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White paper on standards and norms for hospice and palliative care in Europe: Part 1

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278 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
EAPC update
1. Background
The modern hospice movement was introduced
by Cicely Saunders with the opening of
St Christopher’s Hospice in London in 1967.
However, as early as 1975, Balfour Mount found
aconfusion of terms when he looked for a
designation for his newinpatient unit in
Montreal, as in French-speaking Canada
‘hospice’ was already used in a different
context, leading to the introduction of the term
‘palliativecare’.
The struggle for a common language has been
going on since then in hospice and palliative
care throughout the world and has hampered
the development of international standards and
norms. Recently, the European Association for
Palliative Care (EAPC) commissioned a survey on
the development of palliative care in European
countries. The Task Force on the Development
of PalliativeCare in Europe, led by Carlos
Centeno and David Clark, has just published the
results in the EAPC Atlas of PalliativeCarein
Europe,providing for the first time valid data for
comparison of the state of palliative care across
European countries.1,2 This evaluation showed
some common structures, but also a wide variety
in the structure of service development and care
delivery. These differences are at least partly
related to different understanding of the
underlying concepts and the terms of palliative
medicine. The development of a common
terminology has been claimed as a prerequisite
for meaningful comparisons.3
Following this lead, the EAPC is nowputting
forward suggestions for a common European
terminology following a consensus process with
the national associations. Norms will be
defined on the basis of this consensual
terminology. Guidance on norms and standards
are necessary not only for healthcare
professionals working in hospice and palliative
caresettings, but also for decision-makersin
healthcarewho are responsible for adequate
access to palliative care for patients.
With the ongoing development of palliative
care throughout Europe, decision-makers are
challenged not only to decide where and when
palliative care services should be developed, but
also how they should be equipped and
configured. Adequate structural quality is a
prerequisite for high quality of care.
Administrative and political decision-makers
will aim for cost-effectiveness, and try to reduce
costs byallocating a minimum of staff or
reimbursement. Careproviders will negotiate
for adequate staff resources necessary for high
quality of care. In this conflict, bothsides will
seek guidance on structural quality.
In this paper, the EAPC presents norms on
structural quality for the provision of palliative
care with in- and outpatient services in different
settings. This White Paper takes into account the
different concepts in the European countries
and regions. This is acknowledged by the
description of norms rather than the definition
of standards. Whereas standards would imply
an absolute limit below which quality palliative
care is not possible (minimal standards), norms
represent a consensus on quality goals that have
to be aimed for (aspirational norms). If (or
White Paper on standards
and norms for hospice and
palliative care in Europe: part 1
Recommendations from the European Association
for Palliative Care
In this official position paper of the European Association for Palliative Care (EAPC), Lukas
Radbruch, Sheila Payne and the Board of Directors of the EAPC outline and explain the
association’s recommendations for a common terminology and common quality norms
279
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
EAPC update
when) norms are achieved, high quality can be
safely expected.
2. Methods
This White Paper is designed to provide
guidance and recommendations for service
providers, stakeholders and decision-makers.
The first draft was presented at a cancer
conference in February 2008 during the
Slovenian presidency of the European Union.
As previously stated, the EAPC presents
norms and working definitions rather than
standards. Standards set rigid limits with cut-off
values, implying that units not achieving them
would lose their specialist status. EAPC norms
affirm how things ought to be to provide high-
quality palliative care, but services that do not
meet one or more of these norms due to local
or regional differences will not be discriminated
against. Taking into account the differences in
the healthcare systems as well as different
cultural backgrounds, it does not seem possible
to agree on standards with national associations
in more than 20 countries. However, a
consensus on norms does seem realistic.
The Board of Directors of the EAPC gave the
remit of preparing this paper to a writing
committee (Saskia Jünger, Sheila Payne and
Lukas Radbruch). The draft manuscript was
reviewed by experts within the EAPC (Franco De
Conno, Carl-Johan Fürst, Geoffrey Hanks, Irene
Higginson, Stein Kaasa, Phil Larkin, Friedemann
Nauck). The draft was revised with the feedback
from these experts and this revised draft was
circulated to the Board members of the national
member associations of the EAPC. Feedback
from the national associations was elicited with
a Delphi procedure, asking for the level of
agreement or disagreement with each norm
suggested. Representatives of 35 different
national hospice and palliative care associations
from 22 European countries have participated
in the consensus procedure. Using the feedback
from the Delphi process, a final revision of the
paper was prepared. This final version was
submitted to the Board of Directors of the EAPC
and adopted as an official position paper.
2.1 The purpose of norms
Norms can be developed on a national and
a regional/local level. The national level
represents a uniform strategy for development
and control; it can save time and energy. At the
regional or local level, the national norms are
adapted to the specific characteristics of the
respective regions or institutions. Evidently, the
best approach results from a combination of
both.4The introduction of norms presumes a
far-reaching consultation and agreement with
all involved participants, in order to ensure
validity, as well as relevance. The aims and goals
of palliative care norms are outlined in Box 1.
2.2 Key areas of norms in palliative care
This paper is not based on a systematic review,
but rather on a scoping of publications and
other sources from acknowledged official
institutions such as the Council of Europe. The
key areas outlined in this paper have been
derived from existing documents on norms and
standards in palliative care from different
organisations, associations, nations and
committees.4–7 This paper covers the following
key elements of palliative care:
Definition and terminology of palliative care
and hospice care
Common values and philosophy
Levels of care
Patient groups
Services and settings.
Other key areas – such as availability of, and
access to, services; education for healthcare
providers; clinical audit and documentation
standards; public education and awareness; and
research – are not included in this paper and
will be covered separately.
2.3 Sources of bias
The consensus-building process on norms for
quality palliative care in the European Union
Promote quality and reduce variation in new
and existing programmes
Develop and encourage continuity of care
across settings
Facilitate collaborative partnerships among
palliative care programmes, community
hospices and a wide range of other healthcare
delivery settings
Facilitate the development and continuing
improvement of clinical palliative care
programmes
Establish uniformly accepted definitions of the
essential elements in palliative care that
promote quality, consistency and reliability of
those services
Establish national goals for access to quality
palliative care
Foster performance measurement and quality
improvement initiatives
Box 1. Aims/goals of palliative care norms5
280 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
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bears several challenges due to the considerable
heterogeneity of service provision in the
different countries. Some types of services have
been developed only in certain countries.1For
example, the results of the study of the EAPC
Task Force revealed that, among 52 European
countries, only five countries have a well
developed and extensive network of inpatient
hospices. In contrast, other countries have a
much higher proportion of home-care teams.
This leads to the question of whether a
common approach will do justice to the
different regional, geographical and cultural
focuses regarding the provision of palliative
care. The same is true for the issue of terms and
definitions. Herein, the task of attaining
consensus might be even more challenging
than in North America. After all, the European
Union consists of countries with millennia of
history and language that keep them separated
– and it must be acknowledged that there is a lot
of pride in the differences.3
Therefore, the consensus building process has
to take into account whether European norms
of care provision can be dovetailed to the
respective demographical and cultural aspects
in the different countries and regions.
Palliative care policy is a rapidly evolving
field; since the start of the European consensus
process, two important government reports
have been published. In July 2008, the End of
Life Care Strategy for England was published by
the Department of Health;8in April 2009, the
second edition of the consensus guidelines of
the National Consensus Project of the USA was
released.9The updates of this second edition, as
well as specific guidelines of the End of Life Care
Strategy, could not be considered in the
European consensus process. By means of a post
hoc validation, the writing committee has
verified that the statements in this White Paper
are still in accordance with the
recommendations in these recent documents.
3. Terminology
The attempt to examine and compare palliative
and hospice care in Europe revealed a
heterogeneous terminology.1,10 The differences
in terminology did not only appear in the
scientific literature, but also in texts of law,
government bills and expert statements of
relevant associations.10 For example, by means of
a discourse analysis of palliative care definitions,
Pastrana et al have noticed the use of different
terms referring to overlapping medical fields
such as ‘hospice’, ‘hospice care’, ‘continuing
caring’, ‘end-of-life care’, ‘thanatology’, ‘comfort
care’ and ‘supportive care’.11 Moreover, different
terms may trace back to different cultural
backgrounds. For example, in the German
language, there is no direct equivalent for the
term palliative care, and thus ‘Palliativmedizin’
is used both for palliative care and palliative
medicine.1
1However, the synonymous use of
‘Palliativmedizin’ (palliative medicine) with
palliative care has led to concerns about a
medicalisation of palliative care in Germany.11
Therefore, some experts even used the English
term ‘palliative care’ to differentiate from
palliative medicine. Only in the last year has the
term ‘Palliativversorgung’ been accepted as
synonymous with palliative care. Similarly, in
other European languages, it is not evident in
how far the same concepts are intended by the
term officially used for palliative care (see Table 1).
It is obvious that an effective European
approach to quality palliative care demands an
unambiguous use of terms, which implies, as a
prerequisite, the mutual agreement on the
definitions of these terms. The Task Force on the
Development of Palliative Care in Europe has
compared service development and provision of
care in 42 European countries in the Atlas of
Palliative Care.2In a critical appraisal of the Atlas,
the importance of a common language was
underlined, as comparative charts will only have
leverage when they are based on a shared
language where the same word will have the
same meaning in each country where it is used.3
Realising that full consensus will not be
possible within the scope of languages and
cultures in Europe, the EAPC will use the
following working definitions of palliative care
and hospice care.
3.1 Palliative care
Palliative care is the active, total care of the
patient whose disease is not responsive to
curative treatment. Control of pain, of other
symptoms, and of social, psychological and
spiritual problems is paramount. Palliative
care is interdisciplinary in its approach and
encompasses the patient, the family and
the community in its scope. In a sense,
palliative care is to offer the most basic
concept of care – that of providing for the
needs of the patient wherever he or she is
cared for, either at home or in the hospital.
Palliative care affirms life and regards dying
as a normal process; it neither hastens nor
An effective
European
approach
to quality
palliative care
demands an
unambiguous
use of terms
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postpones death. It sets out to preserve the best
possible quality of life until death.12
Despite the cultural differences regarding the
palliative care approach across Europe, the EAPC
definition of palliative care has had a unifying
impact on the palliative care movements and
organisations of many European countries.13
The EAPC definition is slightly different from
the definition of the World Health Organization
(WHO), given below.
Palliative care is an approach that improves
the quality of life of patients and their families
facing the problems associated with life-
threatening illness, through the prevention
and relief of suffering by means of early
identification and impeccable assessment and
treatment of pain and other problems,
physical, psychosocial and spiritual.14
This WHO definition has replaced an older
definition of the WHO that was restricted to
patients ‘whose disease is not responsive to
curative treatment’.15 The new and modified
WHO definition from 2002 extends the scope
of palliative care to patients and families
‘facing the problems associated with life-
threatening illness’.1
6
3.2 Hospice care
Hospice care is for the whole person, aiming
to meet all needs – physical, emotional, social
and spiritual. At home, in day care and in the
hospice, they care for the person who is facing
the end of life and for those who love them.
Staff and volunteers work in multi-
professional teams to provide care based
on individual need and personal choice,
striving to offer freedom from pain, dignity,
peace and calm.17
The definition of hospice care meets with
much less consensus than the definition of
palliative care. There seem to be fundamental
differences in the understanding of hospice
care, which probably reflect the different ways
that hospices are used in Western Europe. In
some countries, there is a clear distinction
between hospice and palliative care, whereas in
Table 1. Conventional terms for ‘palliative care’ in different European countries
Country Terms for ‘palliative care’ Other terms
Austria Palliativ(e) Care; Palliativmedizin; palliative Lindernde Fürsorge (relief and comfort)
Betreuung / Palliativbetreuung; Palliativversorgung
Belgium (Flemish) Palliatieve zorg
Belgium (Walloon) Soins palliatifs
Republic of Croatia Paljativna skrb
Cyprus Anakoufisiki frontitha / frontida Paragoritikes agogis (relief or comfort)
Czech Republic Paliativni pece
Denmark Palliative indsats; palliative behandeling (og pleje)
France Soins palliatifs Accompagnement de fin de vie (accompaniment
at the end of life)
Germany Palliativmedizin; Palliativversorgung Hospizarbeit ([volunteer] hospice work)
Greece Anakoufistiki frontida
Hungary Palliatv ellts
Iceland Líknarmedferd / líknandi medferd
Ireland Palliative care
Israel Tipul tomeh / tomech; tipul paliativi Palliative care
Italy Cure palliative
Latvia Paliativa aprupe
The Netherlands Palliatieve zorg Terminale zorg (terminal care)
Norway Palliativ behandeling; palliativ omsorg; Lindrende behandling og omsorg (relief and
palliativ madisin; palliativ pleie comfort); palliative care
Portugal Cuidados paliativos
Spain Cuidados paliativos
Sweden Palliativ vård; palliative medicin
Switzerland Palliative Care; Palliative Betreuung
UK Palliative care; palliative medicine Supportive and palliative care; end-of-life care
282 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
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other countries, the terms are used
synonymously. If a distinction is made, it can be
related to the institutional framework,
describing a palliative care unit as a ward within
a general hospital versus an inpatient hospice as
free-standing service.
However, the distinction can also relate to
the indications for admission or the type of
interventions offered. Using this framework, in
Germany, for example, a palliative care unit as
part of a hospital primarily aims at crisis
intervention and medical stabilisation, whereas
an inpatient hospice provides end-of-life care
for patients who can not be cared for at home.
This categorisation would not be used in
other countries.
In some countries, a similar distinction is
made for outpatient services. In Germany,
palliative home-care services focus on nursing,
whereas home-care hospice services mainly
provide volunteer psychosocial support.
In some countries, the meaning of hospice
represents the philosophy of care more than a
certain type of setting where care is provided.18
In Germany, for example, hospice work has been
used predominantly for the provision of care
that has developed as a community movement,
depending strongly on volunteer engagement,
whereas palliative care and, more specifically,
palliative medicine are seen as a medical field.
However, as the underlying philosophy as
well as the definitions of palliative care and
hospice care overlap to a large extent, we
will use the term ‘palliative care’ throughout
this paper to represent both hospice and
palliative care.
3.3 Supportive care
Supportive care is the prevention and
management of the adverse effects of cancer
and its treatment. This includes physical and
psychosocial symptoms and side-effects across
the entire continuum of the cancer
experience, including the enhancement of
rehabilitation and survivorship.19
There is considerable overlap and no clear
differentiation between the use of the terms
‘palliative care’ and ‘supportive care’.
However, most experts agree that supportive
care is more appropriate for patients still
receiving antineoplastic therapies and also
extends to survivors, whereas palliative care has
its major focus on patients with far advanced
disease where antineoplastic therapies have
been withdrawn.20 However, a national survey
in Germany has shown that 9% of the patients
in palliative care units received chemotherapy.21
Cancer survivors would not be included in the
target groups of palliative care. On the other
hand, palliative care covers not only cancer
patients, but also other patient groups with
life-threatening diseases.
Supportive care should not be used as a
synonym of palliative care. Supportive care is
part of oncological care, whereas palliative
care is a field of its own extending to all
patients with life-threatening disease.
3.4 End-of-life care
End-of-life care may be used synonymously
with palliative care or hospice care, with end
of life understood as an extended period of
one to two years during which the
patient/family and health professionals
become aware of the life-limiting nature of
their illness.
The term ‘end-of-life care’ is widely used in
North America and it has been picked up by
regulatory bodies in European countries,
sometimes with the understanding that
palliative care is associated predominantly with
cancer, whereas end-of-life care would be
applicable to all patients. For example, in
England, the NHS End of Life Care Strategy was
published in 2008 to improve dying for all
patients wherever they receive care.8
End-of-life care may also be understood
more specifically as comprehensive care
for dying patients in the last few hours or
days of life.
End-of-life care in the restricted time frame of
the last 48 or 72 hours of life is the goal of the
Liverpool Care Pathway for the Dying Patient.
This approach has been promoted to transfer
the hospice model of care to patients dying in
non-specialised settings.22 Used with this
connotation, end-of-life care may also be
implemented as a standard of care for dying
patients not requiring palliative care.
Considering the ambiguity of the term and
the degree of overlap between end-of-life care
and palliative care, no specific reference will be
made to end-of-life care in this paper.
3.5 Terminal care
Terminal care is an older term that has been
used for comprehensive care of patients with
advanced cancer and restricted life expectancy.
More recent definitions of palliative care
are not restricted to patients with restricted life
Supportive
care is the
prevention and
management of
the adverse
effects of
cancer and its
treatment
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EAPC update
expectancy in the final stage of the disease.
The term ‘terminal care’, therefore, has
lost relevance and should not be used any
more, or only to describe the care given
during the very last stage (the last few days)
of illness.
3.6 Respite care
Family members or other primary caregivers
caring for a palliative care patient at home
may suffer from the continuous burden
of care. Respite care may offer these
patients and their caregivers a planned or
unplanned break.23
Respite care can be provided in day-care
facilities, inpatient units or through specialist
home-care services.
4. The philosophy of palliative care
Despite the differences among national
approaches to palliative care, a series of
common values and principles can be
identified in the literature, which have been
recognised and endorsed by hospice and
palliative care activities.11,24
Throughout the European countries, a set
of common values is acknowledged among
palliative care experts. This includes the value
of patient autonomy and dignity, the need for
individual planning and decision-making and
the holistic approach.
4.1 Autonomy
In palliative care, the intrinsic value of each
person as an autonomous and unique
individual is acknowledged and respected.
Care is only provided when the patient and/or
family are prepared to accept it. Ideally, the
patient preserves his/her self-determination
regarding the power of decision on place of
care, treatment options and access to specialist
palliative care.
Patients should be empowered to make
decisions if they wish. This requires the
provision of adequate information on
diagnosis, prognosis, treatment and care
options and all other relevant aspects of care.
However, there is an ongoing discussion on
the ethical challenge when decision-making
capacity is not available or not wanted by the
patient, and information and decision-making
shift to the family or the palliative care staff.
The balance between autonomy and
protective care seems to be influenced by
cultural factors, as, in some countries, the shift
of decision-making from patient to caregiver is
reported more frequently.
4.2 Dignity
Palliative care is supposed to be performed
in a respectful, open and sensitive way,
sensitive to personal, cultural and religious
values, beliefs and practices as well as the law
of each country.
As with quality of life, dignity seems to be an
individual concept including different domains
and priorities for each patient. Depending on
the definition, dignity may be seen rather as an
inherent property than as an item that can be
damaged or lost. Following this view, palliative
care is challenged to provide a setting where the
patient can feel and enact their dignity.
4.3 Relationship between patient–healthcare
professionals
Palliative care staff should maintain a
collaborative relationship with patients and
families. Patients and families are important
partners in planning their care and managing
their illness.
Palliative care holds a salutogenic view with
emphasis on the resources and competencies of
patients, and not simply on their difficulties.11
Herein, a resilience-oriented approach has
recently received increasing recognition.
Resilience describes the ability of patients to deal
with incurable disease and related problems,
and with the change of perspective due to a
restricted life expectancy. The concept of
resilience offers a change of paradigm: whereas
the focus on symptoms, risks, problems and
vulnerability is deficit-oriented, the focus on
resilience is resource-oriented. Resilience
emphasises the importance of public health and
creates a partnership between patients,
professionals and community structures.25
4.4 Quality of life
A central goal of palliative care is to achieve,
to support, to preserve and to enhance the
best possible quality of life.
Care is guided by the quality of life as defined
by the individual. More specifically, bio-
psychosocial and spiritual quality of life have
been named, and standardised questionnaires
are used for the assessment of health-related
and disease-specific quality of life. However, the
meaning of ‘quality of life’ can only be
determined by each palliative care patient
individually for themselves.1
1Relevant
Throughout
the European
countries, a set
of common
values is
acknowledged
among
palliative care
experts
284 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
EAPC update
dimensions of the individual quality of life, as
well as priorities within these dimensions, often
shift in relation to the progression of the
disease. Quality of life seems to depend more
on the perceived gap between expectations and
actual performance status than on an objective
impairment of function.
4.5 Position towards life and death
Many definitions of palliative care include a
position towards life and death.11 The first
definition of the WHO in 1990 postulated that
‘palliative medicine affirms life and regards
dying as a normal process’, and other
definitions have shared this position. Death is
seen on the same level as life, inseparable from
it, and as a part of it.
Palliative care seeks neither to hasten death
nor to postpone it.
The provision of euthanasia and physician-
assisted suicide should not be part of the
responsibility of palliative care.13
‘The value of life, the natural process of
death, and the fact that both provide
opportunities for personal growth and self-
actualisation’ should be acknowledged.24
4.6 Communication
Good communication skills are an essential
prerequisite for quality palliative care.
Communication refers to the interaction
between patient and healthcare professionals,
but also to the interaction between patients
and their relatives as well as the interaction
between different healthcare professionals
and services involved in the care.
Dissatisfaction and complaints about care can
often be attributed to ineffective
communication rather than inadequate service
delivery,4whereas effective communication has
been shown to improve patient care.26
Communication in palliative care is much more
than the mere exchange of information.
Difficult and sometimes painful concerns have
to be considered, which requires time,
commitment and sincerity. For palliative care
staff, it can be a challenging task to convey
honest and complete information on the one
hand, and respect the patient’s and their
families’ hopes for survival despite the
oncoming death on the other hand.27 Adequate
prerequisites for effective communication have
to be provided,4including training and
education, appropriate space and
accommodation, time for interaction with
patients and their families and for exchange
with the team, as well as access to up-to-date
information technology.
4.7 Public education
The Council of Europe claims that it is of
utmost importance to create a climate of
acceptance for palliative care in the member
states of the European Union.4Therefore, it is
essential to build community capacity and to
promote preventive healthcare that will leave
future generations less afraid of the dying and
bereavement that will confront all of us.25
4.8 Multiprofessional and interdisciplinary
approach
Team work is regarded as a central component
of palliative care.28 A multiprofessional team
includes members from different healthcare
and non-healthcare professions and disciplines
who work together to provide and/or improve
care for patients with a particular condition.
The composition of multiprofessional teams
will differ according to many factors, including
the patient groups served, the extent of the care
provided and the local area of coverage.29
Palliative care is supposed to be provided
within a multiprofessional and
interdisciplinary framework. Although the
palliative care approach can be put into
practice by a single person from a distinct
profession or discipline, the complexity of
specialist palliative care (see under Chapter 5.
‘Levels of palliative care’) can only be met by
continuous communication and collaboration
between the different professions and
disciplines in order to provide physical,
psychological, social and spiritual support.
There are clear indications that teamwork in
palliative care is advantageous for the patient.4
A systematic literature review on the
effectiveness of specialist palliative care teams in
cancer care by Hearn and Higginson has
revealed evidence that specialist teams in
palliative care improve satisfaction, and identify
and deal more with patient and family needs,
compared with conventional care.30
Moreover, multiprofessional approaches
turned out to reduce the overall cost of care by
reducing the amount of time patients spend in
acute hospital settings. A more recent review
supported the evidence of the positive effect of
palliative care teams, with the strongest effect
for patient pain and symptom control.31 The
extension of the team can be dealt with flexibly
Palliative care
seeks neither
to hasten death
nor to
postpone it
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and has to be determined by the patient’s
needs. The minimal version, therefore, can
consist of a general practitioner and a
specialised nurse. However, in most cases, social
workers, psychologists and/or volunteers are
involved in the teams. The Council of Europe
recommends that the leadership role of every
section in specialised palliative care teams
should be adopted by an approved professional
qualified in palliative care.4
4.9 Grief and bereavement
Palliative care offers support to family and other
close carers during the patient’s illness, helps
them prepare for loss and continues to provide
bereavement support, where required, after the
patient’s death. Bereavement services are
recognised as a core component of palliative
care service provision.4,5
Grief and bereavement risk assessment is
routine, developmentally appropriate and
ongoing for the patient and family
throughout the illness trajectory, recognising
issues of loss and grief in living with a life-
threatening illness. Bereavement services and
follow-up support are made available to the
family after the death of the patient.
5. Levels of palliative care
Palliative care can be delivered on different
levels. At least two levels should be provided:
a palliative care approach and specialist
palliative care.
Currently, in most documents, a two-level
approach of palliative care can be found; that is,
the differentiation between a palliative care
approach and specialist palliative care. The
palliative care approach would be used in
settings and services only occasionally treating
palliative care patients. In contrast, specialist
palliative care applies to a team of appropriately
trained physicians, nurses, social workers,
chaplains and others whose expertise is required
to optimise quality of life for those with a life-
threatening or debilitating chronic illness.5
5.1 Palliative care approach
The palliative care approach is a way to
integrate palliative care methods and
procedures in settings not specialised in
palliative care. This includes not only
pharmacological and non-pharmacological
measures for symptom control, but
also communication with patient and
family as well as with other healthcare
professionals, decision-making and goal-
setting in accordance with the principles of
palliative care.
The palliative care approach should be made
available for general practitioners and staff in
general hospitals, as well as for nursing services
and for nursing home staff. To enable these
service providers to use the palliative care
approach, palliative care has to be included in
the curricula for medical, nursing and other
related professionals’ basic education. The
Council of Europe recommends that all
professionals working in healthcare should be
confident with the basic palliative care
principles and able to put them into practice.4
5.2 General palliative care
This two-step ladder of care levels can be
extended to three steps, with a palliative care
approach, general palliative care and specialist
palliative care. General palliative care is
provided by primary care professionals and
specialists treating patients with life-threatening
diseases who have good basic palliative care
skills and knowledge.
Professionals who are involved more
frequently in palliative care, such as
oncologists or geriatric specialists, but do
not provide palliative care as the main
focus of their work, still may have acquired
special education and training in palliative
care and may provide additional expertise.
These professionals can provide general
palliative care.4
5.3 Specialist palliative care
Patients with life-threatening disease, and those
important to them, may have complex needs,
which require the input of the specialist
palliative care team.29 Specialist palliative care
describes services whose main activity is the
provision of palliative care. These services
generally care for patients with complex and
difficult needs and therefore require a higher
level of education, staff and other resources.4
Specialist palliative care is provided by
specialised services for patients with complex
problems not adequately covered by other
treatment options.
All patients with progressive incurable diseases
should have access to specialist palliative care
services, which address proactively all the
symptoms of their condition and the effect these
symptoms have on them and their families/
carers.29 Patients with complex palliative care
The palliative
care approach
is a way to
integrate
palliative care
methods and
procedures in
settings not
specialised in
palliative care
286 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
EAPC update
needs require a wide range of therapeutic
interventions for symptom control. The relevant
specialist palliative care services must have access
to the necessary level of trained staff to safely
manage these interventions.
Specialist palliative care services require
a team approach, combining a multi-
professional team with an interdisciplinary
mode of work. Team members must be highly
qualified and should have their main focus of
work in palliative care.
The provision of specialist palliative care
services has to be performed by palliative care
professionals who have undergone recognised
specialist palliative care training.5,29 The team
members are supposed to have expertise in the
clinical management of problems in multiple
domains in order to meet the patient’s complex
needs. Their work reflects substantial
involvement in the care of patients with life-
threatening or debilitating chronic illness, and
their families.
5.4 Centres of excellence
The ladder can also be extended to a fourth
level, that of centres of excellence. Centres
of excellence should provide specialist
palliative care in a wide variety of settings,
including in- and outpatient care, home
care and consultation services, and should
provide academic facilities for research and
education. The role of centres of excellence
is still under discussion, and the position of
such centres in a multilevel approach will
depend on that discussion.
Centres of excellence in palliative care
should act as a focus for education, research
and dissemination, developing standards and
new methods.
6. Population served
6.1 Patients
Palliative care is not restricted to predefined
medical diagnoses, but should be available for
all patients with life-threatening diseases.
Palliative care is appropriate for any patient
and/or family living with, or at risk of
developing, a life-threatening illness due to any
diagnosis, with any prognosis, regardless of age,
and at any time they have unmet expectations
and/or needs and are prepared to accept care.32
Palliative care may complement and enhance
disease-modifying therapy or it may become
the total focus of care. Some aspects of palliative
care may also be applicable to patients at risk of
developing an illness and their families.
Each year, 1.6 million patients in the
European region will die from cancer and
approximately 5.7 million from non-cancer
chronic diseases.
In the European region (as defined by the
WHO), 881 million inhabitants are registered.
Age-standardised death rates have been
calculated for this region, with 9,300 deaths per
million inhabitants. Out of these,
approximately 1,700 deaths are related to cancer
and 6,500 to non-cancer chronic diseases.33 This
calculation is supported by a recent review
suggesting that there are 1.7 million cancer
deaths per year in Europe.34
The vast majority of these patients will suffer
from pain, dyspnoea and other physical
symptoms or will require support with
psychosocial or spiritual problems with the
progression of their disease. An Australian
workgroup estimated the population for
palliative care to be between 50% and 89% of all
dying patients, using different approaches in a
conceptual framework.35 Whereas a palliative
care approach will provide adequate care for
many of these patients, it has been estimated
that at least 20% of cancer patients and 5% of
non-cancer patients require specialist palliative
care in the last year of their life.36 However,
these percentages have been challenged in the
consensus procedure, and much higher
percentages of cancer as well as non-cancer
patients requiring palliative care have been
suggested. These estimates will also depend
upon specific patterns of disease in different
countries. Treatment times will vary from a few
days to several years, but, with the advances of
modern medicine, many of these patients will
need palliative care for longer periods of time
and not only in the final year of their life.
This means that, at any given time, more
than 320,000 cancer patients and 285,000
non-cancer patients require support or care
from specialist palliative care services in the
European region (as defined by the WHO).
These numbers are rather conservative
estimates, as symptom load and palliative care
needs are often not recognised and
consequently may be much higher than
estimated. These estimates also assume that
general palliative care is well developed and
generally available, which is true only for few
European countries. Other reports from the UK
have used higher numbers of cancer and non-
cancer deaths and estimated considerably
Specialist
palliative care
services require
a team
approach
287
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)
EAPC update
higher percentages of patients requiring
specialist palliative care.37
In all European countries, palliative care is
predominantly delivered to patients with far
advanced cancer. Patients with other diseases,
such as neurological diseases, HIV/AIDS, or
with cardiac, pulmonary or renal failure, may
have the same palliative care needs as cancer
patients, but will find it much harder to access
palliative care.
Prevalence of physical symptoms as well as
psychological, social and spiritual needs are as
frequent in patients with chronic neurological,
cardiac, cerebrovascular, pulmonal or
renal disease or HIV/AIDS. The pattern of
symptoms and the disease trajectory may be
different from those of cancer patients.38,39
However, many of these patients require either
a palliative care approach or even specialist
palliative care, as intensity and complexity of
symptoms and problems may be similar to
those of cancer patients.
Providing access to high-quality palliative
care for non-cancer patients should be a
priority of national and European health
policy development.
Today, more than 95% of all patients
currently treated in specialist palliative care
services suffer from cancer.40 However, the low
percentage of non-cancer patients is primarily
related to higher barriers preventing access of
these patients to palliative care providers, as
palliative care in the public and medical
opinion is often perceived to be restricted to
cancer patients.
Adequate provision of palliative care for
non-cancer patients requires additional
resources. If non-cancer patients were to have
equal access to palliative care compared to
cancer patients, the percentages of patients
requiring palliative care are estimated at 40%
(non-cancer patients) and 60% (cancer
patients) respectively.
With the demographic changes of aging
populations, the pattern of mortality also
changes.41More people are now living longer
and the proportion of those living beyond 60
years has increased, and will increase further
over the next 20 years.41 With increasing life
expectancy, more people die as a result of severe
chronic diseases, such as heart disease,
cerebrovascular disease and respiratory disease,
as well as of cancer. As more people live to older
ages, and as chronic diseases become more
common with older age, the numbers of people
in the population living with, and suffering
from, these diseases will increase as well. With
ongoing medical progress, patients will survive
longer with chronic disabling disease, and in
consequence will require palliative care over a
longer period of time.
The number of cancer patients requiring
palliative care will also increase in the years
to come, as the number of patients living
with cancer is expected to increase, due to
earlier diagnosis, improved treatment and
longer survival.40
National health strategies should include
plans to cover an increasing demand. A recent
analysis of past trends and future projections in
mortality in England and Wales underlined the
urgent need to plan for a large increase of aging
and deaths, requiring either substantially more
inpatient facilities or extensive development of
community care.42
6.2 Disease stage
There is no predefined time point in the
course of the disease marking the transition
from curative to palliative care.
Palliative care is appropriate for all patients
from the time of diagnosis with a life-
threatening or debilitating illness.5The term
‘life-threatening or debilitating illness’ here is
assumed to encompass the population of
patients of all ages with a broad range of
diagnostic categories, who are living with a
persistent or recurring condition that adversely
affects daily functioning or will predictably
reduce life expectancy.
Most patients will need palliative care only
with far advanced disease, but some patients
may require palliative care interventions for
crisis management earlier in their disease
trajectory. This can be a period of several years,
months, weeks or days.4
The transition from curative to palliative care
is often gradual rather than a clear time point,
as the treatment goal shifts more and more
from life prolongation at all costs to
preservation of quality of life, with a need to
balance between treatment benefit and burden.
6.3 Children and adolescents
Palliative care for children represents a
special, albeit closely related field, to adult
palliative care.43
The Council of Europe points to the specific
challenge of palliative care for children with
incurable and life-threatening diseases.4
Providing
access to
high-quality
palliative care
for non-cancer
patients should
be a priority
Palliative care for children begins when the
illness is diagnosed, and continues regardless
of whether or not the child receives treatment
directed at the disease.44 The unit of care is the
child and family.
Life-limiting illness in children is defined as a
condition where premature death is usual; for
example, Duchenne muscular dystrophy.44 Life-
threatening illnesses are those with a high
probability of premature death due to severe
illness, but where there is also a chance of long-
term survival into adulthood; for example,
children receiving cancer treatment or admitted
to intensive care after an acute injury.
Paediatric palliative care is characterised by a
heterogeneous range of conditions and a higher
proportion of non-cancer diagnoses than adult
palliative care. Palliative care for children and
adolescents can be summarised in four
categories, based on a guide to the development
of children’s palliative care services produced by
the Association for Children’s Palliative Care
(ACT) and the Royal College of Paediatrics and
Child Health in the UK.45
Group 1: life-threatening conditions for
which curative treatment may be feasible but
can fail, where access to palliative care
services may be necessary alongside attempts
at curative treatment and/or if treatment fails.
Group 2: conditions, such as cystic fibrosis,
where premature death is inevitable, where
there may be long periods of intensive
treatment aimed at prolonging life and
allowing participation in normal activities.
Group 3: progressive conditions without
curative treatment options, where treatment
is exclusively palliative and may commonly
extend over many years; for example, Batten
disease and muscular dystrophy.
Group 4: irreversible but non-progressive
conditions with complex healthcare needs,
leading to complications and likelihood of
premature death. Examples include severe
cerebral palsy and multiple disabilities
following brain or spinal cord insult.
Specific paediatric palliative care services
for inpatient treatment and home care should
be implemented. A full range of clinical and
educational resources must be available for
the child and family, in a format that is
appropriate to age and to cognitive and
educational ability.44
The document on standards for paediatric
palliative care in Europe prepared by the
Steering Committee of the EAPC Task Force on
Palliative Care for Children and Adolescents
(IMPaCCT) reveals that palliative care services
are insufficiently available for children and
their families.44 For example, a lack of
community resources enabling families to care
for their child at home has been noticed, as well
as a shortage of services for respite care.
The family home should remain the
centre of caring whenever possible. Every
family should have access to a multi-
disciplinary, holistic paediatric palliative
care team at home.44
The bold type in this text highlights the recommendations
made by the EAPC. Part 2 of this EAPC White Paper will be
published in the European Journal of Palliative Care 17.1.
Acknowledgements
The research work was supported by an unrestricted grant from the
Department of Palliative Medicine of the RWTH Aachen University
(Germany). The manuscript was prepared by Saskia Jünger. We would
like to thank the experts who invested time and effort to review the
manuscript: Franco De Conno, Carl-Johan Fürst, Geoffrey Hanks, Irene
Higginson, Stein Kaasa, Phil Larkin and Friedemann Nauck. We would
also like to thank the Boards of Directors of the national associations
for their dedicated participation in the Delphi procedure. Without
their engagement and support, it would not have been possible to
develop these recommendations so rapidly.
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Lukas Radbruch, European Association for Palliative
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President, and the Board of Directors of the EAPC
(Michaela Bercovitch, Augusto Caraceni, Tine De
Vlieger, Pam Firth, Katalin Hegedus, Maria Nabal,
André Rhebergen, Esther Schmidlin, Per Sjøgren, Carol
Tishelman, Chantal Wood, and Honorary Director
Franco De Conno)
Graded system of palliative care services*
Palliative care
Palliative care Specialist support Specialist
approach for general palliative care palliative care
Acute care Hospital
Long-term careNursing home,
residential home
Home careGeneral practitioners,
community nursing
teams
*Adapted from: Nemeth C, Rottenhofer I. Abgestufte Hospiz- und Palliativversorgung in Österreich. Wien: Österreichisches Bundesinstitut für Gesundheitswesen, 2004
Hospital palliative care support team Palliative care unit
Volunteer hospice Inpatient hospice
service Home palliative care teams Home palliative
care teams,
day-care centre
Main area of care provision for palliative care, supportive care and end-of-life
care (using a narrow definition of end-of-life care)
Main area of care provision for palliative care, supportive care and end-of-life
care (using an extended definition of end-of-life care)
Supportive care
(for cancer patients)
Supportive care
(for cancer patients)
Patient distress/
complexity of
symptoms or
problems
Years Months Weeks Days
Disease trajectory/life expectancy
Palliative care End-of-
life care
Death
Supportive care
Supportive care
Supportive care
Supportive care
Palliative care
End-of-life care
Years Months Weeks Days Death
Disease trajectory/life expectancy
Non-cancer
Cancer
... This is particularly relevant for children living with life-threatening or life-limiting conditions and their families. Across countries and due to different cultural background different terms are used to describe holistic, interdisciplinary, family centred care for children with serious-and/or lifethreatening diseases [15,16]. Differences in infrastructures-and delivery of health-and social care services, might as well explain differences in understanding of the concept of palliative care [13,17]. ...
... However, a new consensus-based definition of PC defines it as 'the active holistic care of individuals across all ages with serious, health-related suffering […] which cannot be relieved without medical intervention, [and] which compromises physical, social, spiritual, and/or emotional functioning' [13]. By presenting the process of achieving consensus, the authors [15] demonstrated the breadth of healthcare professionals' (HCPs') understanding of the term PC, which is often used interchangeably with hospice care, end-of-life care and terminal care [15]. ...
... However, a new consensus-based definition of PC defines it as 'the active holistic care of individuals across all ages with serious, health-related suffering […] which cannot be relieved without medical intervention, [and] which compromises physical, social, spiritual, and/or emotional functioning' [13]. By presenting the process of achieving consensus, the authors [15] demonstrated the breadth of healthcare professionals' (HCPs') understanding of the term PC, which is often used interchangeably with hospice care, end-of-life care and terminal care [15]. ...
Article
Full-text available
Background The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. Methods We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. Results The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme “A frightening concept that evokes negative emotions,” contains categories to explore the meaning, named “An unfamiliar and not meaningful concept, “A concept still associated with death and dying” and “Healthcare professionals’ responsibility for introducing and using the concept and, to obtain a common meaning.” The second theme was named “A broad and complementary concept,” containing the categories “Total care for the child and the family,” “Making room for life and death at the same time” and “The meaning of alleviation and palliative care.” Conclusions The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child’s family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.
... Germany [2]. In the German context, outpatient PC is commonly separated into generalist and specialist outpatient PC [3,4]. Generalist outpatient PC for patients in the community is mostly provided for patients with a relatively low symptom intensity [3]. ...
... In the German context, outpatient PC is commonly separated into generalist and specialist outpatient PC [3,4]. Generalist outpatient PC for patients in the community is mostly provided for patients with a relatively low symptom intensity [3]. Specialist outpatient PC is usually provided by interdisciplinary teams for patients with higher symptom burden and complexity [4]. ...
... Specialist outpatient PC is usually provided by interdisciplinary teams for patients with higher symptom burden and complexity [4]. The vast majority of people at the end of life can be cared for within the framework of generalist outpatient PC, which is typically provided by general practitioners (GPs) [3]. Thus, GPs play a key role in outpatient PC and end-of-life care (EoLC) [5,6]. ...
Article
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Background General practitioners (GPs) play a crucial role in the provision of end-of-life care (EoLC). The present study aimed at comparing the quality of GPs’ EoLC before and after an intervention involving a clinical decision aid and a public campaign. Methods The study was part of the larger interventional study ‘Optimal care at the end of life’ (OPAL) (Innovation Fund, Grant No. 01VSF17028). The intervention lasted 12 months and comprised two components: (1) implementation of the Supportive and Palliative Care Indicators Tool (SPICT-DE™) in general practice and (2) a public campaign in two German counties to inform and connect regional health care providers and stakeholders in EoLC. Participating GPs completed the General Practice End of Life Care Index (GP-EoLC-I) pre- (t0) and post- (t1) intervention. The GP-EoLC-I (25 items, score range: 14–40) is a self-assessment questionnaire that measures the quality of GPs’ EoLC. It includes two subscales: practice organisation and clinical practice. Data were analysed descriptively, and a paired t-test was applied for the pre–post comparison. Results Forty-five GPs (female: 29%, median age: 57 years) from 33 general practices participated in the intervention and took part in the survey at both times of measurement (t0 and t1). The mean GP-EoLC-I score (t0 = 27.9; t1 = 29.8) increased significantly by 1.9 points between t0 and t1 (t(44) = − 3.0; p = 0.005). Scores on the practice organisation subscale (t0 = 6.9; t1 = 7.6) remained almost similar (t(44) = -2.0; p = 0.057), whereas those of the clinical practice subscale (t0 = 21.0; t1 = 22.2) changed significantly between t0 and t1 (t(44) = -2.6; p = 0.011). In particular, items regarding the record of care plans, patients’ preferred place of care at the end of life and patients’ preferred place of death, as well as the routine documentation of impending death, changed positively. Conclusions GPs’ self-assessed quality of EoLC seemed to improve after a regional intervention that involved both the implementation of the SPICT-DE™ in daily practice and a public campaign. In particular, improvement related to the domains of care planning and documentation. Trial registration The study was registered in the German Clinical Trials Register (DRKS00015108; 22/01/2019).
... Globally, the need for palliative care is increasing, but not everyone needing competent palliative care actually receives it [11]. Most patients with life limiting conditions including cancer and other chronic diseases will need palliative care during the trajectory of illness [12]. Palliative care aims to prevent and relieve suffering by early identification, assessment and treatment of pain and other problems. ...
... In addition, it aims to improve quality of life for both patients with life threatening illness and their families [13]. Most patients with life limiting conditions including cancer and other chronic diseases will experience physical, psychosocial and spiritual suffering and will need an interprofessional approach to alleviate suffering [12]. Interprofessional collaboration is considered necessary to address patient's complex palliative care needs [14]. ...
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Background The role of the resource nurse aims at bridging the gap between the specialist nurses and the nurses who work in non-specialist wards. The role is established internationally and used in a wide area of clinical settings. The resource nurse is promoting evidence-based practice. Patients with life limiting conditions including cancer and other chronic diseases will likely need palliative care during the trajectory of illness. Due to the complexity of palliative care, both interprofessional help and cooperation between levels of healthcare are considered necessary. Aim The aim of this study was to explore the perceptions and experiences related to the role of the resource nurse in palliative care in the setting of home health care services and hospitals in Norway, from the perspectives of the resource nurses and the ward nurses. Design The study has an explorative design with a qualitative approach. Methods Eight individual interviews were conducted. Audiotaped interview material was transcribed verbatim and the data were analysed using systematic text condensation. The encoded data material provided the basis for writing analytical texts that in turn resulted in meaningful descriptions of the different categories. Results Four resource nurses and four ward nurses participated in individual interviews. Analysis of the data yielded three categories: 1. Expectations of better competence in the ward. 2. Expectations of better cooperation between professions and different levels of healthcare services. 3. Improvements and hindrances. Conclusion The resource nurse role is underutilized due to heavy workload and inefficient organization of care. Improvements such as sufficient time resources, support from the ward nurse and cooperation with staff nurses, the resource nurses’ role could contribute to increased competence and cooperation interprofessionally and between levels of healthcare.
... 3. Specialist palliative care, refers to a level where the main activity in the professional practice is the provision of palliative care, such as specialist palliative care units and hospices. (Radbruch & Payne, 2009;Radbruch & Payne, 2010.) The Council of Europe highlighted in 2018 that palliative care is still not appropriately provided in Europe (European Council, 2018). ...
Thesis
The main aim of this study was to describe the palliative care (PC) nursing competencies required from nurses on different PC levels and to examine nursing students’ views of PC education. The study consisted of three phases: (I) an integrative systematic review (sub-study I), (II) a descriptive qualitative study (sub-study II) and (III) a cross-sectional survey (sub-studies III-IV). Sub-study I included 21 studies (n=7470 participants) from five databases. Based on a review, using thematic analysis, PC competencies merged from the data, namely collaboration, communication, cultural, clinical, psychosocial, spiritual, ethico-legal and leadership competence. A research gap of PC competencies required in different levels of PC provision was identified. In qualitative sub-study II, multidisciplinary groups of professionals (n=222) defined the PC nursing competencies required in different levels of PC. The competencies required in the basic level consisted of many competencies such as symptom management, supporting and encounters competencies. The competencies required in the specialist level included competencies such as maintaining expertise, advanced symptom management as also research and development competencies. In quantitative sub-study III, final year nursing students (n=1331) responded to a questionnaire and assessed the coverage of PC content in their education and their self-assessed competence of the subject. The students assessed that education on mental symptoms, existential issues and multicultural aspects were covered incompletely. Over half of the students wanted more education on pharmacological and non-pharmacological pain management. Almost all students considered PC as a useful subject, but only about half of them assessed their competence within PC as sufficient. In qualitative sub-study IV, final year nursing students (n=766) responded to the open-ended question in the survey and described their views of palliative care education. Based on a contents analysis three unifying categories were identified, 1) development needs and views of PC education, 2) the preferred types of PC education, and 3) factors that promote or hinder PC learning. In conclusion, nurses need a wide range of competencies to provide PC. Nursing students consider PC as a useful subject, but still addressed the need to further develop the education on the subject.
... In Germany, just as in other countries, specialised outpatient palliative care (SOPC) is available for patients with life-limiting diseases and complex needs, who would prefer to receive treatment in an outpatient setting [1]. Multidisciplinary teams care for patients at their places of residence, e.g. at their homes, in order to promote patients' self-determination and quality of life [2]. ...
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Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members ( n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19 th , 2017, German Clinical Trials Register DRKS-ID: DRKS00012421 .
... As guidelines by the European Association for Palliative Care state: '…the complexity of specialist palliative care can only be met by continuous communication and collaboration between the different professions and disciplines in order to provide physical, psychological, social and spiritual support' (Radbruch and Payne, p. 284). 19 Integrating the spectrum of expertise of different individuals into the palliative care plan increases the likelihood that patients are managed in a holistic manner, and it is each professional's individual expertise that together enables the broad spectrum of patient welfare. 79 Future research should therefore aim to explore in more detail what role allied and other types of healthcare professionals can have in the decision-making process. ...
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Objective To summarise evidence on how multidisciplinary team (MDTs) make decisions about identification of imminently dying patients. Design Scoping review. Setting Any clinical setting providing care for imminently dying patients, excluding studies conducted solely in acute care settings. Data sources The databases AMED, CINAHL, Embase, MEDLINE, PsychINFO and Web of Science were searched from inception to May 2021. Included studies presented original study data written in English and reported on the process or content of MDT discussions about identifying imminently dying adult patients. Results 40 studies were included in the review. Studies were primarily conducted using interviews and qualitative analysis of themes. MDT members involved in decision-making were usually doctors and nurses. Some decisions focused on professionals recognising that patients were dying, other decisions focused on initiating specific end-of-life care pathways or clarifying care goals. Most decisions provided evidence for a partial collaborative approach, with information-sharing being more common than joint decision-making. Issues with decision-making included disagreement between staff members and the fact that doctors were often regarded as final or sole decision-makers. Conclusions Prognostic decision-making was often not the main focus of included studies. Based on review findings, research explicitly focusing on MDT prognostication by analysing team discussions is needed. The role of allied and other types of healthcare professionals in prognostication needs further investigation as well. A focus on specialist palliative care settings is also necessary.
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Background: Demographic trends show an increasing number of elderly people and thus a growing need for palliative care (PC). Such care is increasingly being provided by long-term care (LTC) facilities. The present study aimed at exploring PC indicators of residents at LTC facilities belonging to a non-profit provider in Lower Saxony, Germany, in order to identify potential improvements. Methods: A descriptive cross-sectional study was conducted, drawing on routine nursing chart data. Structural data from 16 participating LTC facilities and the care data of all residents who died in 2019 (N = 471) were collected anonymously between March and May 2020. Based on key literature on quality indicators of PC in LTC facilities in Germany, a structured survey was developed by a multidisciplinary research team. The descriptive, comparative and inferential data analysis was conducted using the SPSS software package. Results: In total, the complete records of 363 (77%) residents who died in the participating LTC facilities in 2019 were retrieved. The records reflected that 45% of the residents had been hospitalized at least once during the last 6 months of their lives, and 19% had died in hospital. Advance care planning (ACP) consultation was offered to 168 (46%) residents, and 64 (38%) declined this offer. A written advance directive was available for 47% of the residents. A specialized PC team and hospice service volunteers were involved in caring for 6% and 14% of the residents, respectively. Cancer patients received support from external services significantly more frequently (p < .001) than did non-cancer patients. Differences emerged in the distribution of PC indicators between LTC facilities. Facilities that have more PC trained staff offered more ACP, supported by more specialized PC teams and hospice services, and had fewer hospitalizations. In addition, more volunteer hospice services were offered in urban facilities. Conclusions: Overall, a rather positive picture of PC in participating LTC facilities in Germany emerged, although there were differences in the expression of certain indicators between facilities. ACP consultation, volunteer hospice services, and hospital admissions appeared to be superior in LTC facilities with more trained PC staff. Therefore, PC training for staff should be further promoted.
Article
Patients with irreversible malignant and non-malignant diseases have comparable mortality rates, symptom burdens, and quality of life issues; however, non-cancer patients seldom receive palliative care (PC) or receive it late in their disease trajectory. To explore the characteristics of non-cancer patients receiving PC in northern Italy, as well as the features and outcomes of their care, we retrospectively analyzed the charts of all non-cancer patients initiating PC regimens during 2019 in three publicly funded PC departments in Italy’s populous Lombardy region. We recorded the baseline variables (including data collected with the NECPAL CCOMS-ICO-derived questionnaire used since 2018 to evaluate all admissions to the region’s PC network), as well as treatment features (setting and duration) and outcomes (including time and setting of death). Of the 2043 patients admitted in 2019, only 12% (243 patients—131 females; mean age 83.5 years) had non-oncological primary diagnoses (mainly dementia [n = 78], heart disease [n = 55], and lung disease [n = 30]). All 243 had Karnofsky performance statuses ≤ 40% (10–20% in 64%); most (82%) were malnourished, 92% had ≥2 comorbidities, and 61% reported 2–3 severe symptoms (pain, dyspnea, and fatigue). Fifteen withdrew or were discharged from the study PCN; the other 228 remained in the PCN and died in hospice (n = 133), at home (n = 9), or after family-requested transfer to an emergency department (n = 1). Most deaths (172/228, 75%) occurred <3 weeks after PC initiation. These findings indicate that the PCN network we studied cares for few patients with life-limiting non-malignant diseases. Those admitted have advanced-stage illness, heavy symptom burdens, low performance statuses, and poor survival. Additional efforts are needed to improve PCN accessibility for non-cancer patients.
Article
Background: The principles of palliative care were developed in hospices and specialised palliative care units and have not been sufficiently adapted to and evaluated in nursing homes. Therefore, an educational intervention from an interprofessional education perspective was performed within the project Implementation of Knowledge-Based Palliative Care in Nursing Homes. The aim of this study was to evaluate professionals' experience of palliative care delivery before and after the educational intervention. Methods: The educational intervention for nursing home professionals consisted of five 2-h seminars over 6 months at 20 nursing homes. The intervention and control groups consisted of 129 and 160 professionals from 30 nursing homes respectively. The questionnaire 'Your experience of palliative care' was completed 1 month before (baseline) and after (follow-up) the intervention. Descriptive and inferential statistics were calculated. Results: The positive effects at follow-up concerned the use of a valid scale for grading symptoms, attendance to the needs of next of kin (including bereavement support), documentation of older persons' wishes regarding place to die and conversations about their transition to palliative care and about how they were treated. Conclusions: This study demonstrates a promising interprofessional educational model. However, the paucity of improvements brought to light at follow-up indicates a need for research directed towards a revision of this model. Supervision of professionals during palliative care delivery is one suggestion for change.
Book
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The main aim of this study is to provide an updated, reliable and comprehensive analysis on the development of palliative care within each European country, in order to generate and disseminate an ‘evidence base’ of clear and accessible research-based information concerning the current provision of the discipline across the WHO European region. It is hoped that this overview of palliative care provision, achievements and challenges will provide governments and policymakers with a new understanding of the development of programmes to promote palliative care within the WHO European region and that this will, in turn, have a positive impact upon providers of palliative care services in a direct, practical way through an improvement in the development of policy and practice and future service design. The objectives of the project are: • To provide a comprehensive analysis of the development of palliative care in the WHO European region in a manner relevant to the EAPC; to intergovernmental organisations and to national and regional governments. • To explore the current organisation of hospice and palliative care in Europe considering political and social issues; healthcare policies, and the availability of palliative care resources countrywide. • To facilitate access to information and communication between hospice and palliative care associations and societies that operate across the WHO European region. • To aid the identification of key persons who have studied the development of hospice and palliative care in their own settings and who may provide country specific data to assist policy makers, planners and professional associations. • To promote the development of palliative care across the WHO European region.
Book
This book offers an overview of key aspects of palliative care, presented through a resilience perspective. Why do some patients and families break down while others surmount the challenges facing them? What interventions strengthen individual, family and community coping? The book aims to facilitate change with people facing the crisis of death, dying, and bereavement. Much of the existing literature has focused on risk, problems, and vulnerability; the emerging concept of resilience focuses on strengths and possibilities. The 'total pain'/'total care' approach pioneered by Dame Cicely Saunders and St Christopher's Hospice now needs reinterpreting in the light of changing contexts and challenges. The realities of demographic change and resource-constrained health and social care environments have generated an increasingly risk focused approach to service delivery. A narrowly medicalised approach has inevitable limitations: professional care alone will be unable to meet need and demand in the face of ageing populations, changing patterns of illness and the need for equity. The resilience approach offers a counterbalance that harnesses the strengths of individuals and the communities in which they live and in which most of their dying will take place. Resilience thinking emphasises the importance of public health and creates a partnership between patients, professionals, and community structures, seeking to build community capacity and to deliver a preventive health care that will leave future generations less afraid of the dying and bereavement that will confront all of us.
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The needs of children and families living with life-limiting and life-threatening illness are similar across Europe. Meeting these needs requires a comprehensive and integrative approach from a skilled multidisciplinary team. It is essential that the core standards for paediatric palliative care recommended in this document now be implemented across Europe.
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Palliative care might be described as a movement within the healthcare systems of many countries which has a strong voluntary backing in the wider community. Much of the developments in Australia have taken place in the metropolitan areas with 'cinderella' services attempting to make provision in rural and remote parts of the country. This paper describes and reviews an action research project designed to provide a support and learning network for palliative care workers in a country area of South Australia, using the telephone and interactive video conference facilities for communication purposes. The lessons of the project have applicability for other healthcare providers in rural and remote parts of Australia.