Better Palliative Care For Older People
Better Palliative Care for Older People
The European
The Open Society
King’s College
The European
Association of
Institute Network
London
Institute of
Palliative Care
Public Health
Oncology
Programme
World Health Organization
Regional Office for Europe
Scherfigsvej 8,
DK-2100 Copenhagen Ø,
Denmark
Telephone: +45 39 17 17 17
Fax: +45 39 17 18 18
E-mail: postmaster@euro.who.int
Web site: www.euro.who.int
FONDAZIONE FLORIANI
ABSTRACT
Most deaths in European and other developed countries occur in people aged
over 65, but relatively little health policy concerns their needs in the last years of
life. As life expectancy increases, the number of people living to older ages is also
increasing in many countries. At the same time, the relative number of people of
working age is declining and the age of potential caregivers is increasing.
Palliative care is therefore of growing public health importance. Older people have
traditionally received less palliative care than younger people and services have
focused on cancer. This booklet is part of the WHO Regional Office for Europe’s
work to present evidence for health policy- and decision-makers in a clear and
understandable form. It presents the needs of older people, the different trajec-
tories of illnesses they suffer, evidence of underassessment of pain and other
symptoms, their need to be involved in decision-making, evidence for effective
palliative care solutions, and issues for the future. A companion booklet entitled
Palliative care - the solid facts considers how to improve services and educate
professionals and the public.
Acknowledgements for photographs
Front cover: Bicycle at a cathedral by Professor Joan Teno, Brown University, USA
We thank the following for submitting other photographs included throughout the booklet:
Paolo Barone, Militello in Val di Catania (CT), Italy
Dr Elizabeth Davies, King’s College London, UK
Mr Peter Higginson, UK
Professor Anica Jusic, Regional Hospice Centre Volunteer Service, Croatian
Society for Hospice Palliative Care and Croatian Association of Hospice Friends
Macmillan Cancer Relief, London, UK
Professor Joan Teno, Brown University, USA
Davide Zinetti, Milan, Italy
Lithographic, printing and page make up
Tipolitografia Trabella Srl - Milan, Italy
Better Palliative Care
for Older People
Edited by
Elizabeth Davies and Irene J Higginson
Supported by the Floriani Foundation
With the collaboration of:
The European Association
The Open Society Institute
King’s College London
The European Institute
of Palliative Care
Network Public Health Programme
of Oncology
OLDER PEOPLE
KEYWORDS
GERIATRIC MEDICINE
END OF LIFE CARE
DEATH AND DYING
PALLIATIVE CARE
PUBLIC HEALTH
LIFE-THREATENING ILLNESS
SERIOUS CHRONIC ILLNESS
SUPPORTIVE CARE
TERMINAL CARE
ISBN 92 890 1092 4
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© World Health Organization 2004
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decisions or the stated policy of the World Health Organization.
CONTENTS
Contributors
5
Foreword
6
Preface
7
Introduction
8
1.
Why palliative care for older people is a public health priority
10
Ageing populations
The changing epidemiology of disease
The increasing age of caregivers
Financial implications for health care systems
The range of settings for care
2.
Palliative care: the needs and rights of older people and their families
14
Palliative care
The needs of older people at the end of life
The needs of caregivers
A new way of looking at palliative care
Autonomy and choice
Preferences for place of care and death
3.
Evidence of underassessment and undertreatment
20
Underassessment of pain
Lack of information and involvement in decision-making
Lack of home care
Lack of access to specialist services
Lack of palliative care within nursing and residential homes
4.
Evidence of effective care solutions
26
Palliative care skills of individual health professionals
Providing holistic care
Coordinating care across different settings
Supporting families and caregivers
Specialist palliative care
Developing palliative care services for non-cancer patients
Advanced care planning
Generalizability of findings
5.
The challenge for health policy- and decision-makers
32
The challenge
Evidence for effective care solutions
Barriers to overcome
Potential solutions: a public health policy approach
Ensuring palliative care is integral to health services
Improving the application of palliative care skills across all settings
Identifying gaps in the research base
6.
Recommendations
36
3
The World Health Organization was established in
WHO Centre for Urban Health
1948 as a specialized agency of the United Nations
This publication is an initiative of the Centre for
serving as the directing and coordinating authority
Urban Health, at the WHO Regional Office for
for international health matters and public health.
Europe. The technical focus of the work of the
One of WHO’s constitutional functions is to provide
Centre is on developing tools and resource materi-
objective and reliable information and advice in the
als in the areas of health policy, integrated planning
field of human health, a responsibility that it fulfils
for health and sustainable development, urban
in part through its publications programmes.
planning, governance and social support. The
Through its publications, the Organization seeks to
Centre is responsible for the Healthy Cities and
support national health strategies and address the
urban governance programme.
most pressing public health concerns.
The WHO regional Office for Europe is one of six
regional offices throughout the world, each with its
own programme geared to the particular health
problems of the countries it serves. The European
Region embraces some 870 million people living in
an area stretching from Greenland in the north and
the Mediterranean in the south to the Pacific
shores of the Russian Federation. The European
programme of WHO therefore concentrates both
on the problems associated with industrial and
post-industrial society and on those faced by the
emerging democracies of central and eastern
Europe and the former USSR.
To ensure the widest possible availability of author-
itative information and guidance on health matters,
WHO secures broad international distribution of its
publications and encourages their translation and
adaptation. By helping to promote and protect
health and prevent and control disease, WHO’s
books contribute to achieving the Organization’s
principal objective – the attainment by all people of
the highest possible level of health.
4
CONTRIBUTORS
Professor Janet Askham
Dr Karl Lorenz
King’s College London,
Veterans Administration Health Care System,
London, United Kingdom
Los Angeles, CA, USA
Dr Elizabeth Davies
Dr Joanne Lynn
King’s College London,
Washington Home Center for
London, United Kingdom
Palliative Care Studies and RAND Health,
Washington, DC, USA
Dr Marilène Filbet
Hospices Civils, CHU de Lyon,
Professor Martin McKee
Lyon, France
London School of Hygiene and Tropical Medicine,
London, United Kingdom
Dr Kathleen M Foley
Memorial Sloan-Kettering Cancer Center,
Professor Charles-Henri Rapin
New York, NY, USA
Poliger, Hôpitaux Universitaires de Genéve
Geneva, Switzerland
Professor Giovanni Gambassi
Centro Medicina Invecchiamento
Professor Miel Ribbe
Università Cattolica del Sacro Cuore
VU University Medical Centre,
Rome, Italy
Amsterdam, Netherlands
Professor Irene J Higginson
Dr Jordi Roca
King’s College London,
Hospital de la Santa Creu,
London, United Kingdom
Barcelona, Spain
Professor Claude Jasmin
Professor Joan Teno
Hôpital Paul Brousse,
Brown Medical School,
Villejuif, France
Providence, RI, USA
Professor Stein Kaasa
Professor Vittorio Ventafridda
University Hospital of Trondheim,
European Institute of Oncology
Trondheim, Norway
(WHO collaborating centre)
and Scientific Director, Floriani Foundation
Professor Lalit Kalra
King’s College London,
London, United Kingdom
5
FOREWORD
The aim of this booklet is to incorporate pallia-
Better palliative care for older people express-
tive care for serious chronic progressive ill-
es a European viewpoint, but may reflect rele-
nesses within ageing policies, and to promote
vant issues in other parts of the world. It tar-
better care towards the end of life. A consider-
gets policy- and decision-makers within gov-
able body of evidence shows that older peo-
ernment health and social care, the non-
ple suffer unnecessarily, owing to widespread
governmental, academic and private sectors,
underassessment and undertreatment of their
and health professionals working with older
problems and lack of access to palliative care.
people. All these groups will need to work to
As a group, older people have many unmet
integrate palliative care more widely across
needs. They experience multiple problems
health services, and policy-makers need to be
and disabilities and require more complex
aware of the proven benefits of palliative care.
packages of treatment and social care. This
The booklet aims to provide information that
raises many issues for their families and for
will help with this task. It makes recommenda-
the professionals who care for them. High-
tions for health policy- and decision-makers,
quality care, matching the standards now pro-
health professionals and those funding
vided by inpatient hospice and palliative care
research on how services may be developed
services for people with cancer, must be
and improved.
developed for older people with equal needs.
I should like to express my thanks to The
New policies and methods of improving care
Floriani Foundation and to its Scientific
must reach out and influence the experience
Director Dr Vittorio Ventafridda, without whose
of older people in hospitals, in their own
financial support and tremendous enthusiasm
homes and in nursing and residential homes
this project would not have been realized. I
within the community. This booklet and its
should also like to thank the Open Society
companion volume, Palliative care – the solid
Institute for its initial financial contribution to
facts, aim to provide policy-makers and others
this project. My deep appreciation goes to all
with comprehensive facts about the multiple
the experts who contributed to the preparation
facets of palliative care and related services.
of the booklet, as well as to the European
This booklet defines what is known about the
Association of Palliative Care for its technical
needs of older people, using evidence from
assistance. Finally, a special word of thanks is
epidemiology, social studies and health serv-
due to Professor Irene Higginson and Dr
ices research. During the review, it became
Elizabeth Davies of King’s College London for
clear that the evidence we have on palliative
the effective way they drove and coordinated
care is incomplete. There are differences in
the whole preparation process and for their
what can be offered across Europe. For some
excellent editorial work.
aspects more detailed and robust information
would be desirable, but it is quite simply not
Dr Agis D. Tsouros
available. This booklet provides the most solid
Head, Centre for Urban Health
information that is available at the moment.
WHO Regional Office for Europe
6
PREFACE
Across the world – and particularly in devel-
ing throughout health care systems within
oped countries – the number of older people is
hospitals and nursing homes and in people’s
increasing, raising many pressing issues for
own homes. We know how to improve care,
health policy as well as important financial and
and we must now integrate that knowledge
ethical questions. Changes in the way families
more clearly into everyday practice. The care
live and work can leave older people vulnera-
of older people facing their last days must
ble and affect their sense of belonging within
focus on quality of life rather than on simply
society. In spite of existing welfare pro-
prolonging life itself.
grammes, very often the real needs of older
If decision-makers take into account and
people – for pain relief, to feel involved and lis-
apply just some of the recommendations in
tened to and to enjoy a certain degree of
this booklet, older people and their families
autonomy – are not taken into consideration.
and those involved in this project will be great-
Pain, physical suffering, helplessness, loneli-
ly rewarded.
ness and marginalization can too often
become part of everyday experience in the
Professor Vittorio Ventafridda
final phase of life.
European Institute of Oncology
This booklet from the Regional Office for
(WHO collaborating centre)
Europe of the World Health Organization aris-
and Scientific Director,
es from a project aimed at increasing aware-
Floriani Foundation
ness among policy- and decision-makers in
health care about the needs of older people
and how to promote innovative programmes
of care. The contributors, recognized for their
work in this area, were asked by Professor
Irene Higginson and Dr Elizabeth Davies to do
their best to set out the evidence of this neg-
lected problem in our societies and of effective
solutions.
Up to now, palliative care has mainly con-
cerned itself with patients suffering from can-
cer, and here it has been successful in reduc-
ing suffering towards the end of life. It is now
time for palliative care to be part of the overall
health policy for older people and to be an
integral part of the services they receive. Such
programmes need to be based on the intro-
duction of palliative care delivered by well
educated professionals and caregivers work-
7
INTRODUCTION
It is no surprise that most deaths in European
will therefore need some kind of help with
countries occur in people aged over 65, but it
problems caused by these diseases towards
is disconcerting to find little health information
the end of life, and the population of people
or policy concerned with the needs of older
needing care is now simply much older.
people in the last years of life or with the qual-
Traditionally, high quality care at the end of life
ity of care they receive. Given the changes that
has mainly been provided for cancer patients
population ageing will bring for societies, the
in inpatient hospices, but this kind of care now
relative neglect of palliative care in health pol-
needs to be provided for those with a wider
icy is of concern.
range of diseases. Older people are more like-
As life expectancy increases, more people live
ly to have highly complex problems and dis-
past 65 years of age and into very old age,
abilities, and need packages of care that
thus dramatically increasing the numbers of
require partnership and collaboration between
older people. Patterns of disease in the last
different groups and across many settings.
years of life are also changing. More people
This raises many issues for the professionals
are dying from serious chronic diseases rather
caring for them, and requires the expertise of
than from acute illnesses. Many more people
both geriatric and palliative care in finding
ways of supporting older
people and their families.
Countries need to develop
health care services to meet
the medical and social
needs of this group.
Effective care must reach
into the hospital, into peo-
ple’s homes and into nurs-
ing and residential homes
within the community.
The recent WHO report
Active ageing: a policy
framework (1)
considers
many of the challenges that
population ageing raises for
policy- and decision-mak-
ers, and sets out some of
the responses required to
maintain the health, partici-
pation and security of older
people in our societies. The
current document is
8
designed to be part of that response. It sets
and treatment of older peoples’ problems and
out evidence for policies for palliative care for
their lack of access to palliative care. Part 4
older people, arguments for integrating pallia-
summarizes evidence for effective care solu-
tive care across health services, and models
tions, including better pain relief, communica-
for effective care solutions that will help with
tion and organization of services such as
the task. A companion booklet, Palliative care
home care and specialist services. Part 5 dis-
– the solid facts (2) considers why palliative
cusses the key challenges for policy- and
care is a public health issue.
decision-makers in the governmental, non-
Part I of the document describes the implica-
governmental, academic and independent
tions of population ageing for palliative care
sectors, and finally Part 6 provides recom-
needs and why these are a public health prior-
mendations to improve care and so provide
ity, while Part 2 describes the needs and rights
the security and dignity older people need
of older people and their families. Part 3
towards the end of life.
describes the widespread underassessment
References
1. Active ageing: a policy framework.
2. Palliative care – the solid facts.
Geneva, World Health Organization,
Copenhagen, WHO Regional
2002 (document
Office for Europe, 2004.
WHO/NMH/NPH/02.8)
(www.who.int/hpr/ageing/Active
AgeingPolicyFrame.pdf,
accessed 22 July 2003).
9
1.
WHY PALLIATIVE CARE FOR OLDER PEOPLE
IS A PUBLIC HEALTH PRIORITY
Ageing populations
40
World
Populations in European and other developed
35
More developed regions
Less developed regions
countries are ageing (Fig. 1) (1). Improvements
30
in public health, including the prevention and
25
treatment of infectious diseases, and other
20
innovations have greatly reduced the propor-
centage
Per
tion of deaths occurring in childhood and early
15
adulthood. More people are now living longer
10
and the proportion of those living beyond 60
5
years has increased, and will increase further
0
over the next 20 years (Table 1) (2). The pro-
1950
1975
2000
2025
2050
portions of older people will vary in different
Source: World population ageing 1950–2050 (1).
countries. In Japan, for example, more than
Fig. 1 - Population ageing: population aged 60 and over
one in four will be over 65 years of age com-
pared to one in six in the United States.
4% of the population is now this old (3). It is
predicted that other countries will follow a
Table 1 - Percentage of the population aged over 60 in 2000
similar though less rapid trend. Data on deaths
and predictions for 2020
in England and Wales, for example, show a
Year
Country
dramatic increase in proportion of deaths now
2000
2020
occurring at much older ages (Fig. 2).
Italy
24
31
Japan
23
34
Germany
23
29
Greece
23
29
Croatia
22
26
Spain
21
27
United Kingdom
21
26
France
21
27
Switzerland
21
32
Norway
20
26
Hungary
20
26
Slovenia
19
29
United States
16
22
Source: Office of National Statistics (4).
Source: United Nations (3).
Fig. 2 - Distribution of deaths by age group, England and Wales,
After reaching the age of 65, people now live
1911–2000
on average another 12–22 years, with France
Women consistently live longer than men, with
and Japan having the highest life expectan-
some figures suggesting that on average they
cies. The proportion of people living over the
live as much as six years longer, so that near-
age of 80 is also increasing. In France,
ly twice as many women as men live to 80
Germany, Italy, Japan and the United Kingdom,
years of age.
10
It is not yet entirely clear whether
increased longevity is inevitably
accompanied by longer periods of
disability towards the end of life
(6). Some recent findings and pre-
dictions suggest an optimistic pic-
ture, with disability declining in
successive cohorts of people as
they age (7). However, if more peo-
ple live to older ages, and if chron-
ic diseases become more com-
mon with age, then the numbers of people in a
The changing epidemiology of disease
population living with their effects will increase.
As populations age, the pattern of diseases
This means that there will be more people
that people suffer and die from also changes.
needing some form of help towards the end of
Increasingly, more people die as a result of
life. Furthermore, women are more likely to suf-
serious chronic diseases such as heart dis-
fer from several chronic conditions such as
ease, cerebrovascular disease (including
dementia, osteoporosis and arthritis, suggest-
stroke), respiratory disease and cancer (Table
ing that a greater part of their “extra” survival
2) (5). It can be difficult to diagnose with cer-
may be affected by disability (8).
tainty any one disease as the main cause of
death, as many older people suffer from sever-
The increasing age of caregivers
al conditions together that might all contribute
A related aspect of population ageing is a
to death. Dementia is an example of one con-
decrease in the proportion of younger people
dition that is regularly underdiagnosed.
as fertility rates decline. The age of informal
Table 2 - Main predicted causes of death for 2020 and pre-
caregivers, particularly women who have tra-
vious causes in 1990
ditionally been relied on to care for and sup-
Predicted Previous
Disorder
port people towards the end of life, is therefore
ranking 2020 ranking 1990
also increasing. As the proportion of working-
Ischaemic heart disease
1
1
age to older people declines, fewer women
Cerebrovascular disease
(and men) will be able to find the time to pro-
(including stroke)
2
2
vide support and care (Fig. 3). Families have
become smaller, more dispersed and varied,
Chronic obstructive
pulmonary disease
3
6
affected by increased migration, divorce and
external pressures. With few exceptions, fam-
Lower respiratory infections
4
3
ilies want to be able to provide the best care
Lung, trachea and bronchial
they can for their older members. Health care
cancer
5
10
systems, however, vary in the degree to which
Source: Murray & Lopez (5).
they provide the help that caregivers need at
11
life to be prolonged at older ages, and this is
often seen as an extra expense. Recent stud-
ies in the United States, however, have sug-
gested that higher spending is not associated
with higher quality care, better access to care
or better health outcomes or satisfaction with
hospital care (11,12). Interviews with seriously
ill patients also reveal that more than one in
three who would prefer palliative or “comfort”
care believe their medical care is at odds with
their preference. This inconsistency between
Source: Anderson & Hussey (2).
preference and action is associated with high-
er health care costs, but also with increased
Fig. 3 - The proportions of working-age to elderly people in eight
countries, 1960–2020 (used with permission from the Common-
survival at one year (13). It may therefore not
wealth Fund, New York)
be the role of health care to seek a cheap solu-
home or funding for institutional care for peo-
tion to the issues that technology and ageing
ple near the end of life. Some families with
present, but to provide packages of care for
older members needing full-time care will find
people in different situations that properly take
the financial cost and burden unmanageable,
account of their wishes.
and it may be intolerable for older women car-
ing for spouses whom they will outlive (9).
The range of settings for care
In most countries, most older people live at
Financial implications for
home, although countries have different
health care systems
approaches to providing long-term care for
Undoubtedly, the growing numbers of older
older people (Fig. 4).
people will challenge health care systems to
In Australia and Germany, 1 in 15 older people
provide more effective and compassionate
live in institutions, compared to 1 in 20 in the
care towards the end of life. However, popula-
United Kingdom. The lifetime chance of
tion ageing does not necessarily mean that the
receiving such care may be higher (14). For
cost of care for people in the last years of their
example, in the United States around half of
life will eventually overwhelm health service
those living past the age of 80 spend some
funding (10).
time in a nursing home. In the United Kingdom
Health care systems already vary considerably
most funding for inpatient hospice services
in the proportion of their gross national prod-
comes through the charitable sector, while in
uct spent on health care for older people.
the United States such services are funded
International comparisons show no consistent
through federal Medicare benefits. The way in
relationship between this proportion and the
which different health care settings work and
proportion of older people in the country.
the effectiveness of the care they provide
Medical advances have increasingly allowed
inevitably affects what other settings can offer.
12
For example, staff shortages and lack of pal-
liative skills for home care and in nursing
homes may increase hospital admissions for
care at the very end of life.
Developed countries are therefore facing very
similar issues, and can learn from each other
in different areas.
Source: Ribbe et al. (14).
Fig. 4 - Place of residence for people >65 years in four countries
References
1. World population ageing
6. Andrews GR. Promoting health
11. Fisher ES et al. The implications
1950–2050. New York, United
and function in an ageing popula-
of regional variation in Medicare
Nations Population Division,
tion. British Medical Journal,
spending. Part 1. The content,
2002.
2001, 322:728–729.
quality and accessibility of care.
Annals of Internal Medicine,
2. Anderson GF, Hussey PS. Health
7. Manton KG et al. Chronic dis-
2003, 138:273–287.
and population aging: a multina-
ability trends in elderly United
tional comparison. New York,
States populations 1982 – 1994.
12. Fisher ES et al. The implications
Commonwealth Fund, 1999.
Proceedings of the National
of regional variation in Medicare
Academy of Sciences, 1997,
spending. Part 2. Health out-
3. United Nations world population
94:2593–2598.
comes and satisfaction with care.
prospects population database.
Annals of Internal Medicine,
New York, United Nations 8. Mathers CD et al. Healthy life
2003, 138:288–298.
Population Division, 2002
expectancy in 191 countries. Lan-
(http://esa.un.org/unpp/index.as
cet, 2001, 357(9269):1685–1691.
13. Teno JM et al. Medical care
p?panel=1, accessed 22 July
inconsistent with patients’ treat-
9. One final gift. Humanizing the
2003).
ment goals: association with 1-
end of life for women in
year Medicare resource use and
4. Office of National Statistics.
America.
Washington, DC,
survival. Journal of the American
Mortality statistics. General re-
Alliance for Aging Research, 1998
Geriatrics Society,
2002,
view of the Registrar General on
http://www.agingresearch.org/br
50:496–500.
Deaths in England and Wales
ochures/finalgift/welcome.html,
1997, Series DH1, No. 30.
accessed 22 July 2003)
14. Ribbe MW et al. Nursing homes
London, Stationery Office, 1999.
in 10 nations: a comparison
10. Seven deadly myths. Uncovering
between countries and settings.
5. Murray CJL, Lopez AD. Alterna-
the facts about the high cost of
Age and Ageing, 1997, 26 (Suppl.
tive projections of mortality and
the last year of life. Washington,
2):3–12.
disability by causes 1990–2020.
DC, Alliance for Aging Research
Global burden of disease study.
(www.agingresearch.org/brochur
Lancet, 1997, 349:1498–1504.
e s / 7 m y t h s / 7 m y t h s . h t m l ,
accessed 22 July 2003).
13
2.
PALLIATIVE CARE: THE NEEDS AND RIGHTS OF
OLDER PEOPLE AND THEIR FAMILIES
Palliative care
Palliative care was defined by the World
Health Organization in 2002 (1), as:
... 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, physi-
cal, psychosocial and spiritual.
Palliative care provides relief from pain and
other distressing symptoms, affirms life and
regards dying as a normal process, and
intends neither to hasten nor to prolong
death. Palliative care integrates the psycho-
logical and spiritual aspects of patient care,
and offers a support system to help patients
live as actively as possible until death. It also
offers a support system to help the family
cope during the patient’s illness and in their
own bereavement. Using a team approach,
palliative care addresses the needs of
patients and their families, including bereave-
ment counselling if necessary. It enhances
The needs of older people at the end of life
quality of life, and may positively influence the
course of the illness. It is applicable early in
It is no surprise that most deaths in European
the course of the illness with other therapies
and other developed countries occur in people
that are intended to prolong life, such as
aged over 65. None the less, comparatively lit-
chemotherapy or radiation therapy, and
tle research has been carried out on their
includes those investigations needed to bet-
needs for palliative care. Older people very
ter understand and manage distressing clini-
clearly have special needs, because their
cal complications (1,2).
problems are different and often more com-
Palliative care should be offered as needs
plex than those of younger people.
develop and before they become unmanage-
• Older people are more commonly affected
able. Palliative care must not be something
by multiple medical problems of varying
that only specialized palliative care teams,
severity.
palliative care services or hospices offer when
• The cumulative effect of these may be much
other treatment has been withdrawn. It should
greater than any individual disease, and typ-
be an integral part of care and take place in
ically lead to greater impairment and needs
any setting.
for care.
14
Cancer
The term cancer includes many illnesses that
cause varying problems depending on the site
of the body affected. The disease is more
Source: Seale & Cartwright (3).
Fig. 1 - Age at death and prevalence of problems reported for
the year before death
• Older people are at greater risk of adverse
drug reactions and of iatrogenic illness.
• Minor problems may have a greater cumula-
tive psychological impact in older people.
• Problems of acute illness may be superim-
posed on physical or mental impairment,
economic hardship and social isolation.
Source: Lynn & Adamson (4).
The complexity of the problems that older peo-
Fig. 2 - Model of a trajectory of an illness due to cancer
ple have to suffer is revealed by epidemiological
studies in which relatives or key informants are
common with increasing age, and three quar-
asked about the last year of the patient’s life
ters of deaths from cancer occur in people
(Fig. 1). These show, in particular, that mental
aged over 65. The most common cancers
confusion, problems with bladder and bowel
affecting women are breast, lung and colorec-
control, sight and hearing difficulties and dizzi-
tal cancer, while those most commonly affect-
ness all greatly increase with age (3).
ing men are lung, prostate and colorectal can-
The problems that many older people expe-
cer. Breast and prostate cancer have the best
rience in the last year of life are therefore
prognoses, followed by colorectal cancer and
those of great age and its troubles as well
lung cancer. The prognosis for any individual
as those caused by their final illness. All
depends on the extent of the growth at pres-
areas of health care that seek to provide
entation and the response of the tumour to
continuity of care for older people, includ-
treatment, which may include surgery, radio-
ing general practice, geriatric medicine and
therapy and/or chemotherapy. People are not
rehabilitation, have recognized these wider
usually severely restricted in their activity until
needs for many years. Because it is more
the final stages of the illness when the disease
difficult to predict the course of many
stops responding to treatment (Fig. 2), but
chronic diseases affecting older people,
they have many psychological needs and
palliative care should be based on patient
require information and support from the time
and family needs and not on prognosis. The
of diagnosis. In general, studies show that
examples of cancer, heart failure and
patients with cancer want more information,
dementia illustrate this point.
would like to be involved in decision-making,
15
gradual return to, or near to, the previous level
of function (5). Death may follow a gradual
decline or may be sudden during a crisis
(Fig. 3). Although there has been considerable
progress in treating symptoms and crises well,
patients and their families often have difficulty
understanding and managing the complex
drug regimes required (6). People with heart
failure seem to have less formal knowledge of
their diagnosis and prognosis. There appears
to be a lack of open communication from
Source: Lynn & Adamson (4).
health professionals about this, probably
owing in part to the difficulty of prediction and
Fig. 3 - Model of an illness trajectory for organ failure such as
heart failure
an unwillingness to raise the subject (7).
Families also report poor coordination of care
and difficulties in forming a relationship with
any single professional (7). These aspects of
care therefore compare unfavourably to the
information and support available to people
with cancer.
Dementia
Dementia affects 4% of people over the age of
70, increasing to 13% of those over the age of
80 (8). The median length of survival from
diagnosis to death is eight years, and during
Source: Lynn & Adamson (4).
this time there is a progressive deterioration in
Fig. 4 - Model of an illness trajectory for dementia or frailty
ability and awareness (Fig. 4).
and experience better psychosocial adjust-
Common symptoms include mental confu-
ment if palliative care and good communica-
sion, urinary incontinence, pain, low mood,
tion are part of their care from the time of diag-
constipation and loss of appetite. The physical
nosis.
and emotional burden on family members is
well documented, as is their grief as they
Heart failure
slowly lose the person they knew. Many ethi-
Heart failure affects more than one in ten peo-
cal issues are also raised by the care of peo-
ple aged over 70, and the five-year mortality of
ple with dementia who are unable to commu-
80% is worse than for many cancers. The
nicate their wishes (9). Current issues include
course is often one of intermittent exacerba-
the best use of antibiotics in the treatment of
tion of the symptoms of breathlessness and
pneumonia and of feeding tubes for hydration
pain, causing great distress, followed by a
and nutrition. However, less than 1% of
16
in their response and perceptions
about palliative care need to
change. Traditionally, palliative
care has been offered most often
to people suffering from cancer,
partly because the course of this
illness is more predictable and it
is thus easier to recognize and
plan for the needs of patients and
their families. One consequence
patients in inpatient hospices have dementia
of this has been the perception that palliative
as their primary diagnosis (10).
care is relevant only to the last few weeks of
life and can be delivered only by specialized
The needs of caregivers
services (Fig. 5).
Only relatively recently has the role of people
caring for older seriously ill people been fully
appreciated. There is relatively little formal
©
knowledge about their needs, although their
role varies considerably. It may include carry-
ing out intimate tasks such as washing, help-
ing people to dress and go to the toilet, or
heavy tasks such as lifting. This kind of caring
is usually performed by people with close kin-
ship ties, often living in the same house and
motivated by love and a desire to keep an
older person out of an institution. However, the
burden of care may lead in time to conflicting
emotions, dealing with changes in personality
Source: Adapted from Lynn & Adamson (4).
and behaviour, restrictions on the carer’s own
Fig. 5 - Traditional concept of palliative care
life, and the drain on financial resources.
Long-term care for seriously ill relatives is
In fact, people and their families experience
unpaid and unsupported work that may dam-
many problems throughout the many years of
age the health, wellbeing and financial securi-
an illness and need help at the time and not at
ty of caregivers themselves (11).
an easily definable point just before death. The
idea that palliative support and care should be
A new way of looking at palliative care
offered alongside potentially curative treat-
ment, although obvious to patients and fami-
As ageing populations develop new needs,
lies, appears a radical idea for some health
health care systems need to be equally flexible
professionals (Fig. 6). In addition to supporting
17
services. This has recently been incorporated
into the concept of “patient-centred care” that
©
many health care systems are now attempting
to implement, which emphasizes the need to
structure health care in response to people’s
values and preferences.
Patient-centred care is care that
incorporates respect for patients’
values and preferences, provides
information in clear and under-
Source: Adapted from Lynn & Adamson (4).
standable terms, promotes autono-
Fig. 6 - New concept of palliative care
my in decision-making and attends
people with a clearly terminal illness, health
to the need for physical comfort
care systems must find ways of supporting
and emotional support (13).
people with serious chronic illness or multiple
chronic problems over many years and allow
for an unpredictable time of death (12).
Preferences for place of care and death
Autonomy and choice
There is increasing research evidence con-
cerning the decisions that people would prefer
to make about care at the end of their life.
Everyone has the right to … secu-
rity in the event of unemployment,
sickness, disability, widowhood,
old age or other lack of livelihood
in circumstances beyond his [or
her] control.
Article 25, United Nations Universal
Declaration of Human Rights, 2001
However complex a person’s problems or
uncertain their future may be, autonomy is a
key human right and maintaining this must be
a core ethical value for society and health
18
Most studies have found that around 75% of
prefer home care at the end of life (although as
respondents would prefer to die at home.
they approach death, part of this group may
Those recently bereaved of a relative or friend
come to prefer inpatient care (14). A core value
are slightly more likely to prefer inpatient hos-
for palliative care from its inception has been
pice care. A range of studies have found that
in enabling people to make genuine choices
between 50% and 70% of people receiving
about their care.
care for a serious illness also say they would
References
1. National cancer control pro-
7. Murray SA et al. Dying of lung
11. Koffman J, Snow P. Informal
grammes: policies and managerial
cancer or cardiac failure: pro-
carers of dependants with advan-
guidelines,
2nd ed. Geneva,
spective qualitative interview
ced disease. In: Addington-Hall
World Health Organization, 2002.
study of patients and carers in
J, Higginson IJ, eds. Palliative
the community. British Medical
care for non-cancer patients.
2. Sepulveda C et al. Palliative care:
Journal, 2002, 325:929–934.
Oxford, Oxford University Press,
the World Health Organization’s
2001.
global perspective. Journal of
8. Hofman A et al. The prevalence of
Pain and Symptom Management,
dementia in Europe: a collabora-
12. Lunney JR et al. Patterns of func-
2002, 24:91–96.
tive study of 1980–1990. Inter-
tional decline at the end of life.
national Journal of Epidemiology,
Journal of the American Medical
3. Seale C, Cartwright A. The year
1991, 20:736–748.
Association, 2003, 289:2387–2392.
before death. London, Avebury
Press, 1994.
9. Albinsson L, Strang P. Existential
13. Hewitt M, Simone JV, eds.
concerns of families of late-stage
Ensuring quality cancer care.
4. Lynn J, Adamson DM. Living well
dementia patients: questions of
Washington, DC, National Aca-
at the end of life: adapting health
freedom, choices, isolation, death,
demies Press, 1999.
care to serious chronic illness in
and meaning. Journal of Palliative
old age. Arlington, VA, Rand
14. Higginson IJ, Sen-Gupta GJA.
Medicine, 2003, 6:225–235.
Health, 2003, used with permis-
Place of care in advanced can-
sion.
10. Christakis NA, Escare JT Survival
cer: a qualitative systematic lite-
of Medicare patients after enrol-
rature review of patient prefe-
5. McCarthy M, Lay M, Addington-
ment in hospice programs. New
rences. Journal of Palliative
Hall JM. Dying from heart disea-
England Journal of Medicine,
Medicine, 2000, 3:287–300.
se. Journal of the Royal College
1996, 335:172–178.
of Physicians, 1996, 30:325–328.
6. McCarthy M, Addington-Hall JM,
Lay M. Communication and
choice in dying from heart dis-
ease. Journal of the Royal
Society of Medicine,
1997,
90:128–131.
19
3.
EVIDENCE OF UNDERASSESSMENT
AND UNDERTREATMENT
Despite the fact that older people have var-
ied needs for health and social care at the
end of life, there is already evidence that
many of their needs are not met. A body of
evidence is mounting to show that older
people suffer unnecessarily because of
widespread underassessment and under-
treatment of their problems.
Underassessment of pain
One important cause of individual suffering is
pain. Community surveys consistently find
that pain is an important symptom in around
one third of older people (1). Pain makes peo-
ple feel less positive about their health, and in
around one fifth is bad enough to limit their
everyday activity (2). However, older people
tend to underreport their symptoms, and
physicians in turn tend to undertreat pain in
older people, particularly in nonmalignant dis-
ease but also in patients being treated for can-
cer. A large American study of over 4000 can-
cer patients in nursing homes who reported
Lack of information and involvement
daily pain found that a quarter received no
in decision-making
painkillers of any type. As age increased a
greater proportion of people in pain received
There have been consistent findings in the last
no pain relief, and judged according to WHO’s
few decades that cancer services often fail to
pain ladder, those over 85 years of age were
meet patients’ needs for communication,
least likely to receive drugs such as opiates
information and support. Systematic reviews
(Fig. 1) (3). A regional cross-sectional study in
find strong evidence that patients value accu-
one region in Italy found that 57% of 4121
rate information, that many feel they are given
hospital patients interviewed had suffered pain
insufficient information, and that doctors and
in the previous 24 hours. The proportion with
nurses currently have limited ability to detect
pain increased significantly with age (4).
patients’ needs (5). Although there are
Older people with dementia are at particular
methodological problems with measures of
risk of poor pain control, because their com-
“satisfaction” and with international compar-
munication problems make them less able to
isons because of differences in expectations,
report pain and it is more difficult for their
survey data do suggest that patients identify
attendants to assess it properly.
similar kinds of problems in different countries.
20
suggested by detailed studies in the United
States, which find that the proportion of peo-
ple dying at home ranges from 18% to 32%
and appears to vary primarily with the avail-
ability of hospital beds (12). Patient prefer-
ences, physician training and availability of
Source: Bernabei et al. (3).
community services were either irrelevant to
place of death or of minimal importance com-
Fig. 1 - Pharmacological treatment of cancer patients for pain in
American nursing homes, according to the WHO pain ladder
pared to the number of hospital beds per
head of population.
Salient issues include information and educa-
Cultural values are also important. In Italy, for
tion, coordination of care, respect for prefer-
example, where the hospice movement is in its
ences, emotional support, physical comfort,
infancy, it is widely recognized that death in hos-
involvement of family and friends, and conti-
pital is more common in the north of the country
nuity and transitions in care (6). Many studies
while in the south families prefer to care for peo-
of people diagnosed with life-threatening ill-
ple at home. The Netherlands has reported
ness reveal that the way in which they are
some success in providing a range of palliative
given information and are involved in decision-
making are important determinants of satis-
faction with care. A large American cohort
study of seriously ill patients recently con-
firmed that these factors were also important
for families (7,8).
Recent reviews of cancer treatment and care
in the United States have revealed widespread
variation in treatment and care received by
older people, suggesting that they had not
received information about the full range of
options available (9,10).
Lack of home care
Fig. 2 - Preliminary data on place of death by country
Sources: United States: Weizen SMS et al. (11); England and Wales:
Despite the preference of many people to be
Office of National Statistics 2000; Switzerland: extrapolations from
cared for and to die at home, in practice death
Federal Statistics 1985; France: INSERM 1999; Netherlands: Central
Office of Statistics in the Netherlands, 2000 (M. Ribbe, personal
in hospital remains common in many coun-
communication). Eire: J. Ling, personal comminication. Germany: T.
tries (Fig. 2).
Schindler, personal communication.
Note: Data from different countries are collected in different ways
The variation in place of death suggests that
and sometimes not at all. This has limited the comparison that can
the organization of services plays an important
be drawn, but highlights the need for health care systems across
role in determining the options that people
Europe to begin to collect this information routinely. Some 15% of
deaths in the Netherlands also occur in residential homes for the
can consider (Fig. 3). This possibility is further
elderly, and these are not included in the graph above.
21
care services in different settings and in allowing
been the focus of specialist palliative care
people to die at home if they wish (13).
and where models of palliative care are only
just beginning to be
applied. Nevertheless,
even older people with
cancer may not have
Percentage of cancer deaths occurring
at home, England 1994
access to specialist pal-
liative care. In England
and Wales, for example,
older people are under-
represented in settings
such as inpatient hos-
pices, where high-quality
end-of-life care can be
offered
(14–16).
With
increasing age they are
less likely to receive care
for their final illness in an
inpatient hospice (Fig. 4).
A study in Australia found
that 73% of cancer
patients under 60 years of
age were referred to pal-
liative care services com-
pared to only 58% of
those aged over 80 years
Fig. 3 - Percentage of cancer deaths occurring at home, England
(18). Specialist palliative care services in the
1994, by Health Authority
Source: Higginson IJ Astin P, Doland S, Sen-Gupta G, Jarman B
United States reach more non-cancer
(1997), King’s College London.
patients than many other services, but overall
Note: Wales data not included.
only 17% of all dying people are reached by
federally funded hospice services (19). In one
Many countries, however, do not routinely
analysis, 30% of patients cared for by inpa-
record and collate data on place of death.
tient hospice services suffered from non-can-
cer illnesses, most commonly cardiac failure,
Lack of access to specialist services
chronic obstructive pulmonary disease,
One reason for older people not receiving pal-
stroke, dementia and renal failure (18). By
liative care is that they suffer more often from
comparison, figures for the United Kingdom
many chronic illnesses such as heart failure
are far lower (20).
and dementia, which have not traditionally
There is relatively little information on the
22
needs of very old people
receiving specialist pallia-
tive care in hospital. One
American study found that
patients aged 80 who were
referred to the specialist
palliative care service in
one hospital were more
likely to be women living in
nursing homes. They were
less likely to have cancer
and more likely to have
dementia, and this factor was the major influ-
disease and dementia. Many people recognize
ence on their ability to take part in decisions
a move to a nursing home as a “last resting
about their care and treatment (21).
place” before death, and many people living in
these homes will clearly have palliative care
Lack of palliative care within nursing
needs (22).
and residential homes
In many countries, nursing homes already play
an increasing role in caring for frail older people
Between 2% and 5% of people aged 65 or
at the end of life (Fig. 4). In the United States, for
older live in nursing homes. Mainly, however,
example, the proportion of people dying in
these are older people who are frail or with
nursing homes increased from just under one in
chronic physical or mental disability, and diag-
five in 1989 to one in four in 1997. About half
noses commonly include stroke, cardiac fail-
spend some time in a nursing home in the last
ure, chronic pulmonary disease, Parkinson’s
month of life. People dying in nursing homes
Source: Office of National Statistics (17).
Source: Gambassi et al. (23).
Fig. 4 - Place of death from cancer in older patients, England
Fig. 5 - Percentages of older people experiencing pain in long-
and Wales, 1999, analysed by Higginson
term care: comparison of five countries
23
are more likely to endure a
prolonged period of disability
before death than those
dying at home. Most resi-
dents complain of pain, and
data suggest that pain is not
well treated and sometimes
not treated at all (23) (Fig. 5).
Up to two thirds of people liv-
ing in nursing homes are
affected by cognitive impair-
ment and this complicates
the assessment and recogni-
tion of pain (J.M. Teno,
unpublished observations,
2002).
In some countries, nursing
homes run rehabilitation pro-
grammes. The system in the
Netherlands appears to be
particularly well developed,
with palliative care units sited in 13% of nurs-
Generally, however, little is known about the
ing homes. In the United States, nursing home
quality of end-of-life care received in nursing
patients enrolled in palliative care programmes
homes, and issues of concern include staff
delivered by hospice services received better
shortages, high staff turnover and lack of pal-
pain control than other residents (24).
liative care skills (22).
24
References
1. AGS Panel on Persistent Pain in
10. Hewitt M, Simone JV, eds.
18. Hunt RW et al. The coverage of
Older Persons. The management
Ensuring quality cancer care.
cancer patients by designated
of persistent pain in older per-
Washington, DC, National
palliative care services: a popula-
sons. Journal of the American
Academies Press, 1999.
tion-based study, South
Geriatrics Society,
2002,
Australia, 1999. Palliative
11. Weizen SMS et al. Factors asso-
50:S205–S224.
Medicine, 2002, 16:403–409.
ciated with site of death: a
2. Allard P et al. Educational inter-
national study of where people
19. Haupt BJ. Characteristics of hos-
ventions to improve cancer pain
die.
Medical Care,
2003,
pice care users: data from the
control: a systematic review.
41:323–335.
1996 National Home and Hospice
Journal of Palliative Medicine,
Care Survey. Advance Data,
12. Facts on dying 2002 – Brown atlas
2001, 4):191–203.
1998, 28(299):1–16.
of dying. Providence, RI, Brown
3. Bernabei R et al. Management of
University, 2002 http://www.
20. Eve A, Higginson IJ. Minimum
pain in elderly persons with can-
chcr.brown.edu/dying/brownat-
dataset activity for hospice and
cer. Journal of the American
las.htm, accessed 23 July 2003).
hospital palliative care services in
Medical Association,
1998,
the UK 1997/98. Palliative
13. Francke AL. Palliative care for ter-
279:1877–1882.
Medicine, 2000, 14:395–404.
minally ill patients in the
4. Costantini M, Viterbori P, Flego G.
Netherlands. The Hague, Ministry
21. Evers MM, Meier DE, Morrison
Prevalence of pain in Italian hos-
of Health, Welfare and Sport,
RS. Assessing differences in care
pitals: results of a regional cross-
2003.
needs and service utilization in
sectional survey. Journal of Pain
geriatric palliative care patients.
14. Gray JD, Forster DF. Factors
and Symptom Management,
Journal of Pain and Symptom
associated with utilization of spe-
2002, 23:221–230.
Management, 2002, 23:424–432.
cialist palliative care services: a
5. NHS Centre for Reviews and
population-based study. Journal
22. Hockley J, Clark D, eds. Palliative
Dissemination. Informing, com-
of Public Health Medicine, 1997,
care for older people in care
municating and sharing decisions
19:464–469.
homes.
Buckingham, Open
with people who have cancer.
University Press, 2002.
15. Addington-Hall JM, Altman D,
Effective Health Care Bulletin,
McCarthy M. Who gets hospice
23. Gambassi G et al. Cross-national
2000, 6:6.
in-patient care? Social Science
comparison of predictors of pain
6. Coulter A, Cleary PD. Patients’
a n d M e d i c i n e ,
1 9 9 8 ,
in elderly in long-term care. In:
experiences with hospital care in
46:1011–1016.
[Abstracts] Annual Meeting of the
five countries. Health Affairs,
American Geriatrics Society –
16. Mortality statistics, general.
2001, 20:244–252.
American Federation for Aging
Series DH1 No. 33, Table 17.
Research, Philadelphia, PA, May
7. Lynn J et al. Perceptions by fam-
London, Office of National
19–23, 1999. New York, NY,
ily members of the dying experi-
Statistics, 2000 (http://www.sta-
American Geriatrics Society,
ence of older and seriously ill
tistics.gov.uk/downloads/theme
1999:159.
patients. Annals of Internal
health/DH1 33/DH1 33.pdf,
Medicine, 1997,126:97–106.
accessed 23 July 2003).
24. Millar S et al. Does receipt of hos-
pice care in nursing homes
8. Baker R et al. Family satisfaction
17. Office of National Statistics.
improve the management of pain
with end-of-life care in seriously
Mortality statistics. General
at the end of life? Journal of the
ill hospitalized adults. Journal of
review of the Registrar General
American Geriatrics Society,
the American Geriatrics Society,
on Deaths in England and Wales
2002, 50:508–515.
2000, 48(5, Suppl.):61–69.
1997, Series DH1, No. 30.
London, Stationery Office, 1999.
9. Foley KM, Gelband H, eds.
Improving palliative care for can-
cer. Washington, DC, National
Academies Press, 2001.
25
4.
EVIDENCE FOR EFFECTIVE CARE
SOLUTIONS
As the hospice and palliative care movement
Communication skills
has expanded, evidence has grown for the
Effective communication between doctors and
effectiveness of aspects of the treatment and
patients is associated with a range of health
care it has promoted. Systematic reviews of
outcomes including, most commonly,
the evidence, including studies on people with
improvements in psychological health, symp-
cancer from many different countries, now
toms and function and better control of pain,
report consistently the importance of certain
blood pressure and blood glucose level (3).
key areas of care. The evidence is currently
The ability of health professionals to commu-
strongest for simple measures such as pain
nicate effectively with families and involve
relief, good communication and coordinated
them in decision-making consistently emerges
teamwork to satisfy preferences for place of
as an important contributor to their satisfac-
care. There is also preliminary evidence for the
tion with care at the end of life (4). The com-
application of models of palliative care for
munication skills of health professionals can
people with other illnesses (1).
be improved by using feedback from video-
taped consultations and discussion, but they
Palliative care skills of individual
nevertheless need further help to sustain
health professionals
these new skills in everyday practice (5).
Pain and symptom control
Giving information
The effectiveness of pain control methods has
Recordings or summaries of key consultations
been established for over 30 years, and a
are of benefit to most cancer patients. They
wide variety of drugs is available to control
lead to improved knowledge and recall of
pain associated with cancer and other illness-
information without causing psychological
es. Observational studies show that, when
problems (6) and to greater satisfaction (7).
clinical guidelines on pain control are fol-
Nevertheless, these must be used sensitively
lowed, 70–97% of patients with advanced
with patients whose prognosis is poor, and
cancer gain adequate pain relief. Research on
account must be taken of whether or not they
implementation has been relatively neglected,
wish to know the full facts (5). In general, deci-
but education can improve the knowledge
sion-making aids can help professionals deal
and attitudes of staff about pain (though not
with the concerns of patients, explain their
necessarily the levels of pain suffered by
treatment and improve their satisfaction (5,8).
patients). There is most evidence for brief
interventions, whereby nurses encourage
Providing holistic care
patients to complete pain diaries and doctors
use explicit strategies to ensure that pain is
Spiritual support
assessed daily and that drug dosages are
Spiritual and religious needs are highly per-
adjusted accordingly (2). By comparison, the
sonal and salient to many people at the end of
study of pain using standardized measures in
life, and therefore need to be part of palliative
older people with other illnesses has been rel-
care services. There is some preliminary evi-
atively neglected.
dence that spiritual belief can affect the way in
26
greater control. Despite interest in their use in
palliative care, studies have so far been ham-
pered by a lack of standard definitions, small
sample sizes, poor response rates and inade-
quate measurement, and thus no adequate
conclusions have been drawn (9).
Coordinating care across different settings
Transferring information
An important issue in the care of older people
is the transfer of information between settings,
and between those with responsibility for
medical care and those providing medical and
social support services in the community.
Current mechanisms are often inadequate and
– although there is little empirical research in
the area – a “key worker”, “case manager” or
“case coordinator” seems the most effective
way of transferring information (9,12).
Meeting preferences for home care
which patients cope, and even the outcome of
A second issue is whether improved coordina-
the disease. It can also affect the way in which
tion of care can allow more patients to die at
relatives cope with bereavement (9,10).
home if they so desire. Trials of different
approaches to coordinating hospital and com-
Psychological support
munity services are now finding that a higher
A wide range of psychological interventions
proportion of people can be helped to die at
has been tested in over 150 randomized trials
home if they wish. There is also evidence that
over 40 years. The results were mixed and
the quality of life of their caregivers can be
tended to vary by site of disease and follow-up
improved if support is provided and well coor-
period, with positive outcomes not being sus-
dinated (10).
tained over time. Most evidence exists for
adjuvant psychological therapy, but more
Supporting families and caregivers
work is required to identify specific needs and
how to target patients for intervention (9,11).
A range of services has been developed,
including home care, respite and “sitting”
Complementary therapy
services, activities within social networks,
In the general population, complementary
support groups and individual psychotherapy
therapies tend to be used by younger women
or education. Carers generally report satisfac-
who perceive them as natural and allowing
tion with home care and, if they are willing to
27
leave the patient, value
respite and sitting services.
The few who take up group
activities or support groups
value the chance to talk
openly with others, but for-
mal evaluation of their ben-
efit is weak. Further work is
needed to explore the prior-
ities of caregivers and what
it is realistic for services to
achieve for them (13). Here
it is important to remember
that giving caregivers the
impression of being lis-
tened to and appreciated is
in itself an important goal of
care.
Anxiety and depression are normal responses
Despite conflicting findings in initial reviews,
to loss and the threat of loss in lifelong rela-
meta-analysis now reveals benefits for both
tionships. Health professionals who meet peo-
patients and families in terms of the control of
ple at the very end of these relationships may
pain and other symptoms and the satisfaction
not be able to influence these basic respons-
expressed by patients and their families (com-
es. Nevertheless, they can avoid adding a
bined odds ratio 0.38, 95% CI 0.33–0.44) (Fig.
sense of isolation or confusion by providing
1) (9,14).
care that appears coherent and coordinated
and that relieves the patient’s suffering.
Specialist palliative day care
There is evidence that patients value attending
Specialist palliative care
palliative day care units, where they can meet
other patients, talk to staff and become
Specialist palliative care teams
involved in activities. There is no evidence as
A common model for delivering palliative care
yet, however, that such attendance affects
has been to concentrate expertise in multipro-
other outcomes such as quality or life or
fessional teams that work in hospitals, inpa-
symptom control (9).
tient units such as hospices or within the com-
munity. These teams usually deal with a
Bereavement support
selected group of patients, referred to them by
In several studies, the relatives of patients
other teams of professionals, who have the
dying in the care of specialist palliative care
most complex needs for symptom control,
services reported fewer psychological symp-
communication and coordination of care.
toms and unmet needs than those of patients
28
hospital admissions and
prolong survival (16).
pain
quality of life
Specialist nurses
other symptoms
On balance, studies so far
patient satifaction
home death
show that specialist nurse
carer satisfaction
support can also help
carer morbidity
patients with heart failure
carer satisfaction
and improve continuity of
carer morbidity
care (17,18). Patients in the
service-related
care of respiratory nurses
live longer but do not have
a better quality of life; they
none the less place value
on home visits from nurses
(19).
Hospice services for
Source: Higginson et al. (14).
patients with dementia
Fig. 1 - Cumulative effect size of palliative care teams, by coun-
Pilot studies on the provision of palliative
try of study
care and hospice services for patients in the
receiving standard care (9). Assessing the need
end stages of dementia suggest they can
for support and counselling after bereavement
make patients more comfortable and help
is regarded as an important part of palliative
carers (20).
care. There is relatively little evidence, however,
for the predictive power of assessments, the
Advanced care planning
targeting of individuals or the benefit of individ-
There has recently been considerable interest
ual therapy, although these aspects are very
in advanced care planning, whereby people
difficult to evaluate (9,15).
can decide the care they would wish to have if
they were to be diagnosed with a life-threat-
Developing palliative care services
ening illness. Such plans provide a written
for non-cancer patients
record of people’s desires and preferences for
Multidisciplinary teams
health professionals and their relatives to fol-
Multidisciplinary teams are one way of caring
low if they become unable to make these deci-
for people with complex problems, and
sions for themselves. Despite hopes that
already have an established role in geriatric
these might reduce the number of unwanted
medicine and the care of people with specific
interventions at the very end of life, there is no
disorders. For example, team management of
evidence that such plans are always followed
people with cardiac failure can reduce their
or that they influence the use of resources or
29
costs (21). More comprehensive
methods are now being
explored. Equally, there is little
evidence for the effectiveness of
intensive care in meeting the pal-
liative care needs of older people
(22).
Generalizability of findings
Research on meeting the needs
of people experiencing and
dying from diseases other than
cancer is less well advanced.
There is little specific information
on effective methods for nursing
or residential homes to meet pal-
liative care needs, or of the
needs of people aged over 80 in
any setting. In general, there is also a lack of
reducing symptoms and suffering. It is unlike-
evidence from implementation research on
ly that these experiences differ widely by dis-
how to get established evidence translated
ease or across countries. This strongly sug-
into practice. The comparatively uncertain
gests that it is time to make a more active and
prognoses of non-cancer illnesses make it
concerted effort to improve palliative care,
more difficult to plan services. Nevertheless,
concentrating on the implementation of simple
simple measures such as good pain relief,
effective measures based on the complexity
communication, information and coordinated
and seriousness of the illness and on the
care from skilled professionals are effective in
needs of patient and family.
30
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15. Kato PM, Mann T. A synthesis of
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16. Rich MW et al. A multidisciplinary
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9. Gysels M, Higginson IJ, eds.
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Addington-Hall JM, Higginson IJ,
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British Medical Journal, 2001,
in the palliative care setting: a
ill hospitalized adults. Journal of
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multi-center Canadian study
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19. Shee C. Respiratory disease. In:
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11. Newell SA, Sanson-Fisher RW,
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Savolein NJ. Systematic review
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20. Hanrahan P, Lutchins DJ, Murphy
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cancer patients: overview and
K. Palliative care for patients with
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recommendations for future
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6. Scott JT et al. Recordings or
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summaries of consultations for
12. Payne S et al. The communica-
21. Teno JM et al. Do advance direc-
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people between health and social
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7. McPherson C, Higginson I, Hearn
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31
5.
THE CHALLENGE FOR HEALTH POLICY-
AND DECISION-MAKERS
The challenge
As life expectancy increases, and more people
live past the age of 65 years and into very old
age, patterns of disease at the end of life are
changing. More people are dying from multiple
serious chronic diseases rather than acute ill-
nesses, thus challenging health care systems
to provide more effective and compassionate
care during the last years of life. More people
need some kind of help with problems caused
by chronic heart, respiratory and cerebrovas-
cular diseases, as well as cancer, and the pop-
ulation of people needing care at the end of life
is now simply much older and much larger.
A considerable body of evidence shows that
older people already suffer unnecessarily
owing to widespread underassessment and
undertreatment of their problems and a lack of
access to palliative care. As a group, older
people have many unmet needs, experience
multiple problems and disabilities, and require
more complex packages of treatment and
social support. They also suffer from common
serious chronic diseases other than cancer,
while the predominant focus of palliative care
in most countries has been on cancer.
Evidence for effective care solutions
on prognosis, patients experiencing non-can-
cer illnesses have similar needs and will bene-
Reviews of evidence from many countries
fit equally from the same measures. This sug-
show the importance of core aspects of pallia-
gests that it is time to make a more active and
tive care for cancer patients and the effective-
concerted effort to improve care, by concen-
ness of simple measures in improving patient
trating on simple proven measures based on
outcomes. These include adequate pain and
patient and family needs and the complexity
symptom relief, good communication and
and seriousness of the illness.
information, and coordinated care from teams
of skilled professionals who help meet prefer-
Barriers to overcome
ences for care. Although the comparatively
uncertain prognoses of other illnesses may
The growth of the hospice and palliative care
make it more difficult to plan services based
movement over the last 30 years has demon-
32
strated the effectiveness of palliative care in
Potential solutions:
improving care towards the end of life. The
a public health policy approach
development of special expertise in caring for
The scale of the need for palliative care for
people with cancer and their families is
the growing population of older adults sug-
endorsed by the public support of its work. A
gests that it requires a multifaceted approach
substantial body of opinion recognizes that
and the application of public health methods
this model of care now needs to be adapted
to make an impact. This means identifying
for other patients on the basis of need rather
needs within populations, monitoring trends
than diagnosis or prognosis.
and the effectiveness of interventions,
However, it takes more than knowledge and
increasing professional education and public
good will or good intentions to translate this
awareness, and setting up systems that can
into action. Achieving better palliative care for
support the changes needed in behaviour
older people requires a willingness to listen to
and practice.
them and their families, imagination, and a
Palliative care for older people must be
determination to remove barriers at all levels of
included within health service planning at a
health care systems. These barriers include:
national level. Each country must decide how
• a lack of awareness and knowledge of the
much priority and resources to give to this
scale of the problem;
area, but it must be defined clearly. There is
• a lack of health policies for palliative care,
evidence, for example, that funding hospices
both for older people and for the diseases
in the United States has led to financial sta-
they commonly suffer from;
bility, thus encouraging long-term planning
• a lack of integration of palliative care across
including care for non-cancer patients.
health care settings and services;
Policies for palliative care need to be linked
• a lack of palliative care ethos or skills in the
to other health care policies for older people,
settings where older people are actually
and to specific diseases such as heart dis-
cared for and die;
ease and dementia.
• complacency and age discrimination about
the need to provide high-quality, end-of-life
Ensuring palliative care is integral to health
care for older people;
services
• faulty assumptions about the needs of older
people and their desire or ability to cope
Policy-makers need to ensure that palliative
without special forms of help;
care is integral to the work of all heath services
• failure to implement simple proven effective
and is not seen as just an “add-on extra”. This
measures;
involves promoting effective care, monitoring,
• the complexity of linking care packages
and rewarding health organizations for improv-
across different settings and between health
ing quality. Effective palliative care for older
and social support and care; and
people also requires partnerships between
• a lack of resources and outdated patterns of
geriatric medical teams, nursing homes and
care and health systems delivery.
palliative care staff. The challenge of integrat-
33
ing palliative care more fully across all settings
Improving the application of
and health services is already being met in
palliative care skills across all settings
some countries. The Netherlands health policy
Much of the suffering of older people could be
for palliative care, for example, provides some
alleviated if currently available treatments
examples of care from which others could
were used more widely. One problem seems
learn, and suggests that change is possible.
to be lack of training in pain and symptom
Current variation within countries also sug-
control, and a reluctance to use opioid drugs
gests that change is possible. A range of qual-
in primary and secondary care outside spe-
ity improvement methods has been developed
cialist settings. Tackling this will involve
to improve palliative care and these are cur-
expanding education and training for staff pro-
rently being tested in different settings. In the
viding care in all settings, including residential
United Kingdom, for example, national audits
and nursing homes as well as hospitals and
of the care of hospital patients with stroke
the patient’s own home.
have already resulted in wide-ranging
improvements in care. Exciting preliminary
Identifying gaps in the research base
results are emerging from using continuous
quality improvement methods in the United
Needs during the last years of life have not
States. Some reliable instruments, including
been a research priority so far, and in general
the Support Team
A s s e s s m e n t
Schedule (STAS),
The Resident
A s s e s s m e n t
Instrument (RAI)
and the Com-
p r e h e n s i v e
G e r i a t r i c
A s s e s s m e n t
(CGA) have been
developed. Other
methods being
d e v e l o p e d
include routinely
collecting infor-
mation from
bereaved relatives
and feeding this
back into care
planning.
34
much more money is spent on research into
Another difficulty is that many of the most
potentially curative treatment. This means that
effective interventions involve changing the
the evidence base for palliative care is incom-
behaviour of health professionals and the
plete. In the United Kingdom, for example, only
organization of their work. This barrier to the
0.18% of the cancer research budget is spent
implementation of proven effective methods
on palliative care or end-of-life research. In gen-
applies to all health care, but is particularly
eral, there is more research available describing
formidable in the effort to extend palliative
the needs of people towards the end of life, and
care to older people with serious chronic ill-
interventions that might provide a potential
ness. This makes the field more complex
solution, as opposed to formal evaluations of
than those in which single effective tech-
their effectiveness. Randomized controlled tri-
nologies may be introduced. Research and
als, often seen as the gold standard of
development urgently needs to tackle the
research, are much more difficult to undertake
complexities of implementing improvements
among such vulnerable populations.
in this area.
35
6.
RECOMMENDATIONS
Policy- and decision-makers need to:
1. recognize the public health implications of
6. ensure that the training of health care pro-
ageing populations with palliative care
fessionals includes sufficient time devoted
needs, and that substandard care towards
to palliative medicine and the care of older
the end of life is a public health problem;
people, and that professionals are sup-
ported to keep up to date;
2. undertake, at national or regional popula-
tion level, a “quality audit” of palliative care
7. demand and invest in high standards in
services delivered to older people in nurs-
palliative care for older people, including
ing and residential homes, hospitals, hos-
pain and symptom management, commu-
pices and at home, including staff qualifica-
nication skills and coordination of care;
tions in these institutions, and define a
8. act against ageist stereotypes that affect
method to “track” improvements in care;
whether older people are offered palliative
3. invest in the development of small core
care when they need it;
data sets that link different care settings
9. involve older people – as the users of
locally, and that can be used to identify
services – in making decisions about the
and monitor the needs of older people;
types and mix of services they want avail-
4. invest in audit and quality improvement
able to them towards the end of life and
methods to improve the care provided for
into bereavement; and
local populations, and reward the involve-
10. provide information about the range of
ment of health organizations, including
services available, including for symptom
nursing homes, in audit and quality
control, and their effectiveness for older
improvement schemes;
people who are facing life-threatening,
5. ensure that multidisciplinary services
chronic or progressive illness.
shown to meet the needs of older people
for palliative care are adequately funded,
rewarded and supported;
Health professionals need to:
1. ensure they are adequately trained in the
and that they receive the unbiased infor-
palliative care of older people, including
mation they need without experiencing
pain and symptom management, commu-
discrimination because of their age; and
nication skills and care coordination;
3. ensure that their organizations work in a
2. ensure that older people with palliative
coordinated fashion with other statutory,
care needs are regarded as individuals,
private or voluntary organizations that may
that their right to make decisions about
help older people needing palliative care.
their health and social care is respected,
36
Those funding research need to:
1. invest in research into the geographical
variation between and within countries in
the palliative care that older people
receive;
2. invest in creative research into the barriers
to accessing palliative care, the etiology
and management of non-cancer pain and
other symptoms in older people, their
subjective experience of care, the psy-
chological and social needs of different
cultural groups, the testing of advance
care planning that promotes patient-
directed care, and meeting the needs of
frail older people;
3. promote collaboration in research
between palliative and geriatric medicine
in the areas of palliative care, and the
inclusion of older people in all kinds of
innovative research on physical interven-
tions, including drug treatment;
4. invest in research into effective palliative
care and treatment for older people
across a range of conditions, making this
a significant component of research
investment;
5. promote the development of standardized
assessment tools for palliative care in
older people, and how these and meth-
ods such as “report cards” might be
meaningfully used across different coun-
tries; and
6. ensure that research in care and treat-
ment does not exclude older people.
37
WE ARE GRATEFUL TO THE FOLLOWING WHO WERE INVITED TO COMMENT ON THIS REPORT,
MANY OF WHOM GAVE USEFUL ADVICE, INFORMATION, GRAPHS, FIGURES AND REPORTS
Australia
France
Israel
Professor Ian Maddocks and
Jacqueline Bories and
Ronit Behar
Deborah Parker
Marie Claire Garnier
The Hospice, Sheba Medical
Flinders University, Adelaide
Société Française
Centre, Ramat Gan
d’Accompagnement et SP, Paris
Austria
Dr Michaela Berkovitch
Dr Franz Zdrahal
Dr Aude Le Devinah
Oncological Hospice, Haih Sheba
Caritas of Vienna, Vienna
Ministry of Health, Paris
Medical Centre, Tel Hashomer
Paulette LeLann
Italy
Belgium
IRFAC, Rouen
Anne-Marie De Lust
Dr Roberto Bernabei
Federation of Palliative Care
Dr Christophe Trivalle
Centro Medicina Invecchiamento
for Flanders, Wemmel
Hôpital Paul Brousse, Villejuif
Università Cattolica del Sacro
Cuore, Rome
Anne-Françoise Nollet
Germany
Federation of Palliative Care
Dr Massimo Costantini
Professor Eberhard Klaschik
for Wallone, Namur
Istituto Nazionale per la Ricerca
Centre for Palliative Medicine,
sul Cancro, Genova
Bonn
Canada
Dr Franco De Conno
Albert J Kirshen
Thomas Schindler
Istituto Nazionale per
Temmy Latner Centre
Nord-Rhein-Westfalen, Geldern
lo Studio e la Cura dei Tumori,
for Palliative Care, Toronto
Greece
Milan
Croatia
Dr Kyriaki Mystakidou
Claude Fusco-Karman
Professor Anica Jusic
University of Athens
Lega Italiana per la
Croatian Society for Hospice and
Professor Athina Vadalouca
Lotta contro i Tumori, Milan
Palliative Care, Zagreb
Arieton Hospital, Athens
Daisy Maitilasso
Ana Stambuk
Società Italiana di Cure Palliative,
Faculty of Law, Zagreb
Hungary
Milan
Professor Katalin Hegedus
Dr Carla Ripamonti
Cyprus
Semmelweis University of
Istituto Nazionale per
Jane Kakas
Medicine, Budapest
lo Studio e la Cura dei Tumori,
Cyprus Association of Cancer
Milan
Patients and Friends, Nicosia
Ireland
Julie Ling
Dr Franco Toscani
Dr Sophia Pantekhi
Department of Health and
Istituto Maestroni
CAS Arodaphnousa, Nicosia
Children, Dublin
Istituto di Ricerca in Medicina
Avril 0’Sullivan
Palliativa Onlus, Cremona
Irish Cancer Society, Dublin
Netherlands
Dr Luc Deliens
VU University Medical Centre,
Amsterdam
Dr Ger Palmboom
NPTN, Bunnik
38
Norway
Baroness Ilora Finlay
United States of America
Dr Dagny Faksvag Haugen
University Medical School
Dr David Caseratt
Haukeland University Hospital,
of Wales, Cardiff
University of Pennsylvania,
Bergen
Philadelphia
Katherine A Froggatt
Romania
University of Southampton
Mary Callaway
Dr Gabriela Rahnea-Nita
Open Society Institute,
Professor Sîan Griffiths
St Luca Hospital, Bucharest
New York
President, Faculty of Public
Health Medicine, London
Dr Christine Cassel
Slovenia
American Board
Urska Lunder
Dr Andrew Hoy
of Internal Medicine,
Palliative Care Development
President, Association
Philadelphia
Institute, Ljubljana
of Palliative Medicine,
Southampton
Dr Richard Della Penna
Spain
Kaiser, San Diego
Tom Hughes Hallet
Maria Jose Garcia Lopez
Marie Curie Cancer Care,
Dr Frank Ferris
Grupo Aran, Madrid
London
San Diego
Sweden
Professor Ross Lawrenson
Professor David Mechanic
Dr Carl Johan Furst
University of Surrey, Guildford
Rutgers University,
Karolinska Institute, Stockholm
New Jersey
Dr Michael Pearson
Professor Peter Strang
Royal College of Physicians,
Dr Diane E. Meier
Karolinska Institute, Stockholm
London
Mount Sinai School of Medicine,
New York
David Prail
Switzerland
Help the Hospices, London
Dr Greg Sachs
Dr Laura Di Pollina
School of Medicine,
Pain and Palliative Care
Professor Mike Richards
University of Chicago
Programme, Geneva
Department of Health, London
United Kingdom
Eve Richardson and Peter Tebbit
Professor Julia Addington-Hall
National Council for Hospices
King’s College London
and Palliative Care Services,
London
Tony Berry,
Peter Cardy and Gill Oliver
Gail Sharp
Macmillan Cancer Relief, London
Marie Curie Cancer Care, London
Professor David Clark
John Wyn Owen
University of Sheffield
Nuffield Foundation, London
Dr Deirdre Cunningham
South East London Strategic
Health Authority
39
The Floriani Foundation was established in 1977
with a donation from Virgilio and Loredana Floriani,
and was the first in Italy to set up free home care
for terminally ill patients. The aim of the Foundation
is the dissemination and application of palliative
care to assist terminally ill patients, care that takes
account of all aspects of the patient’s suffering:
physical, psychological and social. The
Foundation’s other concept is that patients and
their families are followed at every step along the
final difficult journey.
With the aim of spreading the application of pallia-
tive care in Italy and throughout the world, the
Floriani Foundation has promoted and supported
the setting up of the European Association for
Palliative Care, the Italian Association for Palliative
Care and the Italian School of Palliative Care.
The Floriani Foundation also founded the
Association of Friends of the Floriani Foundation,
whose purpose is, in addition to promoting and
organizing events, to raise funds and carry out the
aims of the Foundation.
40
Better Palliative Care for Older People
The European
The Open Society
King’s College
The European
Association of
Institute Network
London
Institute of
Palliative Care
Public Health
Oncology
Programme
World Health Organization
Regional Office for Europe
Scherfigsvej 8,
DK-2100 Copenhagen Ø,
Denmark
Telephone: +45 39 17 17 17
Fax: +45 39 17 18 18
E-mail: postmaster@euro.who.int
Web site: www.euro.who.int
FONDAZIONE FLORIANI
