that even doctors
cannot accurately predict when patients would die. This appeared to address some of the
misgivings of family members or patients when doctors spoke too confidently.
13. Look at the patient, not the interpreter when speaking
A natural tendency is to speak to the person who understands what is being communicated
verbally, the interpreter. Nonetheless, the patient and family are receiving many non-verbal
forms of communication which affect the development of trust with the physician or nurse.
Thus, addressing the interpreter verbally while looking at the patient and family members is most
effective in communication.
14. Invite input from interpreters
Interpreters discussed that it may be useful to have a feedback loop where they could teach
physicians and nurses about how to communicate difficult messages, about cultural knowledge
and offer guidance concerning community contextual factors.
15. Be clear concerning the potential impact of extraordinary life-sustaining treatment

59
Several physicians emphasized the importance of explicitly delineating what “heroic measures”
could actually look like, such as that of cutting into a person’s chest to revive a patient. They
also recommended being clear about the potential consequences of these measures on long-term
physical health and emotional wellbeing.
16. Let go and let it be
Southern health care providers noted that it was not always the patient who was having difficulty
letting go; sometimes the physicians had difficulty accepting that more treatment was not serving
the patient and family. This acceptance ran counter to their perceived mandate of saving lives
and was therefore difficult to accept.
17. Recheck comprehension
Several physicians described a feedback system in which they asked questions to their patients at
the end of family discussions to verify what the patient had heard and understood. They found it
useful to be as specific and concrete as possible.
18. Learn some words in Inuktitut
Many nurses and physicians described using some words
in Inuktitut with patients, such as basic greetings. They
felt this sent a humanizing message to patients.
19. Attend funerals when appropriate
Until now, funeral attendance has been open to the entire
community. Attendance has been recognized as a gesture of support that has served to build
relationships of trust in the community.
20. Speak up about aggression
Some nurses found it helpful to assert their
own expectation of being respected in the
face of aggression. Health administrators
have asked mayors and municipal
governments to intervene when patient or
community member choices had a
detrimental impact on nurse’s ability to
provide care.
21. Training regarding accompaniment of
Nunavimmiut
Training needs are best explained in the
words of a physician: “Je pense que toute la
partie soins de base médicale, le laboratoire,
le contrôle de la douleur, donner des
médicaments ça c’est fait correct mais tout
l’accompagnement pis s’asseoir pis comment
tu te sens, comment tu vis ça, pis y-a-t-il des
choses qu’on peut améliorer. Ça c’est un
Compared to other
professionals around them
who are getting regular
professional support,
interpreters don’t receive
regular training or have the
structure to
professionalize.
No one has wanted to step
forward to advocate for
this. (Interpreter)
Là, vous êtes fâchés;
vous avez de la peine.
On comprend mais…
(Nurse)

60
gros zéro,”
Developing psychosocial support for families could serve to enhance the communication process
concerning EOL care as emotional barriers to communication will be addressed.
22. Educate communities about medical procedures through public health announcements
Participants suggested that education concerning EOL care could be done through Facebook,
Taqramiut Nipingat Radio (broadcasting in all 14 communities), or through video or brochures
(emphasizing illustrations) in health centers.
10. THE UNIQUE ROLE OF INTERPRETERS IN COMMUNITY CONTEXTS
Interpreters played a unique role in EOL care conversations among patients, families, nurses and
physicians. As interpreters shared their experiences, it became apparent that the pressures they
experience and challenges they face were significant. In light of this, interpreters were
unanimous in stating that regular training and support was needed to fulfill their responsibilities.
Cultural and historic considerations for interpreters
Participants described how in Inuit tradition and history, certain positions were reserved for those
who had either attained a certain level of status or had experience in clans or communities.
Historically, certain individuals were assigned the role of the messenger (Tutsalukkaijiit). Their
role was to communicate the painful news of death or loss to the families when someone had
died. People assigned this task had a degree of life experience and were often respected in the
community.
Likewise traditional health care workers, those who tended to birth, death, or illness in
communities, were persons, usually women, who had been mentored by the previous generation.
Their ability to respond to the complex physical and emotional needs of families depended on
what they had learned through observing and assisting the more knowledgeable mentor.
Interpreters were located at a unique juncture between historical and contemporary models of
care. Often interpreters were hired because they spoke the language, not because they knew how
to interpret. No prerequisite training was required or offered. As they acquired the competency
to address the challenges of their job, they
relied on others who had experience
interpreting. Interpreters were working in a
health context where roles were divided
according to supervisor expectations, and
where professional recognition was weighed
by formal education rather than work
experience.
In Nunavik’s inpatient centers (e.g., hospitals
and the elder’s home), the interpreters were
the PAB’s (préposés aux bénéficiaires) whose
tasks include cleaning, sterilizing, and the
I have to defend the nurse,
defend the client. Sometimes
were are in the middle, its
hard…The patient has to
respect the nurse, the nurse
has to respect the patient,
the interpreter has to respect
both. (Interpreter)

61
feeding and washing of patients. As they were bilingual, these PAB’s were also given the task of
interpretation. In the community CLSCs, interpreters were hired in the larger context of their role
as Northern Attendants. They performed a variety of tasks that included patient intakes and vital
signs, sterilization of equipment, cleaning, responding to phone calls, setting up appointments,
and charting. Notably, the Northern Attendants identified themselves as interpreters, not as
Northern Attendants, perhaps indicating the weight that they placed on this aspect of their
position. Though some Northern Attendants we spoke with had been provided sporadic
interpreter training throughout the years, they were unanimous in stating that linguistic resources
and training in communication skills were critical to their ability to fulfill their role adequately.
10.1 Challenges in interpretation
The interpreters with whom we spoke
described two major challenges: a) feeling
caught between patient wishes and
physicians and nurses expectations; and b)
communicating bad news to patients and
families, especially if it was about people
they knew personally.
10.1.1!Conflicts!!
Interpreters were in the unique position of representing patient to physician and nurse and
physician and nurse back to patient. This could be a depersonalizing experience if they felt they
themselves were not being recognized as individuals with their own emotions, ideas and
opinions. Interpreters described their perceptions of being disrespected as persons in four
specific contexts: a) when asked to perform tasks for which they had not been adequately
prepared; b) when pressured to accomplish more than they had time to do, including moving too
quickly from one emotionally loaded conversation to another; c) when they were the recipient of
nurse/physician frustration, for example, interpreters felt blamed at times when patients did not
arrive for appointments; and d) when patients took frustrations out on them. At times, this
frustration was directed toward them as interpreters; other times this was directed toward a
physician or nurse. In the latter case, the interpreter felt pressured by the patient to align with the
patient. Interpreters also spoke of their struggle to decide how much of these emotional reactions
to translate between parties.
10.1.2!Close!relations!and!bad!news!
When a medical prognosis was poor, interpreting
for family members, friends or colleagues became
a difficult experience. Because of their linguistic
abilities, it was not unusual for the interpreters to
be requested to be the hospital escort and
interpreter for family members or friends. For
routine medical procedures, this was not
We know people from here. I
felt heartbroken. I almost
cried. (Interpreter re:
translating difficult news)
When I don’t understand
the body parts, its kind
of hard for me… the big
words they have.
(Interpreter)

62
problematic. However, when asked to communicate a terminal prognosis, the interpreters could
experience their own personal grief reactions. With family members, interpreters described
wondering how much to disclose to the patient about their diagnosis. This decision appeared to
be based on what they were able and ready to accept themselves and on selecting the information
that they felt would communicate the most hope to the patient.
10.1.3!Linguistic!challenges!
The most common language used between interpreter and physician and nurse is English.
However, the first language for interpreters is Inuktitut and for most nurses and physicians,
French. This posed a unique set of challenges for discussions about EOL care. Explaining a
disease trajectory or a discussion of EOL care choices filled with complexity and subtle nuances
are difficult to communicate under any circumstances, more so when attempting to do so in a
second language.
There was no uniformity among Nunavik communities in terms of linguistic resources available
to interpreters. Some communities had English-French dictionaries, some had USB keys with
access to diagrams and terminology, and some had basic books with diagrams labelled in English
or French while others had a three-dimensional model of the body to bring into the consultation
room. Though several interpreters had identified that visual illustrations were more effective for
communication of information than through written texts alone, there was no visual glossary or
text which illustrated anatomy or common disease trajectories in all languages (French, English
and the Hudson coast and Ungava coast Inuktitut dialects). Furthermore, not all interpreters
were literate in all languages.
Many interpreters described having learned anatomy from school and from hunting. This served
them well. A physician remarked on the extent of this knowledge in the Inuit community in
which she was located; “J’ai constaté que les Inuit en general ont une excellente comprehension
de leur anatomie. Ils font souvent référence à l’anatomie des animaux qu’ils chassent et
semblent avoir développés une compréhension assez juste de leur corps.” In speaking of the
interpreters she continued, “ Ils semblent avoir un 6e sens pour savoir quand quelqu’un ne va
pas bien. De nombreuses fois ce sont les interprètes qui ont identifié la maladie avant que moi,
comme médecin, j’en fasse le diagnostic.” Even with this extensive knowledge, the interpreters
were consistent in identifying their need for more translation materials concerning complex
procedures and nuanced dialogues. They described how significant errors could be made
without this.
10.1.4!Confidentiality! !
One challenge that interpreters face is
they often know the patients on a
personal level, whether as family
members, friends or community
acquaintances. Cultural communication
norms in communities often included
sharing information about one’s health
I thought I was going to be ok
but when we entered the house
I got very sensitive so I was
having a hard time to translate.
(Interpreter)

63
with each other. Patients and family members may have gone on the radio to share their illness.
Consequently some interpreters described how professional expectations concerning patient
confidentiality were contrary to community norms in communication.
Further, some had difficulty with confidentiality because of the emotional challenges they faced
when translating conversations such as news of an accident or suicide, a terminal prognosis, or a
family discussion concerning palliative care options. In these moments, they received the direct
and raw reaction of the patients and families which they then had to translate to the physicians
and nurses. Interpreters described how this created a need to speak with someone as a way of
coping, an option that they did not always have without breaking someone’s confidentiality. As
one interpreter remarked:
It can be a very lonely experience for some interpreters in Nunavik. Sometimes they end
up ostracized by people who let their emotions take over and lash out at the nearest and
easiest target, the interpreter. Fortunately, there is more awareness of the importance of
remembering that the interpreter is only filling the vital role for communications of these
grave situations in EOL care.
10.1.5!Staff!turnover!!
There is a high turnover of nurses and physicians in Nunavik communities. A long-term
relationship between interpreter and nurse/physician was regarded by all as a precious
commodity, one that contributed to job satisfaction on both sides. These teams appeared to have
developed a mutual trust that came with time, knowledge of each other’s strengths and
weaknesses, and an ability to adjust accordingly. On the other hand, newly formed teams were
more likely to experience misunderstandings and the consequences of this. One example
provided by an interpreter was that of a newly arrived homecare nurse who came to assist the
local PLA nurse with a palliative care patient. This new nurse insisted that the PLA interpreter
accompany her on the home visit instead of letting the interpreter leave work to support a family
attending a patient’s death.
10.1.6!Reliability!of!colleagues!
Interpreters were also impacted by the reliability,
trust and the continuity that they experienced with
their own colleagues. As interpreters live in small
communities, personal conflicts outside of work
affected the interpreters job and vice versa. Some
interpreters had significant incidences of
absenteeism, leaving those who were remaining to
assume extra responsibilities. One interpreter called
these days with lack of personnel as, “we are going crazy over here days.”
10.2 Strategies used by interpreters to address job stress
On a personal level, interpreters drew on several strategies to address job-related stressors. For
many, their religious faith served as a source of strength. Others took time to continue with land-
We have feelings too.
We are not robots!”
Sometimes we want to
say that… One day we
will. (Interpreters)

64
based traditions such as making time for hunting, berry picking, camping and fishing. Others
spoke of relying on nurses and fellow interpreters to speak to when they were stressed.
Regarding linguistic and communication challenges, the interpreters with whom we spoke
described a variety of strategies. As the examples below illustrate, some followed their own
intuitive leanings in decisions concerning patient communication.
10.2.1!Strategies!re:!EOL!communication!
As mentioned, interpreters were breaching cultural and religious norms when requested to
communicate a terminal prognosis to a patient and family. Though interpreters differed widely
on how to respond, some explained their conflict by the following: a) only designated/respected
persons in a community transmit news related to death; b) it is ok to not speak directly of death
even if this information is known, trusting that the patient will sense when it is their time to pass
on; and c) only God knows when it is time to go; humans cannot predict this.
Interpreters struggled to address the incongruence between community norms of communication
and the physician who asked them to translate something like, “so and so has 3-6 months to
live.” Interpreters described choosing different strategies to address this incongruence depending
on the following factors: a) their personal relationship with the patient/family or physician and
nurse; b) their level of confidence and/or experience; c) what they imagined themselves wanting
in the patient’s place; d) the maturity of the family; e) the location of the patient on their illness
trajectory; and f) a patient or family’s stated preference. Some patients preferred a direct
message; others preferred to not know their terminal prognosis.
Interpreters adapted one or a combination of the following roles
1. Literal translator:
Some interpreters adopted a strategy
of separating personal life from
professional role. These interpreters
considered themselves more as
translators and less as cultural
brokers. They saw their role as
neutral, one in which they
communicated every word and
response as close to their
understanding of what the physician and nurse and patient/family had expressed. One interpreter
gave the following example of what she said in providing a literal translation of a doctor’s
prognosis:
They asked me to tell you; it’s going to be hard to tell you, the doctors don’t know
everything…. He doesn’t even know the date that you will be dying; he asked me to tell you
that even in three months and before that you might pass away… he knows very well with
the body parts, he found something, a cancer.
2. Mediator and advocate
We will make you more comfortable
so that you will not suffer… the
doctors are trying to help.
(Interpreter)

65
Other interpreters saw their role as one of mediator and advocate. Recognizing that cultural
differences existed between the doctors/nurses from the South and the Inuit patients whose voice
they represented, they mediated between the two. They attempted to reassure patients regarding
the intentions of physicians.
This group was more likely to advocate for patients, asking questions that they thought patients
were afraid to ask and seeking clarification when they were not sure if the patient fully
understood what was being communicated. They were more likely to make decisions concerning
the parts of a dialogue that they perceived to be beneficial and which they considered as harmful
and made interpretation choices accordingly. For example, one interpreter emphasized that she
always asked patients returning from the South, “Were you explained as to what your sickness
is? Do you know what the diagnosis is? Do you know what the medication is for?” If they were
uncertain, she would track down this information. She added that she would never interpret that
there is no cure as “only God knows this.” However, if it was clear by their symptoms they were
going to die, she explained to patients: “We will make you more comfortable so that you will not
suffer… the doctors are trying to help… you can lengthen the time, you can still have a liveable
functional life even though you are given that time.”
Several interpreters chose to not communicate
the duration of time remaining that a physician
had given a patient, concerned that this would
harm the patient who would lose the will to live
and die sooner than necessary. One interpreter
had been mentored to never interpret a message
word for word and did not use the “cancer” word
as she believed people see a coffin when they
heard this word. In its place, she said things like,
“they have found something….you will live…
you’re going to have to be sent down for further tests and that there is treatment to be done….
even though they say you have three months to live, they are going by what they know, but they
can always be wrong.” She explained “We never say its bad. I just say, ‘its life like this.’”
It should be noted that these choices to not directly communicate cancer or a terminal diagnosis
were contextualized in the belief that internally, Inuit know when they are ill, when that illness
becomes terminal, and that they will
come to accept their impending death
when they are ready. They did not need
to be told.
3. Cultural broker
Interpreters also functioned as cultural
brokers, at times explaining the medical
culture of the doctors and nurses to patients, and at times representing the Inuit cultural
perspective to doctors and nurses. One interpreter described how she would encourage her
patients to trust the physicians while simultaneously toning down the directness of their message.
She explained:
I have to add some words that
even they (doctors) didn’t say.
(Interpreter)
Even though they say you
have three months to
live, they are going by
what they know, but they
can always be wrong.
(Interpreter)

66
At first I always try to say, ‘The doctors,
they know everything. They know very
well with the body.’ It’s hard to say it; I
have to add some words that even they
didn’t say. I have to add sometimes, not
to let them (patient) gets shocked, cause
the way they (doctors) are just saying it
(terminal diagnosis). Us, we are
different...For Inuit people, we are more
calm.
The interpreter went on to explain how she would explain a terminal diagnosis more tentatively
adding the word ‘maybe.’ This manner of communication is congruent with how several
interpreters spoke during the interview for this report, making statements with inflections at the
end as though it were a question, stating ‘maybe’ before responding to something that they were
actually definitive about.
Another participant described how many interpreters are afraid to say something to physicians
when they disagree with a manner in which a message is being communicated. She herself had
sat down with physicians and nurses who were speaking about cancer and EOL and told them,
“When you ask me to interpret for you, don’t say this in such a way, because right now some
people, they know enough English to understand.” She then explained why, “I’m telling the
doctors because it’s to protect not just me but the patient… Because when you know the people,
you know how they can take good news and bad news, or their will to live. You kind of have that
idea of how people are when you live with them.”
She emphasized to physicians that in the first meeting with the patient, it was especially
important to not use the word cancer.
4. Avoidance
In cases in which interpreters were dealing with the imminent death of close friends and family
members, some spoke openly of adapting a strategy of avoiding the dialogue about the terminal
diagnosis. In one instance this occurred even when the interpreter was asked by the patient to
communicate the exact message of the physician.
10.2.2!Linguistic!strategies!
When confronted with terms, expressions, or
procedures that they were unfamiliar with, the
capacity of an interpreter to seek outside
resources depended first on their awareness that
they did not understand what had been
communicated and secondly on their capacity to
ask for or seek clarification and assistance. They
…because when you know
the people, you know how
they can take good news
and bad news, or their will
to live. (Interpreter)
We are a forgotten
breed. We’re always
needed but do not have
the resources to do our
job. (Interpreter)

67
described diverse strategies in dealing with their predicament such as: a) asking the
nurse/physician for clarification; b) waiting to interpret until being certain that everything that
was stated is understood; c) consulting with former and current interpreters; d) asking their own
parents for translation of terms; e) calling community physicians by phone for advice; and f)
drawing illustrations to portray what they could not explain through words.
10.3 Training needs
A few northern interpreters had received training in areas such as administration, medical
procedures and anatomy, time management, communication and active listening. However,
these trainings appeared to have been few and far between when they had occurred.
10.3.1!Linguistic!
Interpreters were unanimous in describing that they felt inadequately trained to fulfill their
responsibilities, asking for resources and regular training in translation concerning anatomy and
medical procedures. In terms of anatomy and medical procedures, interpreters indicated that it
would be useful to have visual resources, some asking for a book with drawings not unlike, “The
Terminology on Human Anatomy,” a document emerging from collaboration between Nunavut’s
departments of Culture and Heritage and Department of Health. This book would have to be
translated for both the Hudson and Ungava coast dialects. Some preferred a three-dimensional
model of the body with removable parts as this allowed them to explain procedures and the
interrelation between body systems more easily. One interpreter described how helpful it was
for her to compare illustrations of what an organ had looked like when it was diseased versus
when it was healthy. She requested that physicians provide these explanations and images so
that she can more clearly communicate the message from physician to patient.
10.3.2!Communication!
Interpreters also requested training in areas of communication. Communication regarding
diagnosis and prognosis, treatment options, and EOL care decisions were emotionally loaded for
all parties. As a bridge between patient/family and physician and nurse, they were not always
certain of how to best represent the other.
1. Addressing emotional responses of
patients and families
As with nurses, the interpreters spoke of
finding themselves needing to respond to
the emotional reactions of clients and
families. They were often the only ones
present to process emotionally loaded
conversations. Interpreters would receive
the grief, denial or anger reactions of
patients and family members and often felt
obligated to respond in a humane and
compassionate though firm manner. It was
not unusual for patients or families to say
The patients always complain
to us, and the doctors and
nurses, they complain to us
too. We are all in the middle.
And we can’t say anything.
“Stop complaining!” We can’t
say that because we are
working. (Interpreter)

68
things to interpreters that they did not want translated but rather, to have their sentiments
affirmed by the interpreter. Interpreters had no training in how to respond to these emotions or
reactions, however, and several with whom we spoke felt this lack of training significantly.
Their difficulties in knowing how to respond were heightened by the fact that many themselves
had their own unresolved histories of suffering and residual emotional areas of pain that were
triggered in their work.
2. Dual roles and addressing conflict
When interpreters described feeling caught in the conflicts between nurses or physicians and
patients or families they sometimes used hand gestures to portray the image of feeling pulled or
torn between loyalties to community and to colleagues. Several interpreters asked for training in
knowing how to respond to this conflict loaded communication. On the one hand, the
interpreters were part of the community whom they were representing. From what they
described, it was not unusual for patients to assume that they would share the same feelings of
anger or indignation when this was felt toward nurses or physicians. One nurse provided further
insight into this dilemma describing how patients and families are not sworn to the same
confidentiality rules as the interpreters. This places interpreters in community contexts in a
vulnerable position as they are not permitted to defend themselves should they be the target of
criticism for not taking sides in a conflict.
On the other hand, interpreters described having experienced nurses and physicians as human
beings with their own emotions and needs, not only as health care providers performing a task.
This perspective had deepened the awareness of interpreters, making it difficult to know how to
respond when patient statements reflected hostility and misunderstanding of their colleagues
from the South. Likewise, interpreters felt caught if critical statements were directed from
physicians or nurses toward community members, usually in the absence of a patient.
3. Knowing how to decide what to say and what not to say
Interpreters stated it would be “very helpful” to have training in knowing how to proceed when
their values contradicted that of the
physician or nurse. Presently, when
caught in these value tensions they drew
on the advice of others in the community,
medical profession or their own
intuitions. As they explained their
choice, it was clear that they were
engaging in a logical decision-making
process. Older interpreters felt confident
in their choices regarding communication
when value conflicts were present;
younger interpreters expressed more uncertainty in their decision-making process. However,
when asked if it would be helpful to have a decision-making model through which to make these
ethical decisions, interpreters with diverse levels of experience responded affirmatively.
11. CONSIDERATIONS CONCERNING BILL 52/LAW 2
When I tried interpreting for
the sick one; “You “Why did you
tell him, why did you tell him he’s
dying soon, why did you have to
say that?” This gave me a shock.
(Interpreter)

69
No one with whom we spoke in the Inuit communities was familiar with Quebec’s Bill 52 passed
in June 2014, nor Law 2 which was to be implement in November of 2015.2 During the course
of this study, in February 2015,, the Supreme Court of Canada ruled in Carter vs. Canada to
decriminalize physician-assisted dying. However, neither the Inuit newspaper nor the Nunatsiaq
Newsreported on the federal decision or provincial debates. While Nunavik participants we
spoke with had heard media networks such as the CBC refer to “doctor-assisted suicide,” and
community members mentioned seeing television documentaries from other countries
concerning “euthanasia” and “assisted suicide,” none drew on local issues as a point of reference
for our conversation. Physicians and nurses in the North were not engaged in a dialogue
concerning the application of this eventual provincial law into Northern communities and
seemed to be considering this for the first time in the course of our interviews. In contrast, health
care providers in the South with whom we spoke had been engaged in dialogue and debate
concerning Bill 52 for several months. The following discussion will shed some light on the
complexities that need to be addressed when implementing Law 2 in Nunavik communities.
11.1 Contextual factors for Bill 52/Law 2 in Nunavik
As indicated in the introduction, the passage of Law 2 in Quebec has unique implications for
Nunavik, this due to its unique spiritual, historical, cultural and social context. Spiritually, most
Inuit in Nunavik have an affiliation with the Anglican Church. Many believe that, just as God
gives life, it is only God who knows when life will come to an end. Any interference in the
process of dying or attempting to predict when someone will die can be perceived as human
intrusion into the divine realm. Community members stated that previously, church leaders were
strong in their condemnation of those who committed suicide. Burial and mourning practices
were altered to erase the memory of the person who took their life with burials taking place as
soon as possible and the usual three-day period for mourning circumvented. Even conversations
about this person were considered taboo in certain
communities. One participant stated that her
church had buried those who had committed
suicide in a vertical position in the ground rather
than horizontally. Over the past 20 years, the
church has taken a more compassionate approach,
recognizing the suffering of families that have lost
members to suicide and welcoming traditional
mourning practices.
A 2015 Health Canada report states that the Inuit
youth in Canada have the highest rates of suicide
in the country (11 times the national average) and are among the highest rates in the world.
Suicide is a serious concern for families and communities in Nunavik, at personal, social,
political and cultural levels. Though Quebec has chosen language in Law 2 that does not mention
“assisted suicide” or “euthanasia,” these are terms used in popular discourse in Nunavik, this
based on debates and documentaries in mainstream television. Consequently, discussion about
2 On December 1, 2015 – nine days before Law 2 was to take effect - the Quebec Superior Court ruled that Law 2 is
incompatible with the federal Criminal Code. The Supreme Court of Canada has given the federal government until
Feb 2016 to amend the Criminal Code to allow for assisted-suicide.
In many instances I would
find it a terrifying prospect
to have that conversation,
feeling so unsure about the
quality of communication.
(Physician)

70
palliative sedation and medical aid in dying – the terms used in Law 2 - raise associations to
“suicide” in many people’s minds. The strong and at times overwhelming emotional reaction
makes it impossible for some to discuss medical aid in dying in any form.
A few Inuit community members spoke of hearing stories of elderly or ill family members that
had either been left behind by their families when they weakened or who chose to remain behind
when they could no longer keep moving and the family needed to continue walking for its own
survival purposes. These participants indicated, however, that this had never been widely
practiced. Most participants spoke of traditions in which the elders and infirm were cared for by
families and communities with stories of voluntary or involuntary abandonment something that a
few of our participants had heard spoken about by parents or grandparents but appeared to be a
taboo practice. Inuit cultural values emphasize mutual care of the weak and infirm in family
community contexts and several participants described examples of families that went to great
lengths to provide this.
11.2 Views on palliative sedation and medical aid in dying
Bill 52 was accepted in June 2014 by the Quebec National Assembly as “An act respecting end
of life care.” A year later, Bill 52 became Law 2. The Act provides the following definitions
which were drawn on to guide this inquiry:
Palliative care is defined in the act as “the total and active care delivered by an interdisciplinary
team to patients suffering from a disease with reserved prognosis, in order to relieve their
suffering, without delaying or hastening death, maintain the best quality of life possible and
provide them and their close relations the support that they need.”
Continuous palliative sedation refers to care that is offered as part of palliative care and consists
in administering medications or substances to a patient at end of life to relieve their suffering by
rendering them unconscious without interruption until death ensues.
Medical aid in dying refers to care consisting in the administering by a physician of medications
or substances to a patient at end of life, at the patient’s request, in order to relieve their suffering
by hastening death.
It should be noted that the law also includes its
own definition of “EOL care” by which it refers
only to medical aid in dying or palliative care.
For the purposes of our study, we have defined
end-of life-care much more broadly to include all
care provided to persons at the end of their lives.
11.2.1!Medical!community!perspectives!on!the!implementation!of!Law!2!
The questions that we asked both Inuit and Qallunaat participants were based on Bill 52, the
jurisdiction of which was the entire province of Quebec (not only Nunavik). Specifically, we
asked participants about whether someone would receive medical aid in dying if the following
conditions (as per the Bill) were met: a) They were 18 years or over, and capable of giving
consent to care; b) suffered from an advanced state of irreversible decline in capability; and c)
suffered from constant and unbearable physical or psychological pain which could not be
There is a slippery slope
of Bill 52 as a way of
saving the government
money. (Physician)

71
relieved in a manner the person deemed tolerable. We also asked families about their
experiences of nurses and physicians administering medication to patients at the end of life and
what their understanding of this had been.
Physicians and nurses with varying levels of experience in Nunavik expressed serious concerns
about broaching a discussion of medical aid in dying or palliative sedation with patients and
families with whom they worked. They were unanimous in their belief that the religious
orientation of the Inuit would prevent patients from ever requesting either option. As one nurse
emphasized when asked if patients ever ask for aid in dying in the North, “People are very pro-
life, very pro-life, very very very pro-life.” Reflecting on this, one participant countered this
perception concerning a pro-life stance that it was a common mistake made by nurses and
doctors. While pro-life refers to a religious attitude concerning a specific debate in society (i.e.,
abortion), Inuit are not part of these debates. There is no public debate and named position on
these issues in Nunavik, even though people have different opinions.
Physicians attributed patient and family trust/mistrust and linguistic barriers as determinants in
how conversations concerning EOL care took place. Many recounted stories of having been
perceived as devaluing the life of the Inuit when EOL choices needed to be made from a medical
perspective. They perceived that family perceptions concerning palliative sedation, withdrawal
of care and euthanasia would add to controversy concerning Bill 52/Law 2. This would likely
alienate medical caregivers from communities even further. A physician gave an example of a
family to whom she recommended disconnection of an elderly person from a ventilator. It had
been clear to her that he would not survive and, from her perspective, this would allow him to die
with dignity in a manner that remaining attached to machines would not. In spite of her efforts,
she felt that the conversation ended badly as the family mistrusted her assessment and intentions
and believed that she wanted to ‘pull the plug,’ which in their mind appeared to equate to
euthanasia, rather than done to save his life.
A nurse raised the complexity
of negotiating EOL decisions
with families whose decision
makers (spouse, children or
grandchildren) did not trust
each other. While part of the
family may support a patients
wish to receive pain
medication at the end of life,
others may attribute harmful
intentions to these members
and therefore block this
attempt. One nurse described
working with a patient who had two sets of children from two different partners. The first set of
children supported the administration of morphine to ease his pain; the second set did not.
According to this nurse, the man ended up dying in a considerable amount of pain. She
described how another patient expressed hesitation in accepting morphine as his wife and
What they (family) came away with…
was the sense that I was a
disrespectful white doctor who wanted
to ‘pull the plug’ on their family member
rather than providing him with the best
possible care, because there’s a lot of
mistrust there. (Physician)

72
children would potentially accuse him of what he labelled as an act of “euthanasia,” a direct
contradiction to family values concerning life and death.
A concern was raised by a physician that medical aid in dying and palliative sedation were
themselves a slippery slope in a context of Nunavik. In the North, current and historical colonial
practices had already threatened the survival of Inuit individuals and communities and health
care costs were already significantly heightened. Trusting the government to protect, value and
respect the inherent dignity of Inuit lives appeared to be naïve in this physician’s opinion who
advised that engaging communities in this dialogue would require utmost clarity and caution.
This was not a discussion to broach without extensive preparation.
Accurate pain assessment creates an additional complication in providing palliative care. Nurses
and physicians have indicated that Inuit patients may have difficulty in admitting pain to the
nurse or physician, in which case family members and interpreters are key in providing this
information.
Several clinicians highlighted the importance of having a full-time Montreal pivot nurse who
would work exclusively with Nunavik cancer and palliative patients. As misinterpretation and
confusion was already a concern, this nurse would be critical in the interpretation of medical
facts and assist families in the nuanced decisions that needed to be made. The cultural and
linguistic differences make this a hazardous territory to navigate. A pivot nurse would be able to
establish continuity and trust when nurses and physicians changed roles.
On a practical level, lack of continuity of care and individual physician values were also raised
as a concern in the administration of Law 2. Certain communities have only one physician
assigned to them, a physician who may come biweekly or monthly. This physician may be the
one having the conversation with families concerning palliative sedation or medical aid in dying
but may be away when the actual intervention is expected to occur. The rotating physician may
not have the relationship of trust so critical in these moments to families or communities.
Further, physicians or nurses in small communities may object to implementing Law 2. In these
cases, arrangements would need to be made to accommodate family and patient wishes.
Physicians stated that palliative sedation was already
being practiced in Nunavik. For example, morphine
was prescribed to patients to ease their suffering in
their final days, at times rendering the patient
unconscious. As the following accounts by Inuit
participants indicate, these practices were
controversial in family and community contexts.
11.2.2!Inuit!community!on!Law!2!and!the!Supreme!Court!ruling!
Once again, it is important to highlight the critical role that interpreters have in providing EOL
care. Not only are they the only professional translation services available in these instances, but
some are perceived as a more trustworthy representation of the medical profession than the
My father says that it
was the morphine that
killed his uncle. (Family
member)

73
doctors or nurses themselves. As a result, contrary to what physicians and nurses had recounted,
interpreters recounted instances in which patients had requested aid in dying. Having seen
examples of assisted dying on TV, they asked for this for themselves. Though infrequent, this
request had been made not when the physical suffering had been too great, but either a) when
patients knew their lives were ending and
did not want to be a burden on their
families during the dying process; or b)
when a patient had alienated himself
from his community due to acts of
violence and had no one to care for him.
For the interpreters, these were not
arguments for the implementation of Law
2 but rather meant that adequate support
measures must be put into place so that
these individuals receive the care that
they needed. The findings in this section
are based on conversation with family
and community members living in
Nunavik who had been invited to offer
their thoughts concerning perceptions of
death and choices concerning how people
choose to die.
Many Nunavimmiut describe predictable
death (as opposed to accidental and
traumatic deaths) as being part of the cycle of life and therefore accepted as such. As one person
stated, “death is one’s destiny.” Relatedly, some had been taught that they could alter their
destiny through behaviours, such as listening to elders, scriptures and by being a good person.
Likewise, destructive choices, such as destroying Inuksuks, could potentially shorten one’s life.
In this light, once a person believes that it is their time, they may die before measures can be
taken to arrange for home care or to develop a palliative care protocol for the patient. When
asked whether patients would like to have the option of palliative sedation or medical aid in
dying, Nunavimmiut cited personal or anecdotal examples of when someone had been given a
medication that helped them die more quickly. Some
spoke of patients who were offered morphine to ease
pain at the end of their lives and others of family
members who made this choice for their loved ones
when they were not capable to communicate for
themselves. Though not legally permitted, a
community member spoke of her perception that
medical aid in dying would be requested by families
whose members were no longer conscious. Other
community members stated medications other than
morphine that were prescribed to ease suffering and
shortened a patient’s life span, though no one could
not recall the name of the medication.
People don’t like
people to suicide.
(Community
member’s response
to medical aid in
dying)
The patient is not going to get
better and better. He is just
going to get worse and worse.
If he won’t wake up anymore,
it means that he is in strong
pain. If it’s starting to be like
this, will you want for him to
have an injection so that he
will die faster? If you refuse,
it’s ok. (Interpreter
recollection of physician’s
statement to family)

74
Reactions to these interventions varied from beliefs that Inuit peoples had been killed by
physicians, to moral disagreement in interfering with life, to the belief that people should have
the option to have medical aid in dying if suffering is great. A nurse spoke of the “myth of
morphine”: confusion that family members have concerning morphine, its potential to shorten
life and their perception that this is why it is prescribed. She recalled overhearing an Inuit family
member stating: “The fucking morphine is just killing them; it’s not doing no good. It’s just to let
them die. They (doctors, nurses) want them to die faster.”
Those who had accepted the administration of medications at the end of life for family members
were at times conflicted by this ethical decision and confused about what they had given consent
to. Had they just interfered with the length of life of their loved one? One woman described her
own suffering when faced with a choice to administer morphine to ease the pain of a dying
family member, an act which she perceived as potentially hastening death and thus to interfere
with God’s will. She consented as she did not want her loved one to suffer in pain.
Regarding the question of whether people should have the right to palliative sedation or medical
aid in dying, Nunavimmiut were diverse in their response. Many stated that the timing of death
is up to God and should not be interfered with, citing examples of people who had been given a
short time to live and who ended up living many years longer than expected.
Some believed that Inuit communities would like to have this option when suffering is
significant. One individual recalled seeing a lung cancer patient in his final days. Her memory of
the patient hooked to an oxygen tank that did not provide him sufficient air, gasping to breathe,
and consequently panicking had deeply impacted her. This memory illustrated why she thought
that local families would accept knowing their options concerning the recent Supreme Court
decision opening the door to physician-assisted suicide.
The eyes of one interpreter filled with tears when asked about Bill 52. She stated that medical aid
in dying already takes place in Nunavik. She stated that she had, on numerous occasions, seen
Inuit patients offered assistance to die by their doctors at the end of their life. She said that they
were administered an injection, and it hurt her to see this. For her, life was precious from the
beginning until the end. When asked if she knew what medication they were given, she
responded “no.”
11.3 What can be done? Law 2
The findings mentioned above indicate that:
1) Community members are forming perceptions of medical aid in dying and of palliative
sedation based on four primary factors: a) their experience of interventions given at the
end of life to family members; b) interpretations provided by friends, family and
community members concerning other patient experiences; c) what is seen on television
concerning the worldwide debate; and d) what the news has reported concerning the 2015
Canadian Supreme Court decision (Carter vs. Canada). Importantly, different
terminology is being used on national and international stages, terms such as euthanasia,

75
right to die, and doctor assisted suicide potentially elicits painful associations to
Nunavik’s colonial history and to its current struggles with its high rates of suicide.
2) What physicians and nurses identify in term of actions and intentions related to palliative
sedation and what family and community identify as their experience can contradict each
other significantly.
3) Discussions concerning palliative sedation and medical aid in dying are loaded with
moral tensions for the medical profession and Inuit community.
To move forward in addressing the requirements of Law 2 in Nunavik contexts, it would be
important to establish an advisory committee with substantial membership representing the
various aspects of the Nunavik community. Due to the complex historical and cultural context in
which this discussion occurs, as well as the climate of mistrust that exists between many Inuit
families and the medical profession, further guidance from leaders in the community would be
needed before establishing policies related to Law 2 in Nunavik. Areas for an advisory
committee to consider may include: a) a detailed understanding of how palliative sedation and
medical aid in dying are perceived in Nunavik communities; b) which cultural and
communication issues are relevant to the training of nurses and physicians in Law 2; c) how to
address the perceptions and misperceptions concerning palliative sedation that already exist in
community contexts; d) how health care centers maintain confidentiality in a process where
transparency is key to addressing community mistrust; e) how interpreters can be best trained for
these nuanced dialogues, both linguistically and emotionally; and f) whether (and how) to add
regional criteria to the current provincial guidelines established by the government; for example,
the current law requires the signature of two physicians requesting medical aid in dying. This
number is based on an assumption that physicians should have more authority than local
caregivers or elders in determining eligibility. Should these physicians be required to consult
with local advisory members before providing final approval? These questions arise from
concerns of the participants in this report. An advisory committee based in part in the
community would be needed to ensure these issues are elaborated further.
12. BEREAVEMENT AND GRIEF
Throughout the course of this study,
participants shared their own grief
experiences in the context of family and
community. We have chosen to include
some of these narratives as they provide
further insight into the emotional and
social contexts within which many
Nunavimmiut are providing EOL care. If
the adage is true, that residual emotions
from former grief experiences surface
when a new loss is felt, it is not
surprising that some families find
themselves struggling to draw on their
emotional reserves of strength to provide
So that was like, 5 griefs in a
row that included the whole
community in their grief, not
just the family. Since it was
happening a lot, it was getting
harder and harder. We are
still grieving from that person
who passed away, then all of
the sudden, someone passes
away again. (Wellness worker)

76
palliative care in the home.
12.1 Grieving and diagnosis
The diagnosis of cancer may initiate a profound sense of grief in patients and families, a grief
that may often go unspoken. A woman described the three days of silence that she experienced
with her partner who had just been diagnosed with cancer before she dared to ask him if she had
upset him. His response was one that no, he was not angry, but he was sad that he would not see
his grandchildren grow up. Immediately following his diagnosis, he had begun his grief process.
Another community member spoke of the grief journey that she and her siblings had begun when
they heard their parent had entered a terminal phase of cancer. She observed those around her
sharing a similar path, “But I know for sure that they grieve, the last of her presence, the active
mother or the grandmother, they start to grieve that already... And they’re grieving her losing
her autonomy, the harm of the sickness or illness.” In her account, this ability to prepare for the
death of her parent had been central to a grief experience that was not experienced in a traumatic
way.
12.2 Grief upon grief
The uniqueness of the Nunavimmiut
grief experience lies in the fact that each
family in the community will have likely
have recently experienced an accident or
suicide in their circle of family and
friends. As mentioned in the introduction,
Nunavik residents are 7.5 times more
likely to end their life through self-
inflicted injury and 3 times more likely to
die from unintentional injuries than in the rest of Quebec. One mother spoke of her son, who, in
the span of secondary school alone had lost 5 peers to suicide.
Many suggested that a large majority of the families living in Nunavik who choose to give EOL
care in their homes will be doing so in the context of a complex network of grief. Within the
context of terminal illness, ageing and EOL care, grief was not experienced as an isolated event
but as one of a series of grief experiences. As one interpreter stated, “people do not have time to
grieve. There are too many deaths. It’s like an onion, layer upon layer.” Another participant
recalled how the deaths of a sister, father and mother within a period of months had led to a
“never-ending” experience of grief that “was like forever.” As communities had originally been
formed by a few family clans, the likelihood that they were related to someone in the community
who had recently died through suicide or accident was unusually high. This phenomenon led to
what one interpreter referred to as “a big grieving, a long-time healing” as family and
community members were trying to cope with multiple losses. Another community member
spoke of this accumulation of grief and lack of resources to aid those who were suffering stating,
“people go a little crazy after a while.”
When death is due to sickness,
this is accepted because we have
to die somehow. When its due
accident or suicide, “there is a
big grieving, a long time healing.”
(Interpreter)

77
Participants spoke of two types of traumatic forms of grief would accumulate and potentially
intrude on the bereavement experiences of those providing EOL care: 1) the
collective/intergenerational grief related to historical experience of loss; and 2) the personal grief
related to the experience of loved ones dying
by suicide or accident.
In terms of collective or generational grief,
participants spoke of the dehumanizing of
Nunavimmiut through forced geographical
displacements of families, the separation and
permanent disappearance of family members
due to residential schools and hospitalizations
during the tuberculosis epidemic, and the mass
slaughter of sled dogs by the RCMP. On
September 16, 2015, a CBC news headline
read, “Nunavummiut are soaked in unresolved
grief.” An expert testifying at a coroner’s
inquest described how “lingering pain and
anger” related to intergenerational trauma was
one cause of the high rates of suicide in Inuit
communities in neighbouring Nunavut. Provincial borders do not prevent this reality from being
true in Nunavik as well.
When family members had died by suicide, participants spoke of intense feelings of
helplessness, guilt, anger, and sadness that left people paralysed and disengaged in their
interactions with others, often for years. In instances when children had committed suicide,
parents often stated that they were blindsided as these children may have shown no recognizable
symptoms of distress. Alcohol was often a factor in accidental and suicidal deaths, a concern
which those in leadership in community municipalities spoke about openly. The factor of
alcohol led to a lack of predictability in suicidal and accidental death, creating anxiety in parents
and family members who feared losing a child, sibling, parent or spouse to suicide.
I was grieving over a
sister, than my father
died a month later. I
didn’t have time to finish
grieving, than my mother
died. It was never-
ending. It was like
forever. (Community
member)

78
Though not labelled as cause for
bereavement, woven within participant
dialogues were accounts of parental
abandonment, neglect or abuse and
consequent displacement of a child. An Inuit
educator observed that as this suffering had
not resulted in death, the accompanying states
of grief and loss were often not recognized or
acknowledged for what they were. Rather,
focus was often placed on the resultant
maladaptive behaviours that resulted from these losses and separations. Notably, an unusually
high percentage of children had been relocated to different communities due to abuse, neglect or
violence that they had experienced in their families. Added to this were the children and youth
who had experienced the loss related to accidental death and suicide in their immediate circles of
peers. As another area of bereavement, children were present in the home when adult caregivers
were providing EOL care for aunts, uncles and grandparents. The amount of support that these
children receive to engage in their own bereavement
process depended on the capacity of their adult
caregivers, often experiencing their own grief, to
guide them.
If caregivers were not capable to help children grieve,
there were few support services in place. Teachers
and parents described how parents of children who
struggled with loss manifested their suffering through
angry, acting out on the one hand or silent and
withdrawn behaviour on the other. Teachers described
spending inordinate amounts of time doing
behavioural management in the classroom, relating this in part to the unresolved grief and trauma
that children were dealing with. Teachers may not have been informed if the child had
experienced a significant loss in their immediate or extended families. This left them in the dark
and unable to support children at these times. Social workers engaged with children in the
communities were overwhelmed with caseloads of children experiencing neglect or abuse and
described having little, if any time to offer. School counsellors expressed being at a loss in how
to help these children. The Kativik School Board appears to be working on providing additional
training and resources.
12.3 Beliefs and practices regarding grief
Complicating the ability of some individuals and families to process the multiple losses they
had,were the taboos and norms that had been passed along from one generation to the next
concerning what is legitimate to express in times of loss. One participant summarized how
beliefs concerning the expression of grief are shifting for many Nunavimmiut, speaking of the
“in-between generation” in which persons were transitioning between the old and new ways of
coping with loss. The new way allowed for more expression of emotion and conversation. The
scope of this project did not permit us to provide an in-depth exploration concerning the old and
People needing to survive on
the land had been told
don't grieve too long or you
stop the fire of living.
(Community member)
You blame yourself, you
blame the community,
you blame anyone
because you don’t know
what happened.
(Mother)

79
new ways of coping. However, some consistent themes emerged in our conversations with
Nunavimmiut which may be of use for those engaged in bereavement care.
12.3.1!Grief!in!nomadic!vs.!community!life!
One participant spoke of how, in nomadic times, grief was a “luxury,” one that could not be felt
for long. Families were so focused on survival that they had to keep moving, literally and
emotionally. Unlike in large communities where others may have stepped in to fill these roles
for a period of time, families often travelled in small groups where the participation of all was
needed for survival. By one account grieving
could prohibit the will to live.
In nomadic times, a family member who lost a
loved one had to turn to the tasks of the day
(whether hunting, cooking, sewing, fishing,
establishing shelter) to care for the remainder of
the family. Inuit living as nomads did not always
have the option of a common burial ground. Due
to the frozen conditions of the ground year
around, the deceased were buried under a pile of
rocks near the location they had passed away.
The stoic means of coping with death is gradually shifting. As someone explained: “Today, we
say when you are grieving someone, feel the pain, acknowledge it; let somebody know that you
are hurting.” Communities now come together to offer physical and emotional support. They
have churches for communal prayers and rituals, and cemeteries as a shared burial site. Families
are given permission to express loss and emotion through physical touch and tears. Some
explained that one reason that families value having patients in the home and community before
dying as that period just before and after death are vital in the family grief process. In these
times, individual and collective expressions of grief are acceptable. People are encouraged to
come together to grieve. Following the funeral, life returns to its rhythm and family members
are often left to their own devices. Some are unable to cope and rely on vices that numb the
pain. Others find healing in the church; others in participating in land-based traditions. As a
community member observed: “a lot of them… after something tragic happens in their family or
they’ve lost a family member, they go
to church a lot.. praying and singing
releases their loss… and a lot of them
go to the land. When they are on the
land, they do a lot of healing.. just
being in a tent, remembering their
memories of their loved one.” A
community member described an
encounter with winds and stormy
waves as part of her bereavement process: “I was out fishing and it was very windy, a lot of
waves and just being there. That’s how I feel, anger disappointment. I felt it in nature. This is
Let yourself grieve, don’t
stop crying or you’ll be
crying for 10 years if you
never let the grieving
part pass. (Community
member)
You can even have a relationship
with someone who passed away,
even though they are not there.
(Community member)

80
how I feel. It was refreshing.” This sensory experience in nature appeared to have provided a
place for her to feel her emotions.
12.3.2!Grief!and!letting!go!of!the!deceased!
Participants described how prior to the
influence of Christianity, there were
teachings in Inuit culture of places where
people went to die that closely resembled
the heaven and hell later taught by the
church. Most with whom we spoke
described beliefs about heaven and hell.
One person shared how this belief provided
comfort to her kids: “My girls say, “my
daddy’s up in heaven with God and God is
holding onto him.’ I say ‘that’s true. Your
dad is looking down on you and smiling.’”
In this light, several Nunavimmiut spoke of
beliefs concerning the potential dangers of
extended grieving for the deceased and for
the living. Some believe that if they grieve
too long, the soul of the person for whom
they grieve would not be free ti go to
heaven. As one participant explained:
“There is a myth about people who grieve
too long… ‘that I’m trying to get to heaven
and will not make it to heaven because you’re crying too much,’ the person’s tears will make the
stairs slippery.” She stated that beliefs such as these keep people from healing. Another belief
shared by some was that grieving the deceased too long would potentially result in the bereaved
joining that person in death. Another woman described how she had felt guilty for not having
been her grandfather’s caregiver until his death and for grieving him for too long. She
described: “Here in the community, they say when somebody passes away, for them to rest in
peace, you have to just them go. But for some, it’s very hard to just let someone you love go...
you don’t need to let go of someone who passed away.” A First Nation’s bereavement counsellor
had comforted her in giving her permission to continue to think of her grandfather, and she now
felt his presence, even though he had died.
Community members remained divided on whether extended periods of sadness in relation to the
deceased were acceptable or not. For some, unexpressed emotion was a causative factor
contributing to the increased rates of cancer in Nunavik. As one participant stated: “The body
becomes too toxic if you keep the emotions inside. It becomes cancerous.” Several persons spoke
of the potential emotional and physical impact of denying or keeping grief inside. In the words
of a parent who had lost his child: “If I have it in my heart and don’t express it, it’s going to
poison me. That’s the secret of keeping poison out of my heart.”
Nurses observed that internalized and unresolved grief was the cause for many visits to the
health center. What manifests as a physical symptom (e.g., stomach pain, headache, or another
Ça prend une maudite bonne
interprète pour traduire des
choses… puis là, un moment
donné je lui ai dit, ‘ça se
peut-tu là qu’elle manque son
mari qui est mort…pis là un
moment donné, elle se mise à
pleurer, pis pendant une
demi-heure là elle a pleuré
pis là ça sortait là... puis
après je ne l’ai plus revu.
(Long-term nurse)

81
body pain) may have been an indicator of emotional suffering rather than of a traceable physical
illness. Examples given included suffering within an ongoing abusive relationships, sadness
over the loss of loved ones, and the unresolved guilt and loss over the suicide of a child. As one
nurse stated, “Il y a beaucoup de bobos là qu’on pourrait écrire, mal à l’âme.” She gave an
example of a young woman who had come to the clinic experiencing chest pain. No physical
cause could be found. The nurse suspected the pain was related to unresolved grief concerning
the many family members that she had lost.
12.4 Institutional and community reponses to death
12.4.1!Grief!and!death!in!Montreal!
The funeral director in Montreal,estimated that a
small percentage of families choose to go to the
funeral home. Here the bodies of the deceased
are embalmed before being placed on a plane and
sent to the North. A mortician who has been
working with Nunavik families for 27 years
provided his own reflections as to what he often
observed in Inuit family members who came to
visit the funeral home. His narrative spoke
poignantly of the experience of families who are
alone and away from family and community at
time of death. He used the French term,
“désemparé” a word which communicates a
sense of being in distress, distraught, and helpless, as he compared this population to the other
clients he receives. Unaccompanied and alone at the funeral home, Nunavimmiut had come to
see the body and to make decisions concerning preparations for the body to be sent back to the
North. Decisions included clothing for the deceased, whether to upgrade the casket from the
grey, pressed wood casket paid for by the government (400 dollars more for an actual wooden
casket), and whether to add fresh flowers. Once these decisions had been made, the body of the
deceased was brought to the airport and flown back to the community. For scheduling reasons,
the family members usually took a different flight.
As noted earlier, Nunavik has a high infant mortality rate; five times higher than the rest of
Quebec. When these deaths occur in the neonatal unit of the hospital in Montreal, efforts were
made to accommodate the family. A spiritual advisor was available to walk through the process
with the families. Some families asked for sacraments for the sick, prayers, blessings and songs.
Parents and extended family were invited to hold, bathe, dress, and care for the infant once the
network of tubes and IV’s had been removed. Some family members chose to make an imprint
on a card of the infant’s foot or hand that they took with them.
12.4.2!Community!engagement!
Someone drives them
(family of deceased)
here and then they are
lost. … They have no
support… They don’t
know who to trust.
(Montreal mortician)

82
As mentioned above, extended families and communities would come together to accompany,
cook, clean and other tasks during the days immediately preceding or following death. When
possible, family members located in other communities would fly in as well. Depending on the
number of family members available and on the needs that present themselves, local volunteers
from the women’s auxiliary were also likely to become involved with the family (see Section 6).
Their engagement with the bereavement process itself depended on their relationship to the
family, the place of dying and the expectations of the community. Some would keep vigil during
the night or offer to sing and pray with the family during or after the dying process.
Until now, this group of volunteers from the women’s auxiliary had also taken sole responsibility
for washing the deceased and preparing them for burial. However, in one community the
auxiliary members had started to coordinate efforts with the CLSC so that they would not be not
responsible for preparing the bodies of those who had died a traumatic death (e.g., accident,
murder or suicide). This burden had become too emotionally heavy.
Funerals usually occurred within two or three days of the person dying. These ceremonies
closely replicated a Sunday church service, with hymns sung and a message given by the local
pastor. Depending on the deceased, their family, and community, there were no set expectations
in terms of if and when there was visitation for the family, whether there was a viewing of the
body or open casket, or whether there were eulogies offered during the church service. All were
invited to support the family in their bereavement. Schools, municipal offices, and businesses,
including grocery stores, have been closed for a funeral. The funeral would usually take place in
the local Anglican church and be followed by a short burial service in the cemetery. As all
communities now had earth-moving equipment, bodies were placed year round in simple
wooden coffins in the ground and covered with flowers, usually artificial, as these were the only
ones available to those living in the North.
Importantly, the experience of bereavement was altered when the police required an autopsy to
be done on a body. A nurse described the potential impact of this on families when she spoke of
the anger and anguish of a mother whose son
had died in an accident. Upon her arrival at the
health center she had not been permitted to
touch or embrace him.
12.4.3!Community/institutional!organized!
initiatives!
Nunavik communities and health centers have
recently embarked on initiatives to provide
bereavement care to communities. The
following four examples come from
participants and organizers who had been
engaged in these initiatives:
1. The Residential Health Support Workers
Give us an opportunity to
say what we want to say.
It’s a big release to know
that people know. When
you are in it, you think you
are ok, but when you look
at how your life is, you see
that its not. (Community
member)

83
A group located in Kuujjuaq, The Residential Health Support Workers had, as its first mandate
within the context Canada’s Truth and Reconciliation process, the task to facilitate healing for
Nunavimmiut who had been placed in residential schools. This acknowledgement of the
ongoing bereavement faced by those who had been separated from their families, some placed
into abusive environments, had been healing for many.
A woman who had participated in the Truth and Reconciliation hearings described the impact for
her:
All the stuff was just coming out. I felt, ‘I am not the only one.’ It’s hard to express what
you went through but when someone else is saying it for you….
We have been hurt. Someone is listening. Give us an opportunity to say what we want to
say. It’s a big release to know that people know.
When you are in it, you think you are ok, but when
you look at how your life is, you see that it’s not.
The mandate of the Kuujjuaq team eventually expanded
to working with families who had recently experienced a
traumatic death by accident, murder or suicide. This
team went into communities within a couple of weeks
after a funeral, recognizing that these families were at
risk once the communal grief process had ended and the
shock had diminished. They provided an assessment of
family members, provided means through which family
members could express their grief and loss and, if
needed, signaled ongoing risk to community social
support structures.
2. Puttautiit conference
We also spoke with representatives as they were
organizing Dialogue for Life, an event that took place for the first time in Puvirnituq in 2015.
Patterned after the Dialogue for Life conference held annually in Montreal, this 5-day session
gathered individuals engaged in communities to train them in suicide prevention. One
component of this training included education and support concerning grief and bereavement.
Long-term goals were to rotate this conference through Nunavik communities on an annual
basis.
3. Maison Monbourquette training
In 2013, a group of wellness workers came together in a community for training concerning grief
and bereavement. They met over a period of five days during which they learned about grief
reactions and accompaniment in the bereavement process. Originally intended to be a series of
trainings with ongoing support, this initiative came to an end due to lack of funding.
4. Kativik school board
We also spoke with school counsellors who had received their first training in suicide prevention
and bereavement. This training had included models that were drawn from First Nation’s
On peut renforcir
des initiatives pour
accompagner les
gens en deuil et
favoriser ainsi les
résolutions saines et,
peut-être, prévenir
les multiples couches
de deuils non-
résolus.
(Physician)

84
communities, as well as books that could be offered to children who were experiencing loss.
One of these resources had been written from an Inuit perspective and presented in Inuktitut.
12.3.6!Individual!engagement!with!bereavement#
!
It is important to emphasise that within communities, there were many unofficial and
unidentified individuals who were providing bereavement care services. We did not have time to
thoroughly assess these initiatives in community contexts. A more thorough assessment would
clarify the capacities already existing within communities that might serve as models in program
development. The following three examples illustrate individuals who, outside of their job
mandate, had recognized and responded to the needs in their communities.
1. At school
We spoke with school administrators who welcomed students to stop in if they needed a break
from the social or intellectual demands of the class. Some students spoke of their loss, others
remained in silence. Teachers welcomed students time after school, and at times in their homes
to provide a healing relational space for youth.
2. Out on the land
We spoke with a community member who had been hired by the school to take kids out on the
land to learn traditional skills when the formal structure of school was not conducive to their
emotional or learning needs. Some of these youth had experienced multiple traumas and loss.
Another community member described how she accessed the land as a healing space for adults
who had suffered loss. She found that these environments permitted a fuller expression of
emotion and grief. Memories would surface in this context, both positive and painful, allowing
people to access their grief. In addition, this outdoor environment permitted a sensory encounter
from within which emotions anger or sadness could be expressed.
3. In the work place
Another example in which individuals engaged in bereavement care emerged in a conversation
with a hospital chef. This individual described the values that he tried to instill in his young
employees, many who were struggling with multiple forms of loss. As he described his
encounters and approach, it was clear that the environment that he had created in the work place
instilled a sense of meaning and hope in youth. Due to his success, those working in the justice
system would solicit him to hire youth at risk.
12.5 Improving grief and bereavement care
Ideas to improve grief and bereavement care came from both Inuit and Qallunaat participants.
They emphasized the importance of helping communities recognize the multiple layers of loss,
addressing suffering in its various forms, and providing interventions that allowed Nunavimmiut
to envision a future.
12.5.1!Incorporating!community!initiatives!in!care!

85
Many indicated that the Southern model of healing, such as dialogues in a psychologist’s office,
would not be welcomed by many in the communities. Rather, Inuit trained professionals who
integrated home-based and land-based interventions were needed.
1. Training opportunities
Many of those who were engaged in providing bereavement care in communities spoke of the
need to receive regular training in order to respond to the overwhelming needs with which they
were faced. Continuity was emphasized as key to this training, in part because this provided the
context for ongoing support, a form of self-care for those taking the training; and in part because
the needs that they faced were nuanced and widespread. One period of training was not
sufficient.
Inuit professionals indicated that they were someone insular in their work in local and provincial
contexts. Little was known for example, about how communities in Alaska or Greenland were
addressing these same issues. They emphasized the importance of building these circumpolar
networks as a means through which to develop training in Nunavik communities.
2. Funding and personnel
Some community-based workers initiating grass-roots interventions were active in accessing the
training and literature that they needed to provide services to individuals and families. In these
instances, the problem lay, not in knowledge acquisition, but in being able to develop their
services to meet the many needs of their communities. With increased funding, they would be
able to expand as needed.
12.5.2.!!Bereavement!care!services!for!individuals!and!families!
Several participants emphasised that unresolved grief manifested in coping behaviours that they
felt needed to be incorporated into any approaches to bereavement care in communities.
1. Anger symptoms
When he heard about this research into EOL care in
community contexts and our desire to identify how to
support communities, a man had an immediate,
spontaneous reply, “we need to deal with our anger.”
He elaborated that many persons reacted to their loss
and suffering with anger. They did not have other
tools to deal with the extreme distress that they experienced. This account was corroborated by
others who described men and women being emotionally paralysed or frozen in a state of anger
in reaction to death and loss. They stated that men had a greater risk of transforming this anger
into violent behaviours and women into withdrawal from family and community.
2. Substance abuse symptoms
Participants spoke of family members turning to alcohol or drugs, not only as a means of self-
medicating in suffering, but also as a way of connecting to sadness. They described how in not
having anyone to speak with, the emotions had become frozen. Alcohol allowed access, though
not healing, to this pain. Substance abuse is widespread in Nunavik. Those with whom we spoke
We need to deal with
anger (Community
member).

86
largely agreed that unresolved intergenerational and personal bereavement experiences are
ongoing and major causes of substance use. Few intervention programs exist in Nunavik to work
with these individuals
3. Grief and bereavement services
Community members described how they or family
members lost years of their lives as they struggled merely
to survive in the depth of their grief. To cope, one family
had reached out to someone whom they trusted though did
not work in mental health services. This person’s
normalizing of the family’s prolonged feelings of anger
and sadness had been key to their healing. A family
member emphasized the need for other families to have
options of bereavement care services during their time of
grief.
One participant cautioned against providing only minimal services to individuals and families.
She expressed concern about current interventions that encouraged individuals to express their
anger and sadness as a form of catharsis and did not take the additional time to help them
develop a vision for their own future. From her observation, people’s identities would then
become wrapped around their grief; they were not yet free to resume living. They had not had
the opportunity to complete their healing as the financial resources allotted to their care were
limited.
13. PROJECT LIMITATIONS
As with any project, we faced time and resource constraints. As a result, this report is limited in
the following areas:
1. Prevention and intervention services needed to support an aging population
Many elderly are faced with slow decline in physical and mental capacities which can begin long
before palliative care is needed. This population may be restricted to their homes long before
health care providers feel EOL interventions are necessary. We have not captured this trajectory
in this report.
2. Children’s perspectives
We did not speak with children as part of this study. Our limited sense of children’s experience
of death and dying comes through the perspectives of a small number of parents and teachers
with whom we spoke. Children’s experiences of death and dying in their own homes,
communities or in a distant city requires future study, as does their needs concerning
bereavement.
3. Adequately representing the entire territory of Nunavik
Each village in Nunavik has its own unique realities and capacities. We were only able to visit
four villages. Though we hope that we have presented an adequate picture for moving forward in
I lost 4 years of my
life, just grieving,
not knowing what to
do. That’s a big
loss. (Community
member)

87
planning EOL care in all Nunavik communities, we recognize that the portrait that we provide
may also be incomplete.
14. WHAT’S NEXT?
In order to translate the results of this study into concrete action, we have summarized some of
the ‘recommendations’ offered by participants. This list is not exhaustive and we encourage
readers to refer to the more detailed lists earlier in this report.
14.1 The next 12 months
14.1.1!Palliative!care!resources!and!training!for!nurses!and!physicians!
On an immediate level, these findings confirm the importance of current initiatives to train
physicians and nurses in providing palliative care to Nunavik patients. These efforts appear to be
well underway, including video-conferencing, written materials and phone consultations as
means through which to acquire the needed expertise.
14.1.2!Education!in!Law!2!and!the!Supreme!Court!decision!
These findings also confirm the importance of current initiatives to educate physicians and
nurses concerning Law 2 and the Supreme Court ruling with the consequent laws. Results of this
study suggest that physicians and nurses practicing in the North may be themselves uncertain
concerning the legalities of what is permitted. Furthermore, most of the communities in the
North receive their news from a national radio station and are thus drawing on information
provided by the federal government as they consider options available to themselves and their
families. Physicians and nurses will be on the frontlines discussing this with patients.
As interpreters, social workers, mayors, pastors and municipality members and elders in each
community are key to communicating and clarifying misperceptions concerning euthanasia and
assisted suicide, their expertise is critical to understanding how to educate communities on their
rights and treatment options. They will know how proactive a position to take and how to
approach this with patients who may request medical aid in dying. The interpreters are
responsible for direct communication with families. The mayors, pastors and municipality
members have the authority and capacity to address potential conflicts between family members
or between families and Qallunaat health care providers.
These dialogues concerning the legalities of the provincial and federal laws in terms of
euthanasia and assisted suicide are filled with nuance. A literal translation would be difficult for
an interpreter. If we add to that the contextual factors (i.e., mistrust of physicians and nurses,
confusion between suicide and medical aid in dying, and family member’s varying coping skills
in the face of loss), it becomes clear that engaging with interpreters and community leaders is
key to moving forward.

88
14.1.2!Training!and!recognition!of!interpreters!
As this report indicates, the interpreters are an important gateway in communication between
physicians and nurses, patients and families. Interpreters have expressed not having the adequate
resources with which to address the psychosocial needs of families who may be responding to
difficult messages from physician and nurses or to needs of family members. They also have
requested visual and written materials so that they may more accurately translate human anatomy
and medical procedures. Interpreters have expressed feeling devalued by the fact that the
expertise that they develop on the job is not matched with adequate compensation or recognition.
Considering their level of knowledge and the significant stress of their position, this should be
re-examined.
14.1.3!Support!for!existing!bereavement!care!initiatives!in!communities!
Several initiatives have begun in Nunavik to address the bereavement care needs of Nunavik
children, youth and families. Many of these are land-based interventions, others drawing on
faith communities, some drawing on a rich tradition of creative expression, while others building
on community support practices. Many also incorporate models of bereavement and grief
support learned outside of the community. Identifying and supporting these community-based
programs may complement existing initiatives such as the Puttautiit conference (mentioned in
section 12).
14.1.4!Home!services!and!inpatient!facilities!for!elders!!
As elders 65 years of age and older are living longer than before, local nurses are not always able
to keep up with their assessments, preventative care and medical interventions. Further, facilities
to house elders, whether for respite or long-term care, are inadequate, leading to EOL care
patients staying in acute care beds and thus causing shortages for acute care patients. Addressing
home services and inpatient facilities for elders is of immediate concern.
14.2 The following 12-24 months
14.2.1!Education!in!disease!progression!and!EOL!care!!!
As elders are living longer, dementia in various forms has become an increasing concern.
Prevention approaches, specialists who can provide accurate diagnoses, and care facilities will be
needed for these populations. In addition, patients and family members may not have the
linguistic or technological capacities to seek information once a terminal diagnosis has been
given. Though community-based wellness workers are engaged in increasing health awareness,
they are not always able to do public health announcements or educate community members
concerning EOL care. Short videos in health centers, grocery stores and municipal offices as well
as Nunavik-wide FM radio announcements may increase people’s knowledge, thereby preparing
them for addressing EOL care needs when the time arises.
14.2.2!Psychosocial!support!services!for!patients!and!families!through!the!identification!of!
existing!cultural!and!spiritual!practices!

89
When conversing with Qallunaat and Inuit participants concerning EOL care, the conversation
frequently turned to the emotional and psychological coping capacities of patients and families
who were confronted with the end of life realities, decision-making and care. Many noted that
they did not see families as being able to continue providing care if psychosocial support and
mental health services were not developed in communities or offered to patients when in
Montreal. Once again, this would be most effective if offered in collaboration with community-
based initiatives in Nunavik contexts. Likewise, in Montreal contexts, nurses have identified
patients and family members having difficulty coping under times of stress related to illness,
diagnosis and separation from family; the MNQ, local CLSCs and hospitals often do not have the
personnel to listen and to provide stress-reducing alternatives.
14.2.3!Nursing!staff!support!in!Nunavik!and!Montreal!
Nurses face overwhelming challenges. As frontline workers, they are recipients of the
immediate consequences of the social suffering of Nunavik patients through an ever-revolving
door of patients, during CLSC business hours and during after hour emergency care. Nurses in
the North and South have described their fatigue related to the direct services they provide as
well as the decline they perceive in the overall functioning of many Nunavik children and
families. In light of this, high patient caseloads and inadequate support places nurses at risk for
burnout. Several have suggested that reducing nurse caseloads, increasing nurse support in the
North, and increasing the hours of pivot nurses in Montreal contexts would improve the quality
of care and help retain nurses.
14.2.4!Family!education!and!respite!services!
Families who desire to keep patients in the home often end up unable to sustain this level of care.
This may be due to fatigue or lack of preparedness and accompaniment. Some have suggested
illustrated or video resources for patients and families, and consultations with nurses in which
the potential changes in the patient and the extent of care required by the family is clearly
delineated. Respite rooms in communities or respite care providers on home visit for extended
periods may permit families to provide more extended care. Until now, the church-based
women’s auxiliary has been able to support families for short periods; however, members state
that they are themselves ageing and there are few younger members joining.
14.3 Long term vision: 2-10 years
EOL care in Nunavik is at an important crossroads: should the health care system assume
responsibility for dying persons, or should it work in collaboration with communities to develop
EOL care services? Participants from Inuit communities and Southern institutions have largely
expressed a desire for the latter.
14.3.1!The!North!and!South!gap:!re_examining!the!public!health!approach!to!EOL!care!
All health care professionals can promote improved aboriginal health in Canada. This can
happen daily for those caring for patients of all ages in a wide variety of settings, including
rural communities, urban environments, or tertiary care centres. We also need to advocate
in key areas to promote aboriginal health. These include helping all Canadians to

90
understand the history of aboriginal peoples, with the negative legacy of colonization and
the residential school system; the role of the social determinants of health; and the urgent
need for increased education and employment. We must also advocate for more aboriginal
health care professionals; multidisciplinary teams; increased aboriginal self-government,
with control of programs including health and education; improved care for patients,
families, and communities through adequate funding and relevant programs that are
developed with aboriginal input and are appropriately evaluated; and research directed by
or undertaken in partnership with aboriginal peoples. This is a long list but all these issues
are important, interrelated, and need to be championed…. In the past too much research
focused on disease and dysfunction, which only served to emphasize the negative and did
not add useful information to develop practical solutions.
(Macaulay, 2009).
Through these words, Macaulay proposes an agenda for the improvement of Indigenous health in
Canada, one which is marked by collaboration with, and advocacy for Indigenous communities.
This is not an easy task. In 1998, O’Neil (1998) wrote that the development of Inuit-run health
organizations in Canada is difficult to accomplish as local level, socially-oriented health
ideologies are hampered by a “dominant capitalist framework.” As a result of this dominant
framework, “a profound separation of knowledge and power between Inuit patients and non-Inuit
health care providers has resulted” (O’Neil 1998). Furthermore, he stated that barriers existed
within communities themselves: Inuit employees were distant from training centers; there was a
lack of commitment by federal funding agencies to provide training that adapted to Inuit
realities; many Inuit preferred job opportunities close to home; and some were discouraged by
their families to work in the health sector (O’Neil, 1998). This analysis, though dated nearly 20
years, is still pertinent today. Nevertheless, participants from Northern and Southern institutions
and communities provided several examples of collaboration and shared decision making in end-
of-life care and many communities have already developed support services for those going
through the dying process.
Some communities have family houses3 that are run and managed by community members and
that offer spaces and programming for the promotion of health and well being in children,
families and elderly. Church volunteers are also actively engaged in providing EOL care and
supporting families during this process. The hunter’s support group seeks to address gaps in
terms of food. Another men’s group had organized to make needed home repairs. Community
individuals offered grief support to children and adults in the face of death. Churches offered
public spaces for grief and bereavement. Some schools are bringing in health professionals to
encourage students to pursue careers in these fields. Community individuals offered grief
support to children and adults in the face of death. Had we had the resources to investigate
further, certainly more of these community practices would have become evident.
14.3.2!A!sustainable!approach!to!EOL!care!
1. Collaboration between health care centers and municipalities
3 There are currently only two or three family houses currently operating in the region, most in their exploratory
stage of development. Some believe that in the future, they have the potential to engage in supporting families
offering EOL care.

91
Collaborations between federal, provincial, regional and local funding bodies are key to
sustainable EOL care. Participants provided examples of where these collaborations have been
successful, such as in the building of more residential space for elders or for those needing
respite as well as the development of family houses. This collaboration is a solid foundation
upon which to develop a shared vision for EOL care in community contexts.
2. Education and recognition
Significant barriers to developing sustainable care is that of formal education requirements and
the barriers that student’s encounter in seeking to meet these in a completely foreign
environment in the South. Some have suggested building collaborative training relationships
with Arctic College in Iqaluit as students are entering their studies. This would perhaps serve as
a bridge for students who are not ready to live so far from home and their culture. Others have
suggested education centers in the North in which students come together to receive courses
through long-distance learning.
Some interpreters have requested that the current system of compensation and
professionalization needs to be reconsidered to include Inuit cultural forms of knowledge
acquisition; particularly, training that is attained through observation and experience. If the goal
is to empower communities to sustain or increase their engagement in providing EOL care, it
will be prudent to re-examine how interpreters, family workers/assistants, and paid escorts are
recruited, retained and professionalized and how formalized the process needs to be.
3. Men ageing alone
According to the 2001 Statistics Canada report mentioned earlier, men over the age of 65 are
expected to live an average of 5 years longer than their wives, men until the age of 87, and
women until the age of 82. As on home care nurse explained, this has important ramifications in
considering EOL care for men as their traditional roles did not include domestic tasks such as
cooking, shopping, and cleaning and some are left not knowing how to care for themselves in
their homes.
CONCLUSION: EOL CARE IN NUNAVIK
Through this report and the dialogues that are represented within, we have sought to provide a
portrait of EOL care services in Nunavik community and Montreal contexts. Woven into the
narratives are Nunavik-specific demographic, geographic, historical, social and spiritual
contextual factors and how they shape the provision of EOL care in community and institutional
contexts. We have shared participant descriptions concerning family and community-based
services, CLSC services and Montreal hospital contexts of care. Participant perspectives
concerning strengths, challenges, and variables in care provision, as well as participant
recommendations for how to improve upon these have been discussed in detail. As Quebec and
Canada at large are presently at a critical juncture concerning the development of laws related to
patient’s rights to seek physician intervention in dying, we have also added information gleaned
through our interviews that may inform how this dialogue may be approached in Nunavik.
Three key themes emerged in our interviews which we felt necessitated special attention:
bereavement and grief, the role of interpreters and challenges in communication on diverse levels

92
of service provision. As these themes were central to an understanding of the challenges faced
by health care providers as well as patients and families, we chose to represent these reflections
of participants in a more focused manner.
The fact that many persons chose to participate in this study clearly indicates that EOL care
needs are of vital importance to many individuals and families for whom cancer, disease and
ageing have presented a unique set of challenges. We hope that this report serves as a
springboard for institutions and community leaders seeking to provide a coordinated approach to
future care.

93
15. FOR FURTHER CONSULTATION
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94
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Text format
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Stern, P. R., & Stevenson, L. (2006). Critical Inuit studies: An anthology of contemporary Arctic
ethnography. Lincoln: University of Nebraska Press
Weetaluktuk, J., Bryant, R., Etok, T., & Avataq Cultural Institute. (2008). Le monde de Tivi
Etok: La vie et l'art d'un aîné inuit. Québec: Éditions MultiMondes.
DVD format
Abbott, L., Mastroianni, B., Sturges, S., Films for the Humanities & Sciences (Firm), Kativik
School Board Educational Television., & Levy Entertainment. (2003). The history of Nunavik: In
the footsteps of the Inuit. Princeton, NJ: Films for the Humanities & Sciences.
Films for the Humanities & Sciences (Firm), Films Media Group., & SFP productions. (2005).
Nanook revisited. New York, N.Y: Films Media Group.
Flaherty, M., Lepage, M., Isaac, E., Simard, M., Simard, M. (2010). Martha qui vient du froid:
Martha of the North . National Film Board of Canada.
Heath, J., In Warner, E., In Chaput, J., Emikotailuk, S., Arctic Eider Society, (2012). People of a
feather. Sanikiluaq Running Pictures. Flowing Rhythms.
Kunuk, Z., Qulitalik, P., Cohn, N., & Igloolik Isuma Productions. (2008). Isuma Inuit classic
collection: 1987-2007. Igloolik Isuma Productions.
Lapointe, P., Echalook, B., Mastroianni, B. (2004). Inuuvunga: I am Inuk, I am alive, Kativik
School Board., & National Film Board of Canada.

97
Sandiford,M. Nungak. Z (2006) Qallunaat! Why White People are Funny. National Film Board
of Canada.
Walton, A (2007). Arctic son, Big Mouth Films. Brooklyn, NY
See the National Film Board of Canada for 27 categories of documentaries concerning Inuit
culture and society. Several recent films have been produced in direct collaboration with Inuit
communities in Canada: https://www.nfb.ca/subjects/inuit/
15.3 Palliative Care
DeCourtney, C. A., Jones, K., Merriman, M. P., Heavener, N., & Branch, P. K. (2003).
Establishing a culturally sensitive palliative care program in rural Alaska Native American
communities. Journal of palliative medicine, 6(3), 501-510.
DeCourtney, C. A., Branch, P. K., & Morgan, K. M. (2010). Gathering information to develop
palliative care programs for Alaska’s aboriginal peoples. Journal of palliative care, 26(1), 22-31.
DeCourtney, C. A., Branch, P. K., & Morgan, K. M. (2010). Eleanor McMullen's Story. Journal
of palliative care, 26(1), 67.
Fobister, V., Linkewich, B. Potson, J., and Sletmoen, W. (2014). Caring for the Terminally Ill:
Honouring the Choices of the People. Center for Education and Research On Ageing and
Health, Lakehead University, ThunderBay, ON
Hill, M., Collins, S., Moonshine Movies., Lien Foundation., Screen Australia., & Film Victoria.
(2012). Life before death: A collection of films about living well and dying better. St. Kilda, Vic.:
Moonshine Movies.
Kitzes, J. A., & Domer, T. (2004). Palliative care: an emerging issue for American Indians and
Alaskan natives. Journal of Pain and Palliative Care Pharmacotherapy, 17(3-4), 201-210.
National Bereavement Teleconference, Sesno, F., Hospice Foundation of America., Hospice
College of America., & Limelight Communications. (2010). Cancer and end-of-life care.
Washington, DC: Hospice Foundation of America.
National Council for Palliative Care Great Britain & Center for Health and Gender Equity.
(2011). We are living well but dying matters. London: National Council for Palliative Care.
See the National Film Board of Canada for a series documentaries concerning illness and
dying: https://www.nfb.ca/subjects/health-and-medicine/coping-with-illness-and-dying
15.4 Capacity building, participatory methodology

98
Bartlett JG, Iwasaki Y, Gottlieb B, Hall D, and Mannell R. (2007) Framework for Aboriginal-
guided decolonizing research involving Metis and First Nations persons with diabetes. Social
Science and Medicine, 2007;65(11):2371-2382.
Cochran PAL, Marshall CA, Garcia-Downing C, Kendall E, Cook D, McCubbin L, and Gover
RMS. (2008) Indigenous ways of knowing: Implications for participatory research and
community. American Journal of Public Health, 98(1):22-27.
Knoblauch, H. (2005). Focused ethnography. In Forum Qualitative Sozialforschung/Forum:
Qualitative Social Research (Vol. 6, No. 3).
Macaulay, A. C. (2009). Improving aboriginal health: How can health care professionals
contribute? Canadian Family Physician, 55(4), 334-336.
Macaulay AC, Commanda L., Freeman W., Gibson N., McCabe M., Robbins C., and Twohig P.
(1999). Participatory research maximizes community and lay involvement. British Medical
Journal, 319:774-778
NSW Health Department. (2001) A Framework for Building Capacity to Improve Health. Better
Health Center, Sydney Australia. Retrieved August 2014 from www.redaware.org.au
Simmons, A., Reynolds, R. C., & Swinburn, B. (2011). Defining community capacity building:
Is it possible? Preventive medicine, 52(3), 193-199.
Turton CLR (1997). Ways of knowing about health: An Aboriginal perspective. Advances in
Nursing Science, 19(3):28-36.#
15.6 Interpretation in health Care
Andrulis, D. P., & Brach, C. (2007). Integrating literacy, culture, and language to improve health
care quality for diverse populations. American journal of health behavior, 31(Supplement 1),
S122-S133.
Bowen, S. (2001). Language barriers in access to health care. Ottawa: Health Canada.
Kaufert, J. M. (1999). Cultural mediation in cancer diagnosis and end of life decision-making:
The experience of Aboriginal patients in Canada. Anthropology & Medicine, 6(3), 405-421.
Kaufert, J. M., Putsch, R. W., & Lavallee, M. (1999). End-of-life decision making among
Aboriginal Canadians: interpretation, mediation, and discord in the communication of" bad
news." Journal of palliative care, 15(1), 31.
Kwan B, Frankish J, Rootman I, Zumbo B, Kelly K, Begoray D, Kazanijan A, Mullet J, Hayes
M. (2006): The Development and Validation of Measures of “Health Literacy” in Different
Populations. UBC Institute of Health Promotion Research and University of Victoria
Community Health Promotion Research.

99
Norris, W. M., Wenrich, M. D., Nielsen, E. L., Treece, P. D., Jackson, J. C., & Curtis, J. R.
(2005). Communication about end-of-life care between language-discordant patients and
clinicians: insights from medical interpreters. Journal of Palliative Medicine, 8(5), 1016-1024.
Putsch III, R. W. (1985). The Special Case of Interpreters in Health Care. Jama, 254(23).
Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H.
(2012). Health literacy and public health: a systematic review and integration of definitions and
models. BMC Public Health, 12(1), 80.
15.5 Websites:
Palliative Care Training Resources
Canadian Virtual Hospice
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
Lakehead University: End of Life First Nations Workbook:
http://eolfn.lakeheadu.ca/eolfn-workbook
Legacy of Hope Foundation: Raising Awareness of the Legacy of Residential Schools
http://weweresofaraway.ca/
Pallium Canada
http://development.pallium.ca/
Saint Elizabeth First Nations, Inuit and Métis Program
https://www.saintelizabeth.com/FNIM/Home.aspx
Inuit and Indigenous Advocacy and Educational Organizations
Avataq Cultural Institute
http://www.avataq.qc.ca
Inuit Tapiriit Kanatami (ITK)
https://www.itk.ca/about-itk
Makivik Organization
http://www.makivik.org
National Collaborating Center for Aboriginal Health (Canada)
http://www.nccah-ccnsa.ca/en/listingindex3.aspx?sortcode=2.7.9&page=2
Nunatsiaq Online
http://www.nunatsiaqonline.ca/
Inuit Circumpolar Council Canada
http://www.inuitcircumpolar.com/
Nunivaat: Nunavik Statistics Program
http://www.nunivaat.org/
Nunavik publications
http://publicationsnunavik.com/books/

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!
!
16 APPENDIX
16.1 Appendix A: Interview Guide
!
!
!
!
!
!
EOL!Care!for!Inuit!Patients!in!Nunavik,!Quebec!
!
Principal!Investigator:!Dr.#Paul#Brassard,#MD,#Division#of#Clinical#Epidemiology,##
McGill#University#Health#Center#
Co_investigators:!Dr.#Mary#Ellen#Macdonald,#Faculty#of#Dentistry,#McGill#University;!and!
########Dr.#Dawn#Allen,#Associate#Director,#Palliative#Care#McGill#
Research!Assistant:!Nicole#Rigillo,#PhD#Candidate,#Department#of#Anthropology,#McGill#University#!
!
Semi Structured Interview Guide-November 2013
A. PATIENTS
Target participants
• Inuit patients who have been determined to be at EOL by MUHC treating physician and/or
community physician.
Questions
1. Knowledge and understanding of, and experience with, EOL (EOL) care for
patients
a. Can you tell us the story of your illness? What is your health situation now?
When were you diagnosed? Who cared for you during the different phases of your
illness? Where did you receive treatment?
b. What is most important for you at this stage in your illness?
c. Do you think other things might be more important for you later?
d. If so, what kinds of things?
2. Decision making and information sharing during EOL care
a. Tell us about how you came to return home at this stage in your illness.
b. How did you get information about your illness?

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c. What information about your illness did you get? From who? When? Was it too
much or too little information? Who was there when you were given the
information? Who did you talk with?
d. How can these kinds of discussion be made better?
e. Were there any difficulties you had to face? What can be made better? What
services would you have liked to have had?
3. Description of EOL services for patients in/from Nunavik (This section will be
read/administered together with section 4 below, which addresses home care).
a. You are being cared for at home/in the health center. Was this your choice? Tell
us how this has been for you? What works well? What could be improved?
b. Who is involved in providing your care?
c. How could your experience be made better?
4. Home care for patients at their EOL in Nunavik
a. Tell us about your experience with homecare.
b. What do you think/feel about home homecare for Inuit patients?
c. Who is involved in providing care for you at home?
d. What is working well for you? What is not working well with your home care??
e. What are the benefits of receiving care at home? What could be made better?
5. Symptom management
a. We would like to hear more about your illness. What symptoms have you
experienced lately?
b. What symptoms have been most difficult for you?
c. How were your symptoms taken care of?
d. What helped the most?
e. Are there particular challenges you faced as you handle your symptoms? How
could these challenges be addressed?
6. Support, Training and Education
a. What are your hopes and expectations at this time?
b. How do you deal with difficult feelings (like sadness or anger) when they
surface?
c. Is there any support that could be offered to patients like you that would be
helpful?
d. Is there any kind of support, training and education that could help those taking
care of you?
B. FAMILY
Target participants
• Parents

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• Grandparents
• Siblings- brother, sister, foster brother/sister
• Aunts, uncles, cousins
• Neighbors
Priority will be to interview those family members who were close to the patient and had spent
time with the patient (also to interview family members of patients who are deceased).
Questions
1. Knowledge and understanding of, and experience with, EOL (EOL) care patients
a. Can you tell us the story of your family member’s illness? What is their health situation
now? When were they diagnosed? Who cared for them during the different phases of
their illness? Where did they receive treatment?
b. Where do you think you would want to die if YOU were ill?
c. What is most important for YOUR family when providing care?
d. Are there specific things about the Inuit traditions and culture that Quallanut health
professionals should know in order to provide best possible care?
2. Decision making and information sharing during EOL care
a. Tell us about your family’s experience getting information and making decisions for
your loved one?
b. How was the family involved in the decision for their loved one to return home?
c. Who was involved?
d. How/where/when did this happen?
e. Were you satisfied with all the information you received? Did you contact anyone else
for help or information? How can this process be made better for Inuit families?
f. What were the main problems you faced as you looked for information, discussed and
planned for EOL care for your loved one?
3. Description of EOL services for patients in/from Nunavik (This section will be
read/administered together with section 4 below, which addresses home care).
a. What services did you receive while caring for your loved one?
b. Who was/is involved in caring for your loved one?
c. Which service providers have/did you interact with during this time?
4. Home care for patients at their EOL in Nunavik
a. Tell us about your experience caring for your loved one at home (E.g., Activities,
tasks.)
b. How do you feel/think about homecare?
c. Who was/is involved in caring for your loved one at home? (e.g., Service providers,
community members.)
d. How much time per day did you spend caring for your loved one?

103
e. What tasks did you not feel comfortable doing/didn’t like doing (i.e. washing, giving
medication)? Why did you not feel comfortable? Who do you think should be taking
care of these kinds of tasks?
f. What were the main problems and challenges caring for your loved one at home? What
were the rewards?
g. Were you satisfied with the services provided?
5. Symptom management
a. Tell us about the illness and the symptoms that your loved one experienced.
b. What symptoms were most distressing for you to see?
c. How were your loved one’s symptoms taken care of?
d. What helped the most?
e. Are there any challenges that Inuit patients’ and their families experience with taking
care of a patient’s symptoms? How can these challenges be addressed, if at all?
6. Support, Training and Education
a. What are/were your hopes and expectations for yourselves and loved ones during this
experience? Did they change?
b. What kind of support, education and training would be most helpful to yourself, your
family or your loved one at this time?

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C. COMMUNITY MEMBER (Elder, minister, key informant)
Target participants
• Elders
• Youth leaders
• Women’s groups; men’s groups
• Community groups, church groups or volunteers supporting patients at their EOL;
• Ministers, church leaders
Questions
1. Knowledge and understanding of, and experience with, EOL (EOL) care for patients
a. What are your thoughts about terminal illnesses (i.e. illnesses that kill people, like
cancer)? Do Inuit have any particular beliefs about terminal illnesses? Please tell us
about death and dying from an Inuit perspective.
b. The purpose of EOL care is to keep the patient comfortable and pain free when it is
clear they are dying. Doctors and nurses do not try to stop the patient from dying at this
stage. What do you think of this?
c. Tell us of your experience with, or observations about EOL care in your community.
d. Where do you think Inuit patients should be at this time – at home? In the health
center? Down south?
e. What are the priorities for dying patients and their families at this time?
2. Decision making and information sharing during EOL care
a. What are the important decisions that patients and families need to make at EOL? How
should decisions about EOL care be made?
b. What kind of information do patients and family members need? With whom should it
be discussed? Patient? Family? Who else?
c. Are there any special considerations for Inuit patients and their families as they discuss
and make decisions for EOL care?
d. How could patients and families be better supported in decision making?
3. Description of EOL services for patients in/from Nunavik (This section will be
read/administered together with section 4 below, which addresses home care).
a. What do you think is the right way for a community member to be taken care of at the
EOL in your community?
b. Who is involved in providing EOL care in the community? What are their roles and
responsibilities? What is missing in the current care being provided? What could make
it difficult for a person to receive EOL care in the community?
4. Home care for patients at their EOL in Nunavik

105
a. Inuit choose to die at home where they can be close their families and friends. Is this
true? Tell us what you know about home care for dying people in your community.
b. Who is involved in providing home care in the community?
c. What are their roles and responsibilities? What could interfere with a person receiving
home care at the EOL?
d. If you were terminally ill, where do you think you would want to die?
5. Symptom management
a. What do people in your community believe and say about patients at the EOL and
those caring for them at home?
b. What do people believe about pain and the use of drugs such as morphine in the Inuit
community?
c. Describe Inuit beliefs or customs that influence a person’s wellbeing at the end of their
life.
6. Support, Training and Education
a. What kind of help should be available and given to an Inuit patient and/or their family
at the end of their life?
b. Many people see dying as a spiritual experience. How can the medical staff and other
professionals involved be helpful with this?
D. COMMUNITY SERVICE PROVIDERS (Care worker, interpreter, spiritual
advisor)
Target participants
• Community care worker: hired to support patient at home
• Community care workers: working with and supporting nurses and social workers
• Interpreter
• Spiritual Advisor
• Employees: Staff or community members who are hired to support professionals or whose
job is to provide some kind of support to patients and families at EOL.
Questions
1. Knowledge and understanding of, and experience with, EOL (EOL) care for patients
a. Tell us what you know about EOL care in Nunavik.
b. Please tell us about death and dying from an Inuit perspective.
c. How have you participated in EOL care for patients in your community? What
currently works well?
d. What are your goals with EOL care for community members?
e. What are the most important things for an Inuit patient and families during this time?

106
2. Decision making and information sharing during EOL care
a. Tell us about your experience/role in sharing information, discussing with health
professionals and making decisions with patients and families in an EOL situation.
What are the main issues and challenges facing the patient and family in decision
making?
b. Are there any special considerations for Inuit patients and their families as they make
decisions for EOL care?
c. What are your main problems as you assist patients and their families discuss EOL
care?
d. How could you be better supported as you discuss with families?
3. Description of EOL services for patients in/from Nunavik (This section will be
read/administered together with section 4 below, which addresses home care).
a. How did/do you participate in caring for patients at their EOL?
b. Who is involved in caring for people who are dying in the community? What are their
roles? What is missing in the current care being provided? What makes it more
difficult to provide care for those who are dying in the community?
4. Home care for patients at their EOL in Nunavik
a. How did/do you participate in home care for patients at their EOL?
b. What are your responsibilities?
c. How much time do you spend providing care for each patient? (Daily/weekly)
d. Did you work with other people when you were providing home care?
e. If so, what were their roles and responsibilities?
f. In your opinion, what is currently working well? What could be improved?
g. What are your main challenges as you care for patients?
5. Symptom management
a. Describe your participation in providing symptom relief, especially pain relief, to
patients in an EOL situation. What works well?
b. What do Inuit think about pain medication – such as morphine?
c. What are the challenges Inuit patients and their families’ face with symptom and pain
control? How can they be addressed?
6. Support, Training and Education
a. What were the patients’ and their families’ hopes and expectations at this time? Did
you help/assist with their hopes and expectations? How?
b. Have you received any special EOL training or education concerning that would help
you care for patients?

107
c. What kind of training/education or support would be most helpful to you or to others
that you work with?
E. HEALTH SERVICE PROVIDER (Nurse, physician, social worker,
counselor)
Target participants
• Nurse in communities.
• Nurse in the Health Centers in Nunavik.
• Community physician.
• Urban link- oncologist or physician in urban Centre supporting Nunavik Centre or team.
Liaison nurses for patients from Nunavik. Nurses from MUHC involved in providing pall
care to patients from Nunavik (Pall care consult team nurse).
• Social workers & community care workers in Nunavik, hospital administrators and public
health officials.
Questions
1. Knowledge and understanding of, and experience with, EOL (EOL) care for patients
a. Tell us what you know about terminal illness in your community.
b. Who receives EOL care in the community?
c. Where is it/can it be offered?
d. How is it put into place?
e. Describe to us your most recent experience providing EOL care for community
members.
f. What are the goals of EOL care in Nunavik?
g. What are the main challenges and issues in providing care to Inuit patients? What are
the successes?
h. What are the priorities for Inuit patients and their families at this time?
2. Decision making and information sharing during EOL care
a. How are discussions about EOL care initiated?
b. How are decisions and plans made with patients & their families? Who participates in
discussions and planning?
c. Describe any protocols, practice, systems or tools that guide/facilitate discussions.
d. How might Inuit cases differ from other cases you have worked with?
e. Are there any special considerations or accommodations for Inuit patients & families
during the planning and decision making process?
f. What are the main problems for health providers as they plan for EOL care with
patients and their families?
g. How could health providers be better supported as they discuss with families?
3. Description of EOL services for patients in/from Nunavik (This section will be
read/administered together with section 4 below, which addresses home care).

108
a. Describe the services for EOL care that are provided in your community?
b. Who are the service providers and healthcare professionals involved in providing care?
What are their roles and responsibilities?
c. Are there any community members and groups involved? What is missing in the
current care being provided?
4. Home care for patients at their EOL in Nunavik
a. How is home care planned and organized? Describe the provisions for services
associated with home care in your community.
b. Who are the service providers and healthcare professionals involved in providing
homecare? What are their roles and responsibilities?
c. Are there any community members and groups involved in providing care?
d. What are the particular challenges in providing home care to Inuit patients? What are
the benefits of homecare? In your opinion, what is currently working well? What could
be improved?
5. Symptom management
a. Describe any standard protocols in use in your community for symptom management
(pain, anxiety, respiratory distress, constipation).
b. Tell us about your experience managing patients’ symptoms.
c. Are there certain medications (e.g,. morphine) that have particular cultural
significance?
d. What works well?
e. Describe particularly challenging situations related to symptom management you
encountered while providing EOL care in your community.
f. How were these situations resolved? Could they have been prevented? What are the
more common issues in symptom management in your community?
6. Support, Training and Education
a. Have any of the health providers and service providers in your community received
specialized training/education in palliative care?
b. If a healthcare provider or service provider requires advice or support to care for a
patient, where would they seek it?
c. What kind of training or support would be most helpful to the professionals involved in
providing EOL care?
F. INTERVIEW GUIDE FOR HEALTH CARE PROFESSIONALS: Bill 52
in Nunavik
HCP#knowledge#

109
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\TQaN]]!`ZNTN!_QaUQT]!\TQMW_N!dSLXWRPWOc!\LUWNOU]!`WUZ!L!\TN]aTW\UWQO!RQT!medication that
will cause them to die quickly in order to stop suffering.
'O!eSTW]_WaUWQO]!]SaZ!L]!%TNcQO!LO_!BL]ZWOcUQO!`ZNTN!VN_WaLXXP!L]]W]UN_!_PWOc!W]!XNcLXK!
\LUWNOU]!]NNfWOc!UQ!NO_!UZNWT!XWMN]!]UWXX!ONN_!UQ!ULfN!UZN!VN_WaLUWQO!UZNV]NXMN]##
!
L# 'R!]QK!ZLMN!LOP!RQTVLX!QT!WORQTVLX!VNNUWOc]!QT!_W]aS]]WQO]!LbQSU!UZN!
WV\XNVNOULUWQO!QR!UZN!AWXX!ZL\\NON_!PNU!WO!ESSeeSLd!UZLU!PQS!LTN!L`LTN!QRC!!
b# BZLU!ZL]!UZN!cNONTLX!aQO]NO]S]!bNNO!WO!UZN]N!_W]aS]]WQO]C!
a# BZLU!LTN!]QVN!QR!UZN!bTQL_NT!]NOUWVNOU]>aQOaNTO]!TNXLUWOc!UQ!AWXX!;,!UZLU!
PQS!ZLMN!ZNLT_!LVQOc!ZNLXUZ!aLTN!\TQRN]]WQOLX]K!WR!LOPC!!
!
3. 5Q!PQS!]NN!L!ONN_!RQT!UZN!WV\XNVNOULUWQO!QR!AWXX!;,!LaTQ]]!)SOLMWfC!
!
4. BZLU!LTN!PQST!\NT]QOLX!RNNXWOc]!QO!\LTUWaW\LUWOc!WO!L!VN_WaLXXP!L]]W]UN_!_NLUZC!
*ZQSX_!VN_WaLX!\TQRN]]WQOLX]!bN!QbXWcLUN_!UQ!\TQMW_N!VN_WaLXXP!L]]W]UN_!_NLUZC!

110
Perception#of#Community#Attitudes##
5. 7LMN!aQVVSOWUP!XNL_NT]!bNNO!aQO]SXUN_!QO!UZN!\Q]]WbXN!WV\XNVNOULUWQO!QR!AWXX!;,!
WO!)SOLMWfC!!
!
6. 'R!OQUK!ZQ`!_Q!PQS!UZWOf!UZNP!VWcZU!TN]\QO_C!!
!
7. 3TN!UZNTN!LOP!]\NaWLX!\TQUQaQX]!QT!\NTVW]]WQO]!UZLU!VWcZU!bN!TNdSWTN_!bNRQTN!AWXX!;,!
W]!WV\XNVNOUN_!WO!'OSWU!QT!3bQTWcWOLX!aQVVSOWUWN]C!
!
Implementation#in#the#Context#of#Nunavik#
8. AWXX!;,!TNdSWTN]!UZLU!LXX!WO]UWUSUWQO]!QRRNT!.%-!aLTNK!WOaXS_N!L!aXWOWaLX!\TQcTLV!RQT!
.%-!aLTNK!LO_!L_Q\U!L!\QXWaP!`WUZ!TN]\NaU!UQ!NO_JQR!JXWRN!aLTN!Y'''H=J$F[#!!5Q!PQS!UZWOf!
UZN]N!TNcSXLUWQO]!aLO!bN!L_ZNTN_!UQ!WO!)SOLMWfC!!
L# 'R!OQUK!`ZP!OQUC!
!
9. 8ZN!bWXX!LX]Q!LXXQ`]!UZLU!.%-!aLTN!bN!QRRNTN_!WO!L!ZNLXUZ!aLTN!WO]UWUSUWQO]!QT!LU!ZQVN!
Y''H;[#!BZWaZ!QR!UZN!U`Q!Q\UWQO]!LTN!VQTN!RNL]WbXN!WO!PQST!Q\WOWQOC!
!
10. 3TN!PQS!L`LTN!QR!UZN!_W]UWOaUWQO!UZLU!AWXX!;,!_TL`]!bNU`NNO!UNTVWOLX!\LXXWLUWMN!
]N_LUWQO!LO_!VN_WaLXXP!L]]W]UN_!_NLUZC!!
L# 'R!]QK!_Q!PQS!UZWOf!NWUZNT!QR!UZN]N!L\\TQLaZN]!W]!VQTN!L\\TQ\TWLUN!QT!RNL]WbXN!
cWMNO!UZN!XQaLX!aQOUN^U!QR!)SOLMWfC!
!
11. :O_NT!UZN!TNcSXLUWQO]!]UW\SXLUN_!bP!AWXX!;,K!UZN!UTNLUWOc!_QaUQTK!\XS]!L!]NaQO_!_QaUQTK!
VS]U!LcTNN!UZLU!635!W]!UZN!bN]U!aQST]N!RQT!UZN!\LUWNOU!YRQXXQ`WOc!UZN!\LUWNOUG]!aXNLT!
LO_!TN\NLUN_!N^\TN]]WQO!QR!UZNWT!_N]WTN!UQ!_WN[#!(WMNO!UZW]!aQO]UTLWOUK!W]!VN_WaLX!LW_!
UQ!_WN!RNL]WbXN!WO!)SOLMWfG]!aQVVSOWUWN]C!
!
12. AWXX!;,!]UW\SXLUN]!UZLU!QOXP!L!\LUWNOU!`ZQ!VNNU]!UZN!RQXXQ`WOc!aTWUNTWL!VLP!QbULWO!
VN_WaLX!LW_!WO!_PWOcH!!
!
i. Be%of%full%age,%be%capable%of%giving%consent%to%the%care%and%be%an%insured%
person%within%the%meaning%of%the%Health%Insurance%Act%(Chapter%A^29).%%
ii. Suffer%from%an%advanced%state%of%irreversible%decline%in%capability;%and%%
iii. Suffer%from%constant%and%unbearable%physical%or%psychological%pain%
which%cannot%be%relieved%in%a%manner%the%person%finds%tolerable%(IV:26).%%
(WMNO!ZWcZ!TLUN]!QR!VNOULX!WXXON]]K!_W]UTN]]K!LO_!]SWaW_N!LVQOc!'OSWU!TN]W_WOc!WO!)SOLMWfK!
`QSX_!PQS!aQO]W_NT!\TQMW_WOc!635!UQ!L!\LUWNOU!`ZQ!TN\QTUN_!SObNLTLbXN!\]PaZQXQcWaLX!
\LWOK!bSU!`ZQ!`L]!QUZNT`W]N!ZNLXUZPC!!
!
13. BZLU!LTN!]QVN!QR!UZN!QUZNT!bLTTWNT]!PQS!ZLMN!W_NOUWRWN_!UQ!UZN!WV\XNVNOULUWQO!QR!
AWXX!;,!ZNTNC!'ORTL]UTSaUSTLX!bLTTWNT]C!*QaWLX!QT!NVQUWQOLX!bLTTWNT]C!
!
14. BZLU!LTN!UZN!VNUZQ_]!UZLU!VWcZU!bN!S]N_!UQ!\NTRQTV!635!ZNTNK!WR!WU!`NTN!RNL]WbXNC!!
!

111
15. ']!UZNTN!L!fWO_!QR!TNMW]N_!\TQUQaQX!PQS!`QSX_!LOUWaW\LUN!RQXXQ`WOc!UQ!NO]STN!UZLU!
635!`L]!LMLWXLbXN!UQ!\LUWNOU]!WO!)SOLMWfC!
!
L# 'R!]QK!`ZLU!fWO_!QR!\NTVW]]WQO]!`QSX_!bN!TNdSWTN_C!
! !

112
16. 2 Appendix B: Consent Forms: English, French, Inuktitut
#
June 2014
EOL care for the Inuit Patients in Nunavik, Quebec
STATEMENT OF CONSENT
You are being invited to be a research participant. This research is designed to look at the EOL
care in Nunavik. We are seeking your participation in this interview as a community
representative, as a patient or his/her family member, as a health service provider involved in
the delivery of EOL care. You have the right to know about the purpose and procedures that are
to be used in this research study.
Before you agree to take part in this study, it is important that you read the information in this
consent form. If you prefer, we will read it out loud for you. You should ask as many questions
as you need to in order to understand what you will be asked to do. You do not have to take part
in this study if you do not want to.
Purpose of study:
The aim of our survey is to better understand the EOL services offered in Nunavik, and to
identify ways to improve the quality of life for patients and their family members. We are
interviewing community representatives, patients and their family members, healthcare
professionals and associated staff who are involved in giving these services. What we want to
discuss include decision making; homecare; communication; education; hopes/expectations.
Also, we would like to get a clear outline of the human resources and equipment required to
provide these services. We welcome input on how EOL care is used; whether or not the services
are accessible and comfortable for patients and the family members; do we need to offer
different care strategies, and whether EOL services need improvement, and if so, how to improve
the delivery and utilization of EOL care. Not all of these issues correspond to your own situation
and we will adjust our questions accordingly.
Procedures:
If you agree to participate we will conduct a face-to-face interview and your verbal answers to
our questions will be recorded and later transcribed and analyzed. The length of the interview
will depend on the information you provide and may take up anywhere from 30 to 60 minutes.
Voluntary participation/withdrawal:

113
Your participation in this study is voluntary. You may choose to participate now and decide to
stop your participation at any time. Your decision to participate or not will have no impact on
your care now or later.
If you withdraw from this study, any information collected up to the point of withdrawal for the
purpose of this research may still be used in order to protect the scientific integrity of the study.
Costs and compensation:
You will not be compensated for your participation in this study. There will be no costs to you
for participating in this study.
Confidentiality:
While you take part in this research study, the researcher in charge and study staff will collect and
store personal identifiable information about you in a file for the purpose of the research study. Only
information necessary for the research study will be collected.
All the information collected about you during the study will remain confidential within the limits of
the Law. To protect your identity, your name and identifying information will be replaced with a
code (numbers and or letters); the link between the code and your identity will be held by the
researcher in charge of the study. No information that discloses your identity will be allowed to
leave the institution.
Your study information will be kept for 10 years by the researcher in charge of the study.
The study information may also be used to help in the development of future studies.
The study information could be printed/published in medical journals or shared with other people at
scientific meetings, but your identity will never be revealed.
Investigator Compensation
This survey is conducted on behalf of the Nunavik Regional Board of Health and Social Services
and is funded by the Fond de recherche du Québec. The funds are being deposited into a
research and development account.
Contact information or questions:
If you have any questions about the study you can communicate with the researcher in charge of
the study Dr. Paul Brassard at 514-340-7563.
For any questions concerning your rights as a person taking part in this study or if you have
comments or wish to file a complaint you can communicate with Dr. Nathalie Boulanger, chief of
Medicine in Nunavik at (819) 964-2222.

114
STATEMENT OF CONSENT
EOL care for the Inuit Patients in Nunavik, Quebec
I have read/understood the above information and my questions were answered to my
satisfaction. A copy of this signed consent form will be given to me. My participation is voluntary
and I can withdraw from the study at any time without giving reasons, without it affecting my
care now or later. I do not give up any of my legal rights by signing this consent form. I agree to
participate in this study.
Signature:________________________________________________Date:_________________
Name of Participant: _______________________________________________
Consent form administered and explained in person by:
Signature:________________________________________________Date:_________________
Name of Investigator: __________________________________________________
Research Number ____________

115
#
Juin 2014
CONSENTEMENT
Vous êtes invité(e) à participer à une recherche qui porte sur les soins de fin de vie au Nunavik.
Nous sollicitons votre participation à un entretien car vous êtes un représentant communautaire,
un patient ou un membre de sa famille ou un professionnel de la santé chargé de prodiguer des
soins de fin de vie. Vous avez le droit de connaître l’objectif et les procédures applicables à la
présente recherche.
Avant d’accepter de participer à cette étude, il est important que vous lisiez les informations qui
figurent dans le présent formulaire de consentement. Si vous le préférez, nous pouvons vous le
lire à haute voix. Vous devez poser toutes les questions qui vous viennent à l’esprit afin de bien
comprendre ce que l’on attend de vous. Vous n’êtes pas obligé(e) de participer à cette étude si
vous ne le souhaitez pas.
Objectif de l’étude :
L’objectif de notre étude est de mieux comprendre les services et soins de fin de vie offerts au
Nunavik et d’identifier les moyens qu’il conviendrait de mettre en œuvre pour améliorer la
qualité de vie des patients et des membres de leurs familles. Nous souhaitons interroger des
représentants communautaires, des patients et des membres de leurs familles, des professionnels
de santé et des membres du personnel médical participant à la prestation de ces services. Nous
souhaitons en particulier les interroger sur la prise de décisions, les soins prodigués à domicile,
la communication, l’éducation et les espoirs/attentes. Nous aimerions également nous faire une
idée plus précise des ressources humaines et équipements nécessaires pour offrir ce type de
services. Nous souhaitons plus particulièrement recueillir des informations sur la manière dont
les soins de fin de vie sont utilisés et chercher à savoir s’ils sont accessibles et apportent du
confort aux patients et aux membres de leurs familles, si différentes stratégies de soins sont
nécessaires, si les services de fin de vie doivent être améliorés et, le cas échéant, déterminer les
moyens qu’il convient de mettre en œuvre pour améliorer la prestation et l’utilisation des soins
de fin de vie. Toutes ces questions ne s’appliquent pas à votre situation personnelle et nous les
ajusterons en conséquence.
Procédures :

116
Si vous acceptez de participer, nous mènerons des entretiens en tête-à-tête et les réponses orales
que vous apporterez à nos questions seront enregistrées puis transcrites et analysées. La durée
de l’entretien dépendra des informations que vous fournirez et pourra être comprise entre 30 et
60 minutes.
Participation volontaire/retrait :
Votre participation à cette étude est volontaire. Vous pouvez choisir de participer aujourd’hui et
décider d’interrompre votre participation à tout moment. Votre décision de participer ou non
n’aura aucun impact sur vos soins actuels ou les soins qui vous seront prodigués plus tard.
Si vous vous retirez de cette étude, toutes les données recueillies jusqu’au moment de votre
retrait pour les besoins de cette recherche pourront être utilisées de manière à préserver
l’intégrité scientifique de l’étude.
Coûts et indemnisation :
Vous ne serez pas indemnisé(e) pour votre participation à cette étude. Votre participation à cette
étude ne vous coûtera rien.
Confidentialité :
Dans le cadre de votre participation à cette étude de recherche, le chercheur responsable et le
personnel de l’étude recueilleront et conserveront dans un dossier des données personnelles
identifiables à votre sujet pour les besoins de cette étude. Seules les informations nécessaires à cette
étude seront recueillies.
Toutes les informations recueillies à votre sujet pendant l’étude resteront confidentielles, dans les
limites prévues par la loi. Pour protéger votre identité, votre nom et les données permettant de vous
identifier seront remplacés par un code (composé de chiffres et (ou) de lettres); le lien entre le code
et votre identité sera conservé par le chercheur responsable de l’étude. Aucune donnée permettant de
divulguer votre identité ne pourra quitter cet établissement.
Les données vous concernant relatives à cette étude seront conservées pendant 10 ans par le
chercheur responsable de l’étude.
Les données de l’étude pourront également être utilisées pour l’élaboration de futures études.
Les données de l’étude pourront être imprimées/publiées dans des revues médicales ou
communiquées à d’autres personnes dans le cadre de congrès scientifiques, mais votre identité ne
sera jamais divulguée.
Indemnisation du chercheur
Cette étude est menée au nom de la Régie régionale de la santé et des services sociaux du
Nunavik et financée par le Fonds de recherche du Québec. Les sommes correspondantes sont
déposées dans un compte de recherche et développement.
Coordonnées ou questions :
Si vous avez des questions au sujet de cette étude, vous pouvez vous mettre en rapport avec le
chercheur responsable de l’étude, le Dr Paul Brassard, au 514-340-7563.
Pour toute question concernant vos droits en tant que participant à cette étude ou si vous avez
des remarques ou souhaitiez déposer une plainte, veuillez vous adresser au Dr Nathalie
Boulanger, chef du département de médecine générale au Nunavik, au (819)964-2222.

117
Juin 2014
CONSENTEMENT
J’ai lu/compris les informations présentées ci-dessus et obtenu des réponses satisfaisantes à mes
questions. Un exemplaire du présent formulaire de consentement signé me sera remis. Ma
participation est volontaire et je peux me retirer de l’étude à tout moment sans avoir à me
justifier et sans que cela n’affecte mes soins actuels ou futurs. Je ne renonce à aucun de mes
droits juridiques en signant le présent formulaire de consentement. J’accepte de participer à
cette étude.
Signature : ______________________________________________________
Date :____________________
Nom du participant : _______________________________________________
Ce formulaire de consentement a été présenté et expliqué en personne par :
Signature : ________________________________________________Date
:_____________________
Nom du chercheur : __________________________________________________
Numéro de la recherche ____________

118
ᔫᓂ 2014
ᐃᓅᒍᓐᓀᑐᖃᕐᓂᐸᑦ ᐃᓄᒻᒥᒃ ᐋᓐᓂᐊᕕᓕᐊᕐᓯᒪᔪᒥᒃ ᑲᒪᒍᓯᖅ ᓄᓇᕕᒻᒥ, ᑯᐯᒻᒥ
ᐊᖏᕈᑎᒃ
cspnᕐᓂᒧᑦ ᐃᓚᐅᖁᔭᐅᓯᒪᕗᑎᑦ. ᖃᐅᔨᓴᕐᓂᐊᕋᑦᑕ ᓄᓇᕕᒻᒥ ᐃᓅᒍᓐᓀᓯᒪᔪᑦ ᖃᓄᖅ
ᑲᒪᒋᔭᐅᓲᒍᒻᒪᖔᑕ. ᐊᐱᕐᓱᑕᐅᖃᑕᐅᖁᔭᐅᑦᓱᑎᑦ ᓄᓇᓕᒻᒥᒃ ᑭᒡᒐᑐᕐᓗᑎᑦ, ᐊᑐᕐᑎᐅᒍᕕᑦ
ᐃᓅᒍᓐᓀᑐᕕᓂᕐᒧᓘᓐᓃᑦ ᐃᓚᒋᔭᐅᒍᕕᑦ, ᖃᓄᐃᖕᖏᓯᐊᕐᓂᓕᕆᓂᕐᒥᒃ ᐱᒍᑦᔨᔨᐅᒍᕕᑦ
ᑲᒪᖃᑕᐅᓲᒍᓗᑎᑦ ᐃᓅᒍᓐᓀᑐᕕᓂᐅᔪᖃᕐᐸᑦ. ᐱᒍᓐᓇᐅᑎᖃᕐᑐᑎᑦ ᖃᐅᔨᒪᒋᐊᖃᕐᓂᒥᒃ ᐱᑦᔪᑎᐅᔪᓂᒃ
ᖃᓄᐃᓘᕈᓯᕐᓂᓗ ᐊᑐᕐᑕᐅᓛᕐᑐᓂᒃ ᑕᒪᓐᓇ ᖃᐅᔨᓴᕐᑕᐅᑎᓪᓗᒍ.
cspnᕐᓂᒧᑦ ᐃᓚᐅᖃᑕᐅᒍᒪᐅᑎᒥᒃ ᐊᖏᕈᑎᖃᓚᐅᕐᓇᒃ, ᐊᑐᐊᕐᓯᖄᕆᐊᖃᕐᑐᑎᑦ ᑐᑭᓯᒪᔭᐅᒋᐊᓕᓐᓂᒃ
ᐊᖏᕈᑎᐅᑉ ᐅᖃᐅᓯᕐᑕᖏᓐᓂᒃ. ᒍᒪᒍᕕᑦ, ᐊᑐᐊᕐᓯᕕᒋᕐᖄᕈᓐᓇᑕᒋᑦ ᑖᒃᑯᓂᖓ. ᐊᐱᕐᓲᑎᑦᓴᓕᒫᑦᓯᐊᓃᕕᑦ
ᐊᐱᕐᓲᑎᖃᕈᓐᓇᑐᑎᑦ ᑐᑭᓯᒪᑦᓯᐊᓂᐊᕋᕕᑦ ᓱᖁᔭᐅᓂᕐᓃᕕᑦ. ᖃᐅᔨᓴᕐᑐᓄᑦ ᐃᓚᐅᒍᒪᖕᖏᑯᕕᑦ
ᐃᓚᐅᖕᖏᑑᒍᓐᓇᑐᑎᑦ.
ᖃᐅᔨᕐᓂᐅᑉ ᐱᑦᔪᑎᖓ:
ᖃᐅᔨᓴᕐᓂᕗᑦ ᐱᑦᔪᑎᖃᕐᑐᖅ ᑐᑭᓯᒋᐊᓪᓚᕈᒪᒐᑦᑕ ᐃᓅᒍᓐᓀᑐᖃᑐᐊᕐᒪᑦ ᐱᒍᑦᔨᐅᑎᐅᓲᓂᒃ ᓄᓇᕕᒻᒥ,
ᓇᓗᓀᕐᓯᒍᒪᑦᓱᑕᓗ ᐋᓐᓂᐊᕕᓕᐊᕐᓯᒪᔪᑦ ᐃᓚᖏᓪᓗ ᐃᓅᓯᒃᑯᑦ ᖃᓄᖅ
ᐃᓱᕐᕆᓯᐊᕆᐊᓪᓚᑎᒍᓐᓇᒪᖔᑦᑎᒋᑦ. ᐊᐱᕐᓱᖃᑦᑕᓚᖓᔪᒍᑦ ᓄᓇᓕᒻᒥᐅᓂᒃ, ᐋᓐᓂᐊᕕᓕᐊᕐᓯᒪᔪᓂᒃ
ᐃᓚᖏᓐᓂᓗ ᖃᓄᐃᖕᖏᓯᐊᕐᓂᓕᕆᕕᓐᓂ ᐱᓇᓱᑦᑎᓂᒃ ᐱᓇᓱᖃᑎᖏᓐᓂᓗ ᑕᒪᑐᒥᖓ
ᐱᒍᑦᔨᐅᑎᖃᓲᓂᒃ. ᐅᖃᐅᓯᖃᕈᒪᔪᒍᑦ ᑐᑭᑖᕋᓱᐊᕐᓂᐅᓲᒥᒃ; ᐊᓇᕐᕋᓯᒪᔪᓂᒃ ᑲᒪᓂᖅ;
ᑐᓴᐅᒪᖃᑦᑕᐅᑎᓂᕐᒥᒃ; ᐃᓕᓐᓂᐊᓂᕐᒥᒃ; ᓂᕆᐅᒋᔭᐅᔪᓂᓪᓗ. ᑐᑭᓯᑦᓯᐊᕈᒪᑦᓱᑕᓗ ᖃᓄᐃᓪᓗᐊᑐᓂᒃ
ᐱᓇᓱᑦᑎᓭᓪᓘᒪᖔᑦᑕ ᖃᓄᐃᑦᑐᓂᓪᓗ ᐱᐅᒃᑯᑎᑦᓴᖃᕆᐊᖃᕐᒪᖔᑦᑕ ᑕᒪᑐᒥᖓ ᐱᒍᑦᔨᐅᑎᑦᓴᑎᓐᓂᒃ.
ᑐᓴᕐᑎᑕᐅᒍᒪᔪᒍᑦ ᖃᓄᖅ ᐃᓱᒪᒋᔭᖃᕐᒪᖔᑦᓯ ᐃᓅᒍᓐᓀᓯᒪᔪᑦ ᖃᒪᒋᔭᐅᓂᕆᓲᖏᓐᓂᒃ;
ᐱᒍᑦᔨᒍᑕᐅᓲᒍᒻᒪᖔᑦ ᐃᓱᕐᕆᒋᔭᐅᑦᓯᐊᒪᖔᑦ ᐊᑐᕐᑎᓄᑦ ᐃᓚᖏᓐᓄᓗ; ᐊᑦᔨᒌᖕᖏᑐᓂᒃ ᐱᒍᑦᔨᐅᑎᓂᒃ
ᒪᓂᒪᑎᑦᓯᔪᑦᓴᐅᕕᑕ, ᐃᓅᒍᓐᓀᓯᒪᔪᓂᒃ ᑲᒪᒍᓯᐅᓲᑦ ᐱᐅᓯᒋᐊᕐᑕᐅᒋᐊᖃᕐᐸᑦ, ᒋᐊᖃᕐᐸᑕ, ᖃᓄᖅ
ᐱᐅᓯᒋᐊᕐᑕᐅᒋᐊᖃᕐᐸᑦ ᐱᒍᑦᔨᐅᑏᑦ ᐊᑐᕐᑕᐅᓂᕆᓲᖓᓗ ᐃᓅᒍᓐᓀᑐᖃᕐᓂᐸᑦ ᑲᒪᒍᓰᑦ. ᑕᒪᒃᑯᐊᓕᒫᑦ
ᐃᓕᓐᓅᓕᖓᖕᖏᑐᐃᓐᓇᕆᐊᓖᑦ, ᐊᐱᕐᓲᑎᕗᓪᓗ ᐊᓯᑦᔨᒋᐊᕈᓐᓇᒥᔭᕗᑦ ᒋᐊᖃᕈᑦᑎᒋᑦ. .
ᖃᓄᐃᓘᕈᓰᑦ::
ᐃᓚᐅᒍᒪᓐᓂᕈᕕᑦ ᑲᑎᓗᑕ ᐊᐱᕐᓱᑕᐅᒍᓐᓇᑐᑎᑦ ᓂᐱᓕᐅᕐᑕᐅᒐᔭᕋᕕᑦ ᓯᑯᑦᓴᔭᕐᒨᑕᐅᓛᕐᑐᓂᒃ
ᕿᒥᕐᕈᔭᑦᓴᐅᓗᑎᒃ. 30-ᒥᓂᑦᓂᒃ 60-ᒥᓂᑦᓂᓘᓐᓃᑦ ᓯᕕᑐᓂᖃᕈᓐᓇᑐᖅ ᐊᐱᕐᓱᑕᐅᓂᖅ ᑭᐅᒍᑎᑉᐱᑦ
ᑕᑭᔫᓂᖏᑦ ᒪᓕᓪᓗᒋ.
ᐃᓚᐅᒍᒪᓂᖅ ᐃᓱᒣᓐᓇᕿᐅᑎᒋᓗᒍ / ᐃᓚᐅᒍᒪᒍᓐᓀᓂᕐᓘᓃᑦ:

119
ᐃᓚᐅᒍᒪᓃᑦ ᒪᓕᓪᓗᒍ ᖃᐅᔨᓴᕐᑕᐅᖃᑕᐅᒍᓐᓇᑐᑎᑦ. ᑕᒐᑕᒐ ᐃᓚᐅᒍᓐᓇᑐᑎᑦ ᖃᖓᑐᐃᓐᓇᓯᐊᖅ
ᐃᓚᐅᒍᒪᒍᓐᓀᕈᓐᓇᓗᑎᑦ. ᐃᓚᐅᒍᒪᓯᒪᓃᑦ ᐃᓚᐅᒍᒪᒍᓐᓀᓯᒪᓃᓪᓘᓃᑦ ᓱᕐᕃᓂᖃᓛᖕᖏᑐᖅ ᖃᓄᖅ
ᑲᒪᒋᔭᐅᓂᕆᓲᕐᓂᒃ ᑕᒐᑕᒐ ᓯᕗᓂᑦᑎᓂᓪᓘᓃᑦ.
ᐃᓚᐅᒍᒪᒍᓐᓀᓂᕈᕕᑦ ᖃᐅᔨᓴᕐᓂᒧᑦ; ᐃᓚᐅᒍᒪᒍᓐᓀᓃᑦ ᑎᑭᓪᓗᒍ ᑭᐅᒍᑎᕕᓂᑎᑦ ᐊᑐᕐᑕᐅᔪᑦᓴᐅᓛᕐᑐᑦ
ᖃᐅᔨᓴᐅᑎᓅᕐᑕᐅᒋᐊᖃᕐᒪᑕ.
ᐊᑮᑦ ᐅᑎᕐᑕᐅᓂᕐᓗ:
xroᕐᑕᐅᓛᖕᖏᑐᑎᑦ ᖃᐅᔨᓴᕐᓂᒧᑦ ᐃᓚᐅᓂᕐᓄᑦ. ᐊᑭᓖᒋᐊᖃᕐᓇᓗ ᐃᓚᐅᓂᕐᓄᑦ ᖃᐅᔨᓴᕐᓂᒧᑦ.
ᑭᓇᒃᑯᑐᐃᓐᓇᓂᒃ ᖃᐅᔨᑎᑦᓯᒍᑕᐅᒋᐊᖃᖕᖏᓂᖏᑦ:
ᖃᐅᔨᓴᕐᑕᐅᖃᑕᐅᓗᑎᑦ, ᖃᐅᔨᓴᕐᑎ ᐱᓇᓱᖃᑕᐅᔪᐃᓪᓗ ᑲᑎᕐᓱᐃᓛᕐᑐᑦ ᓇᓗᓀᒃᑯᑕᕆᒋᐊᓕᒥᓂᒃ
ᐃᓕᓐᓅᓕᖓᔪᓂᒃ ᑕᒪᓐᓇ ᖃᐅᔨᓴᕐᓂᖅ ᐱᓪᓗᒍ. ᖃᐅᔨᓴᕐᑐᓄᑦ ᑐᑭᓯᒪᐅᑎᑦᓭᑦ ᑲᑎᕐᓱᑕᑑᓛᕐᑐᑦ.
ᑭᐅᒍᑎᕕᓂᓕᒫᑎᑦ ᑭᓇᒃᑯᑐᐃᓐᓇᓂᒃ ᖃᐅᔨᑎᑦᓯᒍᑕᐅᓛᖕᖏᑐᑦ ᐱᖁᔦᑦ ᒪᓕᓪᓗᒋᑦ. ᑭᓇᐅᓃᑦ, ᐊᑏᑦ
ᓇᓗᓀᒃᑯᑕᕆᒋᐊᓕᑎᓪᓗ ᓴᐳᑦᔨᓯᒪᑦᓯᐊᕈᒪᑦᓱᒋᑦ, ᓇᓗᓀᒃᑯᑕᖃᕐᑎᓛᕐᑕᕗᑦ (ᑭᑎᑦᔪᑎᓂᒃ ᐁ, ᐯ, ᑌ-
ᓂᓪᓘᓃᑦ); ᖃᐅᔨᓴᕐᑎᓂᒃ ᐊᑕᐅᑦᓯᑰᕐᑎᓯᔨ ᓇᓗᓀᒃᑯᑕᓂᒃ ᓇᓗᓀᕐᓯᔨᐅᓛᕐᑐᖅ. ᑭᓇᐅᓂᕐᓃᕕᑦ
ᖃᐅᔨᒍᑎᑦᓴᐅᒐᔭᕐᑐᑦ ᐱᓇᓱᕝᕕᑕ ᐊᓯᐊᓅᕐᑕᐅᓛᖕᖏᑐᑦ.
ᐊᕐᕋᒍᓂ ᖁᓕᓐᓂ ᑭᐅᒍᑎᕕᓂᑎᑦ ᐱᐅᓕᐊᕐᑕᐅᓛᕐᑐᑦ ᖃᐅᔨᓴᕐᓂᒥᒃ ᐊᑕᐅᑦᓯᑰᕐᑎᓯᔨᒧᑦ.
ᑭᐅᒍᑎᕕᓂᑎᑦ ᐃᑲᔪᕐᓯᒍᑎᑦᓴᐅᒍᓐᓇᒥᔪᑦ ᖃᐅᔨᓴᕐᓂᐅᕙᓐᓂᐊᑐᓄᑦ.
ᑭᐅᒍᑎᕕᓂᑎᑦ ᐊᑐᐊᕋᑦᓴᖑᕐᑎᑕᐅᒍᓐᓇᑐᑦ ᐋᓐᓂᐊᓯᐅᕐᕖᑦ ᐊᑐᐊᕋᑦᓴᖏᓐᓅᑕᐅᓗᑎᒃ
ᐊᑐᐊᕋᑦᓴᐅᓂᐊᕐᓗᑎᓪᓘᓃᑦ ᖃᐅᔨᓴᕐᓂᒥᒃ ᑲᑎᒪᓂᖃᓕᕐᐸᑦ, ᑭᓯᐊᓂ ᑭᓇᐅᓃᑦ ᓇᓗᓀᕐᑕᐅᓂᐅᔭᖕᖏᑐᖅ.
ᖃᐅᔨᓴᕐᑎᓂᒃ ᐊᑭᓖᒍᑎᑦᓭᑦ
ᖃᐅᔨᓴᕐᑎᓯᓛᕐᑐᑦ ᓄᓇᕕᒻᒥ ᐃᓗᓯᓕᕆᓂᕐᒥᒃ ᑲᑎᒪᔩᑦ ᑮᓇᐅᔭᖃᕐᑎᓯᑎᓪᓗᒋᑦ Fond de recherche
du Québec. ᑮᓇᐅᔦᑦ ᑲᑎᕐᓱᐃᕕᑦᑎᓅᕐᑕᐅᓛᕐᑐᑦ ᖃᐅᔨᓴᕈᑎᑦᓴᓂᒃ.
ᖃᐅᔨᒋᐊᕐᑐᕕᑦᓭᑦ ᐊᐱᕐᓲᑎᑦᓭᓘᓐᓃᑦ:
ᐊᐱᕐᓲᑎᑦᓴᖃᕈᕕᑦ ᖃᐅᔨᓴᕐᓂᒨᓕᖓᔪᓂᒃ ᑐᓴᕆᐊᕐᕕᖃᕈᓐᓇᑐᑎᑦ ᖃᐅᔨᓴᕐᓂᒥᒃ ᐊᑕᐅᑦᓯᑰᕐᑎᓯᔨᒥᒃ
ᐅᖄᓚᕕᒋᓗᒍ Dr. Paul Brassard 514-340-7563.
ᐊᐱᕐᓲᑎᑦᓴᖃᕈᕕᑦ ᐱᒍᓐᓇᐅᑎᑎᑦ ᐱᓪᓗᒋᑦ ᖃᐅᔨᓴᕐᓂᒧᑦ ᐃᓚᐅᓗᑎᑦ ᐅᖃᐅᓯᑦᓴᖃᕈᕕᓪᓘᓃᑦ
ᐅᓐᓂᓘᑎᑦᓴᖃᕈᕕᓪᓘᓃᑦ ᐅᖄᕕᖃᕈᓐᓇᑐᑎᑦ, ᓄᓇᕕᒻᒥ ᐋᓐᓂᐊᓯᐅᕐᓂᓕᕆᔨᒥᒃ Dr. Nathalie
Boulanger (819)964-2222.

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ᐊᖏᕈᑎᒃ
ᐃᓅᒍᓐᓀᑐᖃᕐᓂᐸᑦ ᐃᓄᒻᒥᒃ ᐋᓐᓂᐊᕕᓕᐊᕐᓯᒪᔪᒥᒃ ᑲᒪᒍᓯᖅ ᓄᓇᕕᒻᒥ,
ᑯᐯᒻᒥ
ᑐᑭᓯᕗᖓ ᑐᑭᓯᒪᔭᐅᒋᐊᓕᓐᓂᒃ ᐊᐱᕐᓲᑎᑦᓴᑲᓗ ᑭᐅᔭᐅᑦᓯᐊᓱᑎᒃ. ᑖᒃᑯᐊ ᐊᖏᕈᑏᑦ ᐊᑦᔨᖏᓐᓂᒃ
ᐱᑎᑕᐅᓛᕐᖁᖓ. ᐃᓚᐅᒍᒪᓂᕐᓄᑦ ᐃᓚᐅᓯᒪᔪᖓ ᖃᖓᑐᐃᓐᓇᓯᐊᕐᓗ ᐃᓚᐅᒍᒪᒍᓐᓀᕈᓐᓇᓱᖓ
ᖃᐅᔨᓴᕐᓂᒧᑦ ᐱᑦᔪᑎᑦᓴᖃᖕᖏᑲᓗᐊᕈᒪ, ᑲᒪᒋᔭᐅᒍᑎᒃᑲ ᑲᒪᒋᔭᐅᒍᑎᒋᕙᓐᓂᐊᑕᒃᑲᓘᓐᓃᑦ
ᓱᕐᕋᑕᐅᑎᓐᓇᒋᑦ. ᑖᑦᓱᒥᖓ ᐊᖏᕈᑎᒥᒃ ᐊᑎᓕᐅᕐᕕᖃᕋᓗᐊᕈᒪ ᐱᖁᔭᑎᒍᑦ ᐱᒍᓐᓇᐅᑎᒃᑲ
ᓴᒃᑯᓂᐊᖕᖏᓚᒃᑲ. ᖃᐅᔨᓴᕐᓂᒧᑦ ᐃᓚᐅᓚᖓᓗᖓ ᐊᖏᕐᐳᖓ.
ᐊᑎᕋ:_______________________________________________________
ᐅᓪᓗᖓ:_________________
ᐊᑎᖓ ᐃᓚᐅᔫᑉ: _______________________________________________
ᐊᖏᕈᑎᒃ ᐊᐅᓚᑕᐅᔪᖅ ᑐᑭᓯᑎᑦᓯᒍᑕᐅᑦᓱᓂᓗ ᐃᓚᐅᓚᖓᔪᒥᒃ ᑕᒃᑯᒧᑦ:
ᐊᑎᕋ:_______________________________________________________ᐅᓪᓗᖓ:____________
_____
ᖃᐅᔨᓴᕐᑎᐅᑉ ᐊᑎᖓ: __________________________________________________
ᖃᐅᔨᓴᕈᑎᐅᑉ ᑭᑎᑦᔪᑎᖓ ____________