Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study.

Abstract

To understand key challenges in researching end of life issues and identify ways of overcoming these.
Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer.
An international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland.
Researchers highlighted the difficulty of defining the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome.
The continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.

Full text

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RESEARCH
Key challenges and ways forward in researching the “good
death”:qualitativein-depthinterviewandfocusgroupstudy
Marilyn Kendall, research fellow,1Fiona Harris, research fellow,1Kirsty Boyd, honorary clinical senior
lecturer,1Aziz Sheikh, professor of primary care research and development,1Scott A Murray, St
Columba’s Hospice professor of primary palliative care,1Duncan Brown, consultant in palliative
medicine,2Ian Mallinson, patient representative,1Nora Kearney, professor,3Allison Worth, research
fellow1
ABSTRACT
Objective To understand key challenges in researching
end of life issues and identify ways of overcoming these.
Design Qualitative study involving in-depth interviews
with researchers and focus groups with people affected
by cancer.
Participants An international sample of 32 researchers;
seven patients with experience of cancer; and four carers
in south east Scotland.
Results Researchers highlighted the difficulty of defining
the end of life, overprotective gatekeeping by ethics
committees and clinical staff, the need to factor in high
attritionratesassociatedwithdeteriorationordeath,and
managingtheemotionsofparticipantsandresearchstaff.
Peopleaffectedbycancerandresearcherssuggestedthat
many people nearing the end of life do want to be offered
the chance to participate in research, provided it is
conducted sensitively. Although such research can be
demanding, most researchers believed it to be no more
problematic than many other areas of research and that
the challenges identified can be overcome.
Conclusions The continuing taboos around death and
dyingactasbarrierstothecommissioningandconductof
end of life research. Some people facing death, however,
may want to participate in research and should be
allowed to do so. Ethics committees and clinical staff
must balance understandable concern about non-
maleficencewiththerightofpeoplewithadvancedillness
to participate in research. Despite the inherent
difficulties, end of life research can be conducted with
ethical and methodological rigour. Adequate
psychological support must be provided for participants,
researchers, and transcribers.
INTRODUCTION
When an editorial in the BMJ posed the question,
“What is a good death?”1contributors concluded that
we cannot answer this as we lack the necessary evi-
dence from research, especially from the perspective
of patients and carers.2Achieving a comfortable and
dignified death requires research that supports the
development of end of life care as an evidence based
specialty.13It was in direct response to the BMJ good
death theme issue that Macmillan Cancer Relief com-
missionedus to explorethe reasons behindthis lack of
research evidence in end of life care.
Practical, ethical, methodological, and emotional
difficulties are experienced by those conducting
research into the end of life.4-9Clark called for more
qualitative research with patients and families, cross
cultural research, longitudinal studies that can identify
thechangingneedsofpatientsandfamilies,andtheuse
of innovative methods that examine the difficulties of
researchinpalliativecaresettings.1Withsomenotable
exceptions,however,fewresearchershavewrittenspe-
cificallyaboutthechallengesinvolvedwithconducting
end of life research.68-10This was confirmed by a sys-
tematic literature review in which we identified only
small numbers of publications related to the practical-
ities of conducting such research.11
METHODS
Methodological approach
Weusedqualitativemethodstolearnabouttheexperi-
ences,perceptions,andpracticeofrelevantresearchers
andtheviewsofpeopleapproachingtheendoflifeand
their carers. We defined end of life broadly as the
months before the death of patients with advanced ill-
ness, whether or not they were receiving palliative
care. We explored issues relating to research con-
ducted with people in the last months to the last days
of life and in bereavement.
Sampling and data generation
We identified a purposive sample of 34 researchers
and completed interviews with 32 (table 1). One per-
son declined for personal reasons, and another was
unavailable during the period of the study. Initially
the researcherswere identified from our systematic lit-
erature review,11which aimed to determine what
methods are being used in cancer studies and how
besttoincludetheviewsofpatientsinthedevelopment
of services. We included papers on research methods
publishedin1980-2004thatsoughttheviewsofpeople
1Primary Palliative Care Research
Group, Division of Community
Health Sciences: General Practice
Section, University of Edinburgh,
EH8 9DX
2St Columba’s Hospice, Edinburgh
EH5 3RW
3Cancer Care Research Centre,
Department of Nursing and
Midwifery, University of Stirling,
Stirling FK9 4LA
Correspondence to: M Kendall
Marilyn.Kendall@ed.ac.uk
doi: 10.1136/bmj.39097.582639.55
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Cite this article as: BMJ, doi:10.1136/bmj.39097.582639.55 (published 28 February 2007)

Copyright 2007 BMJ Publishing Group Ltd

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affectedbycanceraboutendoflifeissues.Thisenabled
us to identify researchers from a range of disciplines
who were using diverse approaches to conducting
end of life research. Some were researchers of inter-
national standing, who were asked to reflect on their
ownresearchexperienceandgiveanoverviewasman-
agers of many projects; others were comparatively
junior researchers with more current “hands-on”
experience. Many had also worked on non-cancer
research. To follow up themes emerging from early
interviews and to include more non-cancer work, we
interviewed two transcribers and researchers with
experience of working in specialties such as HIV/
AIDS, dementia, and education, thus enabling us to
learn from research methods in other sensitive sub-
jects.
Tocomplementtheresearchers’perspectivesandto
include the experience of patients and carers we held
fourfocus groupsthatexploreda rangeof users’ views
of the best ways to conduct research. Day hospice staff
recruited a group of four patients with advanced can-
cer. They met on two occasions, firstly to discuss ways
of conducting research and then to validate the
researcher’s interpretation of the discussion. The sec-
ond group, of three patients specifically interested in
research, was recruited from a cancer network data-
base. The third group, consisting of four carers, was
recruited through a community palliative care team
(table 2).
FHconductedtheinterviewsbytelephoneorfaceto
face and also facilitated the service user focus groups
(see appendix on bmj.com for interview and focus
group schedules).
Data analysis
The interviews with researchers and the focus group
discussions were recorded, fully transcribed with
accompanying field notes, and entered into NVivo
version2.Weintegrated,coded,andthematicallyana-
lysedbothdatasetsusinganinterpretiveapproachand
a coding scheme derived both from the research ques-
tionsandfromissuesthatemergedduringdatagenera-
tion and early analysis.12An anthropologist (FH) led
the analysis with the ongoing involvement and input
of two members of the research team with back-
grounds in sociology and nursing and extensive
experience of end of life research (MK and AW). We
all regularly discussed emerging themes to include
multidisciplinary perspectives (including patients, pal-
liative medicine, and primary care) and further
strengthen and develop the analysis. We agreed on
four major themes.
RESULTS
Most researchers with experience in both end of life
and other research specialties thought end of life
research should not be seen as a special case as the
challengeswereequallyrelevantin othertopicsofbio-
medical and social research. They cited the need for
sensitivity, caution, and respect for the physical and
emotional wellbeing of participants in any research.
The interviews with researchers and the discussions
in user groups highlighted these issues for considera-
tion in conducting end of life research: the design of
end of life studies, recruiting participants, ethical con-
duct, and the emotional challenges faced by partici-
pants, researchers, and transcribers.
Designing end of life studies
Defining end of life
All the researchers discussed the ambiguities around
the concept of end of life, which one health profes-
sional might define as the last 48 hours but others
mightusetorefertothelastsixmonthsorevenlonger.
In addition, the uncertainty surrounding any indivi-
dual patient’s prognosis and the fact that he or she
may be unaware of their status as “terminally ill” or
receiving “palliative care” render it difficult to identify
and recruit patients who clearly have a limited life
expectancy. Problems with defining and standardising
the research numerator and denominator of people
Table1 | Mainresearchmethodsused,disciplinary
backgrounds,andlocationsofresearchersinterviewedinend
ofliferesearch
Methods No of participants
Interviews/focus groups11
Participant observation4
Arts/drama4
Quality of life tools/surveys3
Storytelling2
Narratives/diaries2
Mixed methods6
Not specified6
Discipline:
Psychology/psycho-oncology9
Nursing/medicine7
Medical sociology 5
Social work 3
Medical anthropology2
Creative arts1
Not specified5
Location:
United Kingdom25
Canada3
United States1
Sweden 1
Netherlands1
Australia1
Table2 | Locationandparticipantsoffocusgroups
Location Participants
Focus group 1St Columba’s
Hospice, Edinburgh
4 men aged ≥65 with advanced
cancer
Focus group 2University of
Edinburgh
3 women with experience of
cancer (aged 45-55)
Focus group 3St John’s Hospital,
Livingstone
3womenand1man:spousesof
people with advanced cancer
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facing death has led many researchers to gather proxy
views after death from informal and professional
carers.
Methodological options
End of life researchers were using a range of estab-
lished social science methods, each with its own
strengths and weaknesses. Most researchers thought
that a range of approaches and methods was needed,
given the variety of issues and groups to be investi-
gated. We found considerable interest in the combin-
ing of methods and approaches:
“Wellatthemomenttheprojectwearedoing...we
are using a mixture of quantitative and qualitative
methods to get at different issues and that actually
seemsto be workingreally well becauseit givesusa
sort of broad overview of the experiences of lots of
different people” (researcher 29).
Whilesomediscussedtheimportanceof“innovative
methods” such as arts based research involving drama
or poetry or using story boards, few had ventured
beyond themainstream
researcher said that lack of support from funding
bodieswasabarriertousingmoreinnovativeresearch
techniques. Severalresearchers
approaches and methods from other sensitive issues,
such as long term disability or domestic abuse, could
be useful in end of life research.
Most participants in the focus groups expressed a
preference for qualitative methods. Providing that the
research is conducted sensitively, these methods allow
people to raise and contextualise issues important to
them:
“Let the patient introduce the subject, rather than
the researcher asking questions that might not be
to their liking” (participant in focus group 1).
methods. Onesenior
suggested that
Recruitment of participants
Gatekeepers
Researchers recognised the need to recruit sensitively,
and most sought advice from health professionals on
thesuitabilityofparticipants.Some,however,reported
that health professionals acted as overzealous gate-
keepers, blocking recruitment or introducing a selec-
tionbias.Thisproblem,they suggested,could be ame-
liorated by careful wording of patients’ participation
letters and by establishing good relationships with
health professionals and keeping them fully informed.
All researchers agreed that research should be scru-
tinised and conducted ethically but also found the
bureaucracy and time involved in submissions to
ethics and research committees increasingly burden-
some.Manyspokeofthepaternalismofethicscommit-
tees,whichaddedtotheaccessbarrierimposedbyclin-
iciansactingasgatekeepersforperceived“vulnerable”
patients,ratherthanseeingthemasindividualscapable
of making their own decisions:
“I think patients and family members are people,
human beings in their own rights, citizens of the
world and they can make decisions whether or not
they want to take part in research” (researcher 14).
Inclusive approaches
Difficulties in including people from various ethnic
communities were repeatedly highlighted, these
recruitmentproblemsreflectingdemographicandlan-
guage barriers and the fact that few people from min-
ority groups access specialist palliative care. Given the
recruitmentdifficultieswithinthemajoritypopulation,
itisnotsurprisingthatmanystudiesfailtoengagewith
people from these small populations. Many research-
ers, however, thought that greater efforts should be
made to include these perspectives to ensure that cul-
turally appropriate care is developed. Successful
recruitment strategies included exploring what could
be offered in return for participation (for example,
information sessions about a particular issue, a social
event, or art based activities); gaining the approval of
community leaders; and considering issues from the
perspective of service users to ensure the study design,
research materials, and methods of dissemination are
culturally appropriate.
Other hard to reach groups identified included peo-
ple with physical, sensory, and cognitive impairment;
thosefromsociallydeprivedareas;childrenandyoung
people; and all those with non-malignant conditions.
Many researchers and members of the user focus
groupssuggestedthatthereisaneedformoreinclusive
approachesandmethodsandagreatercommitmentto
recruiting from these groups:
“We are all largely middle class, middle aged, you
know. We are not representative. We are people
who are articulate and can speak out” (participant
in focus group 2).
Do people facing the end of life want to participate in
research?
Participants in the user focus groups confirmed the
researchers’viewsthatmanypeoplewithadvancedill-
ness still want to participate in research. They thought
that the perspectives of patients and carers must be
included in research to develop suitable and effective
services and support. The researchers reported that
many people see their participation as an opportunity
to“givesomethingback”inreturnforthecarethey,or
theirlovedones,havereceivedorasanopportunityto
try to improve services and support for people in the
future. Participants in two of the focus groups spoke at
length about the personal benefit of taking part in
research:
“When I spoke to [researcher’s name] it really
helped me. Because I felt that it was somebody lis-
tening, and I know it helped me” (participant in
focus group 2).
Some participants in focus groups raised concerns
abouttherealvalueofparticipatinginresearch,feeling
thattheeffortsmadeweresometimesatokengestureas
no feedback was received and no change resulted:
“We are speaking, we are saying our piece, and we
go away feeling better, but years down the line you
think, ‘Well, did it make any difference?’” (partici-
pant in focus group 2).
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Researchers also pointed out that research may not
result in changes to patient services, and that partici-
pants should be made aware of this.
Maintaining ethical conduct
Talking about death
As somepotentialparticipants may notunderstand,or
wish to be confronted with, their prognosis, research-
ers advised proceeding as if people do not know they
are dying, unless there is an explicit acknowledgment
tothecontrary.Manyresearchersemphasisedthatthis
should be borne in mind in the design of information
sheetsandquestionnairesforpatients,aswellasduring
interviews – forexample,notusingthephrase“endof
life” in information sheets:
“It’s very difficult as a researcher, you are trying to
ask questions and ascertain what this person knows
about their illness and how they feel about it before
you go a step further” (researcher 3).
Researchersemphasisedtheneedtorespondtocues
given by people about their willingness to discuss end
of life issues and cautioned against asking direct ques-
tions about death and dying. These ethical concerns
were overlaid by more general societal taboos sur-
rounding death and dying, sometimes leading to a
lack of confidence in researchers in approaching such
discussions.
Researchers reported difficulties in giving feedback,
such as copies of project reports, to participants with-
out confronting them with information about end of
life issues that some might prefer to avoid:
“Howdoyouidentifypeoplewhoactuallyaredying
and how do you write it up so that you don’t upset
somepeoplebecausetheystillthinkthey’regoingto
get better?” (researcher 25).
Informed consent
Researching end of life issues necessarily means enga-
gingwithpeople(bothpatientsandtheirfamilies)who
may be in extremely poor health and experiencing
exhaustion, depression, or high levels of stress and
anxiety. For this reason, researchers emphasised the
importance of distinguishing between informed and
valid consent. While it is good practice to ensure that
research participants are fully informed about their
role in a study (balanced with the need to ensure that
theyarenotpresentedwithinformationthatmayupset
them), researchers underlined the importance of
ensuring that, particularly in longitudinal research,
once consent is given, its validity is regularly recon-
firmed. Participants should be given several opportu-
nities to withdraw, up until, and even during, inter-
views or focus groups.
Emotional challenges for participants, researchers, and
transcribers
Some researchers, many of whom had also worked on
non-cancer studies, considered the emotional chal-
lenges of conducting end of life research to be no
greater than those in research with other groups such
aspeoplewithlongtermdisabilitiesorthreatenedwith
domestic violence or child abuse:
“Istartedoffdoingresearchwithstrokepatientsand
I couldn’t have continued with that type of work
because that was, you know, just some of the things
that those people were going through, living with
disability, wasn’t going to get any better, it was
going to get worse and the stress on their carers.
Whereasdying is something that is going to happen
to all of us and so in that sense it’s not a problem for
me” (researcher 7).
Some senior researchers thought it important to
recruit experienced researchers for these studies,
emphasising that often the most important factors are
the skills and personal qualities of the researcher:
“Muchofitcomesdowntotheskillsandtheperson-
ality of the people who are collecting the data, that
you really do need people who are skilled, who are
able and who make it a positive interaction for the
people concerned” (researcher 18).
Research managers often expressed concerns that
end of life research placed heavy demands on junior
researchers, who should be offered formal counselling
sessions as well as informal debriefing and peer sup-
port. They also identified a lack of career structure,
which made it difficult to retain skilled researchers.
Many researchers identified end of life research as
demanding,butmost alsospokeof satisfactiongained.
Witnessingenduringrelationshipsrestoredfaithin the
humancapacitytoreceiveandgiveloveandsupport.It
inspired researchers to re-evaluate their own lives in
more positive ways and, in some cases, face their own
mortality:
“It is, I think, a terrifically important field. It’s
important that we do begin to talk more about end
of life care . . . so the reward for me is knowing that
perhaps one is contributing in a small way to chan-
ging social attitudes and culture around end of life
care” (researcher 13).
Wequestionedstaffwhotranscribedendoflifeinter-
views because researchers had raised concerns about
the emotional demands placed on them. The transcri-
bers explained that events in their own lives could
affect their reactions:
“Avery closefriendof oursdiedjustaboutthistime
lastyearwithcancerandforawhilewheneverIwas
typing I couldn’t stop thinking about him and it
made you look at it very differently” (transcriber 1).
Several researchers warned of the harm that can be
causedbynotpayingattentiontotheemotionalstateof
interviewees. They indicated the importance of know-
ing how to bring the interview to an end in a manner
thatlefttheintervieweeinasafeemotionalstateandof
ensuring access to external support if needed.
DISCUSSION
The evidence from our study indicates that some peo-
ple with advanced illness may want to take part in
research. Researchers with experience in the specialty
consider that end of life research is not essentially dif-
ferentfromothertypesofresearchandnottoodifficult
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to conduct. Nevertheless, there is a dearth of research
on the views of patients and carers on the good death.
Some barriers are practical and methodological:
uncertainty about defining end of life, patients lacking
awareness of their prognosis, and overly protective
gatekeepers hindering recruitment. Although they
may be necessary, imaginative and inclusive methods
are rarely used, reflecting the challenges in attracting
funding for these approaches. More insidious barriers
may lie in the societal taboos surrounding death and
dying that affect such research.
Strengths of this study
We sampled the views of a broad international group
of researchers to determine the reasons for the lack of
research in this specialty. Our approach allowed us to
include the views of researchers and patients and
carers. The qualitative approach enabled an in-depth
explorationofthekeychallengesinendofliferesearch
across a range of disciplines and methodological
approaches. Many of the findings relate to both quan-
titative and qualitative research.
Limitations of this study
Asweusedasystematicreviewtoidentifyresearchers,
our sample comprised those who had conducted and
published research on key issues in end of life study.
Consequently the sample reflects the preponderance
of qualitative methods in such published research.
Researchers using quantitative methods, however,
were also represented, and approaches with mixed
methodswere popular.Most researchersweidentified
were from the United Kingdom, perhaps reflecting a
moreestablishedresearchprogramme,althoughwork
in other countries is growing.
This is also the case for the dominance of published
work concerned with cancer, rather than other non-
malignant conditions, and with earlier stages in the
progression of cancer.
As only a small number of people with advanced
cancer and their carers participated in our user focus
group,wemustbecautiousingeneralisingtheirviews.
Participants were encouraged to express their views
frankly, and their perceptions provided valuable
insights in addition to the data from interviews with
researchers.
Main findings in the context of the existing literature
Gatekeeping by health professionals and ethics com-
mittees has previously been identified as a barrier to
end of life research.341314From our study, however, it
is clear that many people at the end of their life would
welcome the opportunity to participate in research.
Many researchers suggested broadening and deepen-
ing our understanding of end of life research by devel-
opinginnovativeapproachesandmethodsabletocap-
ture the perspectives of a wider range of people,
conditions, and settings.15-17
Researchers were articulate about the professional
and personal challenges faced, as revealed in previous
Table3 | Barrierstoresearchingendoflifecareandpossiblesolutions
Barriers Possible solutions
Difficulties in designing studies
Lack of agreed definitions of palliative care, terminal care, and
end of life
Researchers to provide definitions to recruiters as part of study documentation
Difficulties of specifying/determining prognosis (or difficulty
recognising/defining end of life)
Use specific instruments or prognostic guides, or recruit at a stage in illness
trajectory not at defined prognosis
Variable levels of awareness of diagnosis and prognosis in
patients and carers
Explore participants’ understanding and language they use to describe the illness,
and talk with them at that level
Uncertainty about suitable methodsMatch methods to research aims, resources, and local context. Consider mixed
methods and innovative approaches from other specialties
Funding bodies tend to support only tried and tested methodsEncourage researchers from other specialties/methods who have published
successfully to participate in palliative care research groups. Researchers should
arguecase for innovativemethods toexamineproblems associated with traditional
research approaches, particularly in relation to hard to reach groups
Ethical issues
Staff gatekeeping/ethics committee procedures and attitudes Work closely with staff and keep them well informed. Clarify that issues around
living with illness will be discussed, and sensitive issues will be examined only if
patient gives cues. Involve clinical staff in research steering groups
Maintaining informed consent in longitudinal studies Regularly check willingness to maintain consent
Doubts among clinicians, ethics committees, and carers about
willingness of people at end of life to participate in research
Provide evidence that people want to participate and can do so without harm.
Include users in research development and project management
Challenges in recruiting participants
Difficulties in recruiting representative range of people at end of
life
Use range of recruitment techniques – for example, local media and community
groups, health professionals, and innovative methods
High attrition rates Factor in attrition rates of 30-50% for longitudinal studies
Emotional challenges
Researchers Employ experienced researchers; offer training in advanced communication,
palliative care induction. Plan interview workload (three a week). Provide debriefing
and peer support sessions. Budget for external support and supervision
Transcribers Include debriefing and support sessions as required
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literature,46817-19but many, especially those who had
worked in other types of research, challenged the
idea that end of life research is a special case, more
difficult or sensitive than many other areas of social
research.2021Wesummarisethebarrierstoresearching
end of life care and possible solutions in table 3.
The personal and societal taboos surrounding death
and dying present a major challenge, and funding
bodies, ethics committees, and researchers are also
affected by them. The concept of social death is well
established in the literature: people can suffer a social
death before their physical death as society turns away
fromthedying.22Somepeople’sdesiretoparticipatein
research at the end of life may itself be an example of
resistance to social death, an opportunity to be an
active and participating citizen again rather than an
invalid or patient.
CONCLUSIONS
The lack of openness in society about death and dying
actsasabarriertoendofliferesearch,yetsuchresearch
is essential. It must, however, be conducted with ethi-
calandmethodologicalrigourandinwaysthatsupport
patients, their relatives, transcribers, and researchers.
A range of methods and approaches is needed, draw-
ing on work from many specialties, to make the
research effective and more inclusive. Ethics commit-
tees and clinicians must balance concern about non-
maleficencewiththeautonomyofpeopletoparticipate
if they want. By not letting them, we mark them as
“different” and deny them the opportunity to decide
for themselves.
WethankAlisonAllanforherassistancewithrecruitmentandaccesstopatients
at St Columba’s Hospice; Patricia Black, June Walker, and the community
palliative care nurses at St John’s Hospital for their help in recruiting carers to
participate in this research; Sam Held for recruitment of people affected by
cancer through the South-East Scotland Cancer Network; researchers for
sharing theirviewsand concerns;and serviceusers who offered uniqueinsight
into conducting research. We also thank David Chinn for input and comments
on this paper.
Contributors: All authors designed the study and met as a steering group
throughouttohelpinterpretandanalysethedata.FHundertooktheleadindata
analysis together with MK and AW, and all authors wrote the paper. MK is the
guarantor.
Funding: Macmillan Cancer Relief.
Competing interests: None declared.
Ethical approval: The local research ethics committee, the local NHS Board,
and the management of the hospice.
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Accepted: 3 January 2007
WHAT IS ALREADY KNOWN ON THIS TOPIC
There is little research evidence from patients and carers on what constitutes a good death
This problem is most acute in relation to marginalised populations
WHAT THIS STUDY ADDS
Many people facing death may want to contribute by being included in research
Standard research approaches can be effective, but greater inclusion might be achieved by
adopting and developing innovative methods from other specialties
Researchers consider that end of life research is no more challenging than many other areas
of health and social research
Barriers to end of life research arise not only from ethical, practical, methodological, and
emotional challenges but also from societal attitudes to ageing and death
RESEARCH
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