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Better Palliative Care for Older PeopleThe EuropeanAssociation ofPalliative Care

The Open SocietyInstitute Network

Public HealthProgramme

King’s CollegeLondon

The EuropeanInstitute ofOncology

FONDAZIONE FLORIANI

Most deaths in European and other developed countries occur in people agedover 65, but relatively little health policy concerns their needs in the last years oflife. As life expectancy increases, the number of people living to older ages is alsoincreasing in many countries. At the same time, the relative number of people ofworking age is declining and the age of potential caregivers is increasing.Palliative care is therefore of growing public health importance. Older people havetraditionally received less palliative care than younger people and services havefocused on cancer. This booklet is part of the WHO Regional Office for Europe’swork to present evidence for health policy- and decision-makers in a clear andunderstandable form. It presents the needs of older people, the different trajec-tories of illnesses they suffer, evidence of underassessment of pain and othersymptoms, their need to be involved in decision-making, evidence for effectivepalliative care solutions, and issues for the future. A companion booklet entitledPalliative care - the solid facts considers how to improve services and educateprofessionals and the public.

ABSTRACT

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), ItalyDr Elizabeth Davies, King’s College London, UKMr Peter Higginson, UKProfessor Anica Jusic, Regional Hospice Centre Volunteer Service, Croatian Society for Hospice Palliative Care and Croatian Association of Hospice FriendsMacmillan Cancer Relief, London, UK Professor Joan Teno, Brown University, USADavide Zinetti, Milan, Italy

Lithographic, printing and page make up Tipolitografia Trabella Srl - Milan, Italy

Better Palliative Carefor Older People

Edited byElizabeth Davies and Irene J Higginson

The European Association of Palliative Care

With the collaboration of:

Supported by the Floriani Foundation

The Open Society InstituteNetwork Public Health Programme

King’s College London The European Institute of Oncology

ISBN 9289010924

Address requests about publications of the WHO Regional Office to:• by e-mail publicationrequests@euro.who.int (for copies of publications)

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• by post PublicationsWHO Regional Office for EuropeScherfigsvej 8DK-2100 Copenhagen Ø, Denmark

© World Health Organization 2004

All rights reserved. The Regional Office for Europe of the World Health Organization welcomes requests for permission to reproduce ortranslate its publications, in part or in full. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatso-ever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities,or concerning the delimitation of its frontiers or boundaries. Where the designation “country or area” appears in the headings of tables,it covers countries, territories, cities, or areas. Dotted lines on maps represent approximate border lines for which there may not yet befull agreement.The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended bythe World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, thenames of proprietary products are distinguished by initial capital letters.The World Health Organization does not warrant that the information contained in this publication is complete and correct and shall notbe liable for any damages incurred as a result of its use. The views expressed by authors or editors do not necessarily represent thedecisions or the stated policy of the World Health Organization.

OLDER PEOPLEGERIATRIC MEDICINEEND OF LIFE CAREDEATH AND DYINGPALLIATIVE CAREPUBLIC HEALTHLIFE-THREATENING ILLNESSSERIOUS CHRONIC ILLNESS SUPPORTIVE CARETERMINAL CARE

KEYWORDS

3

CONTENTS

Contributors 5

Foreword 6

Preface 7

Introduction 8

1. Why palliative care for older people is a public health priority 10Ageing populationsThe changing epidemiology of disease The increasing age of caregiversFinancial implications for health care systemsThe range of settings for care

2. Palliative care: the needs and rights of older people and their families 14Palliative careThe needs of older people at the end of lifeThe needs of caregiversA new way of looking at palliative careAutonomy and choicePreferences for place of care and death

3. Evidence of underassessment and undertreatment 20Underassessment of painLack of information and involvement in decision-makingLack of home careLack of access to specialist servicesLack of palliative care within nursing and residential homes

4. Evidence of effective care solutions 26Palliative care skills of individual health professionalsProviding holistic careCoordinating care across different settingsSupporting families and caregiversSpecialist palliative care Developing palliative care services for non-cancer patients Advanced care planningGeneralizability of findings

5. The challenge for health policy- and decision-makers 32The challengeEvidence for effective care solutions Barriers to overcome Potential solutions: a public health policy approachEnsuring palliative care is integral to health servicesImproving the application of palliative care skills across all settingsIdentifying gaps in the research base

6. Recommendations 36

4

The World Health Organization was established in1948 as a specialized agency of the United Nationsserving as the directing and coordinating authorityfor international health matters and public health.One of WHO’s constitutional functions is to provideobjective and reliable information and advice in thefield of human health, a responsibility that it fulfilsin part through its publications programmes.Through its publications, the Organization seeks tosupport national health strategies and address themost pressing public health concerns.

The WHO regional Office for Europe is one of sixregional offices throughout the world, each with itsown programme geared to the particular healthproblems of the countries it serves. The EuropeanRegion embraces some 870 million people living inan area stretching from Greenland in the north andthe Mediterranean in the south to the Pacificshores of the Russian Federation. The Europeanprogramme of WHO therefore concentrates bothon the problems associated with industrial andpost-industrial society and on those faced by theemerging democracies of central and easternEurope 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 itspublications and encourages their translation andadaptation. By helping to promote and protecthealth and prevent and control disease, WHO’sbooks contribute to achieving the Organization’sprincipal objective – the attainment by all people ofthe highest possible level of health.

WHO Centre for Urban HealthThis publication is an initiative of the Centre forUrban Health, at the WHO Regional Office forEurope. The technical focus of the work of theCentre is on developing tools and resource materi-als in the areas of health policy, integrated planningfor health and sustainable development, urbanplanning, governance and social support. TheCentre is responsible for the Healthy Cities andurban governance programme.

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CONTRIBUTORSProfessor Janet AskhamKing’s College London, London, United Kingdom

Dr Elizabeth DaviesKing’s College London, London, United Kingdom

Dr Marilène FilbetHospices Civils, CHU de Lyon, Lyon, France

Dr Kathleen M FoleyMemorial Sloan-Kettering Cancer Center, New York, NY, USA

Professor Giovanni GambassiCentro Medicina InvecchiamentoUniversità Cattolica del Sacro CuoreRome, Italy

Professor Irene J HigginsonKing’s College London, London, United Kingdom

Professor Claude JasminHôpital Paul Brousse, Villejuif, France

Professor Stein KaasaUniversity Hospital of Trondheim, Trondheim, Norway

Professor Lalit KalraKing’s College London, London, United Kingdom

Dr Karl LorenzVeterans Administration Health Care System, Los Angeles, CA, USA

Dr Joanne LynnWashington Home Center for Palliative Care Studies and RAND Health, Washington, DC, USA

Professor Martin McKeeLondon School of Hygiene and Tropical Medicine,London, United Kingdom

Professor Charles-Henri RapinPoliger, Hôpitaux Universitaires de GenéveGeneva, Switzerland

Professor Miel RibbeVU University Medical Centre,Amsterdam, Netherlands

Dr Jordi RocaHospital de la Santa Creu, Barcelona, Spain

Professor Joan TenoBrown Medical School, Providence, RI, USA

Professor Vittorio VentafriddaEuropean Institute of Oncology (WHO collaborating centre) and Scientific Director, Floriani Foundation

The aim of this booklet is to incorporate pallia-tive care for serious chronic progressive ill-nesses within ageing policies, and to promotebetter care towards the end of life. A consider-able body of evidence shows that older peo-ple suffer unnecessarily, owing to widespreadunderassessment and undertreatment of theirproblems and lack of access to palliative care.As a group, older people have many unmetneeds. They experience multiple problemsand disabilities and require more complexpackages of treatment and social care. Thisraises many issues for their families and forthe professionals who care for them. High-quality care, matching the standards now pro-vided by inpatient hospice and palliative careservices for people with cancer, must bedeveloped for older people with equal needs.New policies and methods of improving caremust reach out and influence the experienceof older people in hospitals, in their ownhomes and in nursing and residential homeswithin the community. This booklet and itscompanion volume, Palliative care – the solidfacts, aim to provide policy-makers and otherswith comprehensive facts about the multiplefacets of palliative care and related services. This booklet defines what is known about theneeds of older people, using evidence fromepidemiology, social studies and health serv-ices research. During the review, it becameclear that the evidence we have on palliativecare is incomplete. There are differences inwhat can be offered across Europe. For someaspects more detailed and robust informationwould be desirable, but it is quite simply notavailable. This booklet provides the most solidinformation that is available at the moment.

Better palliative care for older people express-es a European viewpoint, but may reflect rele-vant issues in other parts of the world. It tar-gets policy- and decision-makers within gov-ernment health and social care, the non-governmental, academic and private sectors,and health professionals working with olderpeople. All these groups will need to work tointegrate palliative care more widely acrosshealth services, and policy-makers need to beaware of the proven benefits of palliative care.The booklet aims to provide information thatwill help with this task. It makes recommenda-tions for health policy- and decision-makers,health professionals and those fundingresearch on how services may be developedand improved.I should like to express my thanks to TheFloriani Foundation and to its ScientificDirector Dr Vittorio Ventafridda, without whosefinancial support and tremendous enthusiasmthis project would not have been realized. Ishould also like to thank the Open SocietyInstitute for its initial financial contribution tothis project. My deep appreciation goes to allthe experts who contributed to the preparationof the booklet, as well as to the EuropeanAssociation of Palliative Care for its technicalassistance. Finally, a special word of thanks isdue to Professor Irene Higginson and DrElizabeth Davies of King’s College London forthe effective way they drove and coordinatedthe whole preparation process and for theirexcellent editorial work.

Dr Agis D. TsourosHead, Centre for Urban Health WHO Regional Office for Europe

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FOREWORD

7

Across the world – and particularly in devel-oped countries – the number of older people isincreasing, raising many pressing issues forhealth policy as well as important financial andethical questions. Changes in the way familieslive and work can leave older people vulnera-ble and affect their sense of belonging withinsociety. In spite of existing welfare pro-grammes, very often the real needs of olderpeople – for pain relief, to feel involved and lis-tened to and to enjoy a certain degree ofautonomy – are not taken into consideration.Pain, physical suffering, helplessness, loneli-ness and marginalization can too oftenbecome part of everyday experience in thefinal phase of life. This booklet from the Regional Office forEurope of the World Health Organization aris-es from a project aimed at increasing aware-ness among policy- and decision-makers inhealth care about the needs of older peopleand how to promote innovative programmesof care. The contributors, recognized for theirwork in this area, were asked by ProfessorIrene Higginson and Dr Elizabeth Davies to dotheir best to set out the evidence of this neg-lected problem in our societies and of effectivesolutions.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 nowtime for palliative care to be part of the overallhealth policy for older people and to be anintegral part of the services they receive. Suchprogrammes need to be based on the intro-duction of palliative care delivered by welleducated professionals and caregivers work-

ing throughout health care systems withinhospitals and nursing homes and in people’sown homes. We know how to improve care,and we must now integrate that knowledgemore clearly into everyday practice. The careof older people facing their last days mustfocus on quality of life rather than on simplyprolonging life itself. If decision-makers take into account andapply just some of the recommendations inthis booklet, older people and their familiesand those involved in this project will be great-ly rewarded.

Professor Vittorio VentafriddaEuropean Institute of Oncology (WHO collaborating centre) and Scientific Director, Floriani Foundation

PREFACE

8

It is no surprise that most deaths in Europeancountries occur in people aged over 65, but itis disconcerting to find little health informationor policy concerned with the needs of olderpeople in the last years of life or with the qual-ity of care they receive. Given the changes thatpopulation ageing will bring for societies, therelative neglect of palliative care in health pol-icy is of concern. As life expectancy increases, more people livepast 65 years of age and into very old age,thus dramatically increasing the numbers ofolder people. Patterns of disease in the lastyears of life are also changing. More peopleare dying from serious chronic diseases ratherthan from acute illnesses. Many more people

will therefore need some kind of help withproblems caused by these diseases towardsthe end of life, and the population of peopleneeding care is now simply much older. Traditionally, high quality care at the end of lifehas mainly been provided for cancer patientsin inpatient hospices, but this kind of care nowneeds to be provided for those with a widerrange of diseases. Older people are more like-ly to have highly complex problems and dis-abilities, and need packages of care thatrequire partnership and collaboration betweendifferent groups and across many settings.This raises many issues for the professionalscaring for them, and requires the expertise ofboth geriatric and palliative care in finding

ways of supporting olderpeople and their families.Countries need to develophealth care services to meetthe medical and socialneeds of this group.Effective care must reachinto the hospital, into peo-ple’s homes and into nurs-ing and residential homeswithin the community. The recent WHO reportActive ageing: a policyframework (1) considersmany of the challenges thatpopulation ageing raises forpolicy- and decision-mak-ers, and sets out some ofthe responses required tomaintain the health, partici-pation and security of olderpeople in our societies. Thecurrent document is

INTRODUCTION

designed to be part of that response. It setsout evidence for policies for palliative care forolder people, arguments for integrating pallia-tive care across health services, and modelsfor effective care solutions that will help withthe task. A companion booklet, Palliative care– the solid facts (2) considers why palliativecare is a public health issue. Part I of the document describes the implica-tions of population ageing for palliative careneeds and why these are a public health prior-ity, while Part 2 describes the needs and rightsof older people and their families. Part 3describes the widespread underassessment

and treatment of older peoples’ problems andtheir lack of access to palliative care. Part 4summarizes evidence for effective care solu-tions, including better pain relief, communica-tion and organization of services such ashome care and specialist services. Part 5 dis-cusses the key challenges for policy- anddecision-makers in the governmental, non-governmental, academic and independentsectors, and finally Part 6 provides recom-mendations to improve care and so providethe security and dignity older people needtowards the end of life.

9

1. Active ageing: a policy framework.Geneva, World Health Organization,2002 (document WHO/NMH/NPH/02.8)(www.who.int/hpr/ageing/ActiveAgeingPolicyFrame.pdf,accessed 22 July 2003).

2. Palliative care – the solid facts.Copenhagen, WHO RegionalOffice for Europe, 2004.

References

Ageing populations Populations in European and other developedcountries are ageing (Fig. 1) (1). Improvementsin public health, including the prevention andtreatment of infectious diseases, and otherinnovations have greatly reduced the propor-tion of deaths occurring in childhood and earlyadulthood. More people are now living longerand the proportion of those living beyond 60years has increased, and will increase furtherover the next 20 years (Table 1) (2). The pro-portions of older people will vary in differentcountries. In Japan, for example, more thanone in four will be over 65 years of age com-pared to one in six in the United States.

After reaching the age of 65, people now liveon average another 12–22 years, with Franceand Japan having the highest life expectan-cies. The proportion of people living over theage of 80 is also increasing. In France,Germany, Italy, Japan and the United Kingdom,

0

5

10

15

20

25

30

35

40

1950 1975 2000 2025 2050

WorldMore developed regionsLess developed regions

Per

cent

age

Fig. 1 - Population ageing: population aged 60 and over

Source: World population ageing 1950–2050 (1).

CountryYear

2000 2020

Italy 24 31Japan 23 34Germany 23 29Greece 23 29Croatia 22 26Spain 21 27United Kingdom 21 26France 21 27Switzerland 21 32Norway 20 26Hungary 20 26Slovenia 19 29United States 16 22

Source: United Nations (3).

Table 1 - Percentage of the population aged over 60 in 2000and predictions for 2020

Women consistently live longer than men, withsome figures suggesting that on average theylive as much as six years longer, so that near-ly twice as many women as men live to 80years of age.

10

11. WHY PALLIATIVE CARE FOR OLDER PEOPLE IS A PUBLIC HEALTH PRIORITY

Fig. 2 - Distribution of deaths by age group, England and Wales,1911–2000

Source: Office of National Statistics (4).

4% of the population is now this old (3). It ispredicted that other countries will follow asimilar though less rapid trend. Data on deathsin England and Wales, for example, show adramatic increase in proportion of deaths nowoccurring at much older ages (Fig. 2).

The changing epidemiology of diseaseAs populations age, the pattern of diseasesthat people suffer and die from also changes.Increasingly, more people die as a result ofserious chronic diseases such as heart dis-ease, cerebrovascular disease (includingstroke), respiratory disease and cancer (Table2) (5). It can be difficult to diagnose with cer-tainty any one disease as the main cause ofdeath, as many older people suffer from sever-al conditions together that might all contributeto death. Dementia is an example of one con-dition that is regularly underdiagnosed.

11

DisorderPredicted Previous

ranking 2020 ranking 1990

Ischaemic heart disease 1 1

Cerebrovascular disease(including stroke) 2 2

Chronic obstructivepulmonary disease 3 6

Lower respiratory infections 4 3

Lung, trachea and bronchialcancer 5 10

Source: Murray & Lopez (5).

Table 2 - Main predicted causes of death for 2020 and pre-vious causes in 1990

It is not yet entirely clear whetherincreased longevity is inevitablyaccompanied by longer periods ofdisability towards the end of life(6). Some recent findings and pre-dictions suggest an optimistic pic-ture, with disability declining insuccessive cohorts of people asthey 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 apopulation living with their effects will increase.This means that there will be more peopleneeding some form of help towards the end oflife. Furthermore, women are more likely to suf-fer from several chronic conditions such asdementia, osteoporosis and arthritis, suggest-ing that a greater part of their “extra” survivalmay be affected by disability (8).

The increasing age of caregiversA related aspect of population ageing is adecrease in the proportion of younger peopleas fertility rates decline. The age of informalcaregivers, particularly women who have tra-ditionally been relied on to care for and sup-port people towards the end of life, is thereforealso increasing. As the proportion of working-age to older people declines, fewer women(and men) will be able to find the time to pro-vide support and care (Fig. 3). Families havebecome smaller, more dispersed and varied,affected by increased migration, divorce andexternal pressures. With few exceptions, fam-ilies want to be able to provide the best carethey can for their older members. Health caresystems, however, vary in the degree to whichthey provide the help that caregivers need at

12

home or funding for institutional care for peo-ple near the end of life. Some families witholder members needing full-time care will findthe financial cost and burden unmanageable,and it may be intolerable for older women car-ing for spouses whom they will outlive (9).

Financial implications for health care systemsUndoubtedly, the growing numbers of olderpeople will challenge health care systems toprovide more effective and compassionatecare towards the end of life. However, popula-tion ageing does not necessarily mean that thecost of care for people in the last years of theirlife will eventually overwhelm health servicefunding (10).Health care systems already vary considerablyin the proportion of their gross national prod-uct spent on health care for older people.International comparisons show no consistentrelationship between this proportion and theproportion of older people in the country.Medical advances have increasingly allowed

life to be prolonged at older ages, and this isoften seen as an extra expense. Recent stud-ies in the United States, however, have sug-gested that higher spending is not associatedwith higher quality care, better access to careor better health outcomes or satisfaction withhospital care (11,12). Interviews with seriouslyill patients also reveal that more than one inthree who would prefer palliative or “comfort”care believe their medical care is at odds withtheir preference. This inconsistency betweenpreference and action is associated with high-er health care costs, but also with increasedsurvival at one year (13). It may therefore notbe the role of health care to seek a cheap solu-tion to the issues that technology and ageingpresent, but to provide packages of care forpeople in different situations that properly takeaccount of their wishes.

The range of settings for careIn most countries, most older people live athome, although countries have differentapproaches to providing long-term care forolder people (Fig. 4).In Australia and Germany, 1 in 15 older peoplelive in institutions, compared to 1 in 20 in theUnited Kingdom. The lifetime chance ofreceiving such care may be higher (14). Forexample, in the United States around half ofthose living past the age of 80 spend sometime in a nursing home. In the United Kingdommost funding for inpatient hospice servicescomes through the charitable sector, while inthe United States such services are fundedthrough federal Medicare benefits. The way inwhich different health care settings work andthe effectiveness of the care they provideinevitably affects what other settings can offer.

Fig. 3 - The proportions of working-age to elderly people in eightcountries, 1960–2020 (used with permission from the Common-wealth Fund, New York)

Source: Anderson & Hussey (2).

1. World population ageing1950–2050. New York, UnitedNations Population Division,2002.

2. Anderson GF, Hussey PS. Healthand population aging: a multina-tional comparison. New York,Commonwealth Fund, 1999.

3. United Nations world populationprospects population database.New York, United Nations Population Division, 2002(http://esa.un.org/unpp/index.asp?panel=1, accessed 22 July2003).

4. Office of National Statistics.Mortality statistics. General re-view of the Registrar General onDeaths in England and Wales1997, Series DH1, No. 30.London, Stationery Office, 1999.

5. Murray CJL, Lopez AD. Alterna-tive projections of mortality anddisability by causes 1990–2020.Global burden of disease study.Lancet, 1997, 349:1498–1504.

6. Andrews GR. Promoting healthand function in an ageing popula-tion. British Medical Journal,2001, 322:728–729.

7. Manton KG et al. Chronic dis-ability trends in elderly UnitedStates populations 1982 – 1994.Proceedings of the NationalAcademy of Sciences, 1997,94:2593–2598.

8. Mathers CD et al. Healthy lifeexpectancy in 191 countries. Lan-cet, 2001, 357(9269):1685–1691.

9. One final gift. Humanizing the end of life for women inAmerica. Washington, DC,Alliance for Aging Research, 1998http://www.agingresearch.org/brochures/finalgift/welcome.html,accessed 22 July 2003)

10. Seven deadly myths. Uncoveringthe facts about the high cost ofthe last year of life. Washington,DC, Alliance for Aging Research(www.agingresearch.org/brochure s / 7 m y t h s / 7 m y t h s . h t m l ,accessed 22 July 2003).

11. Fisher ES et al. The implicationsof regional variation in Medicarespending. Part 1. The content,quality and accessibility of care.Annals of Internal Medicine,2003, 138:273–287.

12. Fisher ES et al. The implicationsof regional variation in Medicarespending. Part 2. Health out-comes and satisfaction with care.Annals of Internal Medicine,2003, 138:288–298.

13. Teno JM et al. Medical careinconsistent with patients’ treat-ment goals: association with 1-year Medicare resource use andsurvival. Journal of the AmericanGeriatrics Society, 2002,50:496–500.

14. Ribbe MW et al. Nursing homesin 10 nations: a comparisonbetween countries and settings.Age and Ageing, 1997, 26 (Suppl.2):3–12.

13

Fig. 4 - Place of residence for people >65 years in four countries

Source: Ribbe et al. (14).

References

For example, staff shortages and lack of pal-liative skills for home care and in nursinghomes may increase hospital admissions forcare at the very end of life. Developed countries are therefore facing verysimilar issues, and can learn from each otherin different areas.

14

Palliative care Palliative care was defined by the WorldHealth Organization in 2002 (1), as:

... an approach that improves the quality of life ofpatients and their families facing the problemsassociated with life-threatening illness, throughthe prevention and relief of suffering by means ofearly identification and impeccable assessmentand treatment of pain and other problems, physi-cal, psychosocial and spiritual.

Palliative care provides relief from pain andother distressing symptoms, affirms life andregards dying as a normal process, andintends neither to hasten nor to prolongdeath. Palliative care integrates the psycho-logical and spiritual aspects of patient care,and offers a support system to help patientslive as actively as possible until death. It alsooffers a support system to help the familycope during the patient’s illness and in theirown bereavement. Using a team approach,palliative care addresses the needs ofpatients and their families, including bereave-ment counselling if necessary. It enhancesquality of life, and may positively influence thecourse of the illness. It is applicable early inthe course of the illness with other therapiesthat are intended to prolong life, such aschemotherapy or radiation therapy, andincludes those investigations needed to bet-ter understand and manage distressing clini-cal complications (1,2).Palliative care should be offered as needsdevelop and before they become unmanage-able. Palliative care must not be somethingthat only specialized palliative care teams,palliative care services or hospices offer whenother treatment has been withdrawn. It shouldbe an integral part of care and take place inany setting.

The needs of older people at the end of lifeIt is no surprise that most deaths in Europeanand other developed countries occur in peopleaged over 65. None the less, comparatively lit-tle research has been carried out on theirneeds for palliative care. Older people veryclearly have special needs, because theirproblems are different and often more com-plex than those of younger people. • Older people are more commonly affected

by multiple medical problems of varyingseverity.

• The cumulative effect of these may be muchgreater than any individual disease, and typ-ically lead to greater impairment and needsfor care.

22. PALLIATIVE CARE: THE NEEDS AND RIGHTS OF OLDER PEOPLE AND THEIR FAMILIES

• Older people are at greater risk of adversedrug 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.

The complexity of the problems that older peo-ple have to suffer is revealed by epidemiologicalstudies in which relatives or key informants areasked about the last year of the patient’s life(Fig. 1). These show, in particular, that mentalconfusion, problems with bladder and bowelcontrol, sight and hearing difficulties and dizzi-ness all greatly increase with age (3).The problems that many older people expe-rience in the last year of life are thereforethose of great age and its troubles as wellas those caused by their final illness. Allareas of health care that seek to providecontinuity of care for older people, includ-ing general practice, geriatric medicine andrehabilitation, have recognized these widerneeds for many years. Because it is moredifficult to predict the course of manychronic diseases affecting older people,palliative care should be based on patientand family needs and not on prognosis. Theexamples of cancer, heart failure anddementia illustrate this point.

CancerThe term cancer includes many illnesses thatcause varying problems depending on the siteof the body affected. The disease is more

15

Fig. 1 - Age at death and prevalence of problems reported forthe year before death

Source: Seale & Cartwright (3).

Fig. 2 - Model of a trajectory of an illness due to cancer

Source: Lynn & Adamson (4).

common with increasing age, and three quar-ters of deaths from cancer occur in peopleaged over 65. The most common cancersaffecting women are breast, lung and colorec-tal cancer, while those most commonly affect-ing men are lung, prostate and colorectal can-cer. Breast and prostate cancer have the bestprognoses, followed by colorectal cancer andlung cancer. The prognosis for any individualdepends on the extent of the growth at pres-entation and the response of the tumour totreatment, which may include surgery, radio-therapy and/or chemotherapy. People are notusually severely restricted in their activity untilthe final stages of the illness when the diseasestops responding to treatment (Fig. 2), butthey have many psychological needs andrequire information and support from the timeof diagnosis. In general, studies show thatpatients with cancer want more information,would like to be involved in decision-making,

16

and experience better psychosocial adjust-ment if palliative care and good communica-tion are part of their care from the time of diag-nosis.

Heart failureHeart failure affects more than one in ten peo-ple aged over 70, and the five-year mortality of80% is worse than for many cancers. Thecourse is often one of intermittent exacerba-tion of the symptoms of breathlessness andpain, causing great distress, followed by a

gradual return to, or near to, the previous levelof function (5). Death may follow a gradualdecline or may be sudden during a crisis (Fig. 3). Although there has been considerableprogress in treating symptoms and crises well,patients and their families often have difficultyunderstanding and managing the complexdrug regimes required (6). People with heartfailure seem to have less formal knowledge oftheir diagnosis and prognosis. There appearsto be a lack of open communication fromhealth professionals about this, probablyowing in part to the difficulty of prediction andan unwillingness to raise the subject (7).Families also report poor coordination of careand difficulties in forming a relationship withany single professional (7). These aspects ofcare therefore compare unfavourably to theinformation and support available to peoplewith cancer.

DementiaDementia affects 4% of people over the age of70, increasing to 13% of those over the age of80 (8). The median length of survival fromdiagnosis to death is eight years, and duringthis time there is a progressive deterioration inability and awareness (Fig. 4).Common symptoms include mental confu-sion, urinary incontinence, pain, low mood,constipation and loss of appetite. The physicaland emotional burden on family members iswell documented, as is their grief as theyslowly lose the person they knew. Many ethi-cal issues are also raised by the care of peo-ple with dementia who are unable to commu-nicate their wishes (9). Current issues includethe best use of antibiotics in the treatment ofpneumonia and of feeding tubes for hydrationand nutrition. However, less than 1% of

Fig. 3 - Model of an illness trajectory for organ failure such asheart failure

Source: Lynn & Adamson (4).

Fig. 4 - Model of an illness trajectory for dementia or frailty

Source: Lynn & Adamson (4).

patients in inpatient hospices have dementiaas their primary diagnosis (10).

The needs of caregivers Only relatively recently has the role of peoplecaring for older seriously ill people been fullyappreciated. There is relatively little formalknowledge about their needs, although theirrole varies considerably. It may include carry-ing out intimate tasks such as washing, help-ing people to dress and go to the toilet, orheavy tasks such as lifting. This kind of caringis usually performed by people with close kin-ship ties, often living in the same house andmotivated by love and a desire to keep anolder person out of an institution. However, theburden of care may lead in time to conflictingemotions, dealing with changes in personalityand behaviour, restrictions on the carer’s ownlife, and the drain on financial resources.Long-term care for seriously ill relatives isunpaid and unsupported work that may dam-age the health, wellbeing and financial securi-ty of caregivers themselves (11).

A new way of looking at palliative careAs ageing populations develop new needs,health care systems need to be equally flexible

17

in their response and perceptionsabout palliative care need tochange. Traditionally, palliativecare has been offered most oftento people suffering from cancer,partly because the course of thisillness is more predictable and itis thus easier to recognize andplan for the needs of patients andtheir families. One consequence

of this has been the perception that palliativecare is relevant only to the last few weeks oflife and can be delivered only by specializedservices (Fig. 5).

In fact, people and their families experiencemany problems throughout the many years ofan illness and need help at the time and not atan easily definable point just before death. Theidea that palliative support and care should beoffered alongside potentially curative treat-ment, although obvious to patients and fami-lies, appears a radical idea for some healthprofessionals (Fig. 6). In addition to supporting

Fig. 5 - Traditional concept of palliative care

Source: Adapted from Lynn & Adamson (4).

➞

people with a clearly terminal illness, healthcare systems must find ways of supportingpeople with serious chronic illness or multiplechronic problems over many years and allowfor an unpredictable time of death (12).

Autonomy and choice

18

Everyone has the right to … secu-rity in the event of unemployment,sickness, disability, widowhood,old age or other lack of livelihoodin circumstances beyond his [orher] control.

Article 25, United Nations UniversalDeclaration of Human Rights, 2001

However complex a person’s problems oruncertain their future may be, autonomy is akey human right and maintaining this must bea core ethical value for society and health

Patient-centred care is care thatincorporates respect for patients’values and preferences, providesinformation in clear and under-standable terms, promotes autono-my in decision-making and attendsto the need for physical comfortand emotional support (13).

services. This has recently been incorporatedinto the concept of “patient-centred care” thatmany health care systems are now attemptingto implement, which emphasizes the need tostructure health care in response to people’svalues and preferences.

Fig. 6 - New concept of palliative care

Preferences for place of care and death There is increasing research evidence con-cerning the decisions that people would preferto make about care at the end of their life.

Source: Adapted from Lynn & Adamson (4).

➞

19

1. National cancer control pro-grammes: policies and managerialguidelines, 2nd ed. Geneva,World Health Organization, 2002.

2. Sepulveda C et al. Palliative care:the World Health Organization’sglobal perspective. Journal ofPain and Symptom Management,2002, 24:91–96.

3. Seale C, Cartwright A. The yearbefore death. London, AveburyPress, 1994.

4. Lynn J, Adamson DM. Living wellat the end of life: adapting healthcare to serious chronic illness inold age. Arlington, VA, RandHealth, 2003, used with permis-sion.

5. McCarthy M, Lay M, Addington-Hall JM. Dying from heart disea-se. Journal of the Royal Collegeof Physicians, 1996, 30:325–328.

6. McCarthy M, Addington-Hall JM,Lay M. Communication andchoice in dying from heart dis-ease. Journal of the RoyalSociety of Medicine, 1997,90:128–131.

7. Murray SA et al. Dying of lungcancer or cardiac failure: pro-spective qualitative interviewstudy of patients and carers inthe community. British MedicalJournal, 2002, 325:929–934.

8. Hofman A et al. The prevalence ofdementia in Europe: a collabora-tive study of 1980–1990. Inter-national Journal of Epidemiology,1991, 20:736–748.

9. Albinsson L, Strang P. Existentialconcerns of families of late-stagedementia patients: questions offreedom, choices, isolation, death,and meaning. Journal of PalliativeMedicine, 2003, 6:225–235.

10. Christakis NA, Escare JT Survivalof Medicare patients after enrol-ment in hospice programs. NewEngland Journal of Medicine,1996, 335:172–178.

11. Koffman J, Snow P. Informalcarers of dependants with advan-ced disease. In: Addington-HallJ, Higginson IJ, eds. Palliativecare for non-cancer patients.Oxford, Oxford University Press,2001.

12. Lunney JR et al. Patterns of func-tional decline at the end of life.Journal of the American MedicalAssociation, 2003, 289:2387–2392.

13. Hewitt M, Simone JV, eds.Ensuring quality cancer care.Washington, DC, National Aca-demies Press, 1999.

14. Higginson IJ, Sen-Gupta GJA.Place of care in advanced can-cer: a qualitative systematic lite-rature review of patient prefe-rences. Journal of PalliativeMedicine, 2000, 3:287–300.

References

Most studies have found that around 75% ofrespondents would prefer to die at home.Those recently bereaved of a relative or friendare slightly more likely to prefer inpatient hos-pice care. A range of studies have found thatbetween 50% and 70% of people receivingcare for a serious illness also say they would

prefer home care at the end of life (although asthey approach death, part of this group maycome to prefer inpatient care (14). A core valuefor palliative care from its inception has beenin enabling people to make genuine choicesabout their care.

20

Despite the fact that older people have var-ied needs for health and social care at theend of life, there is already evidence thatmany of their needs are not met. A body ofevidence is mounting to show that olderpeople suffer unnecessarily because ofwidespread underassessment and under-treatment of their problems.

Underassessment of pain One important cause of individual suffering ispain. Community surveys consistently findthat pain is an important symptom in aroundone third of older people (1). Pain makes peo-ple feel less positive about their health, and inaround one fifth is bad enough to limit theireveryday activity (2). However, older peopletend to underreport their symptoms, andphysicians in turn tend to undertreat pain inolder 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 reporteddaily pain found that a quarter received nopainkillers of any type. As age increased agreater proportion of people in pain receivedno pain relief, and judged according to WHO’spain ladder, those over 85 years of age wereleast likely to receive drugs such as opiates(Fig. 1) (3). A regional cross-sectional study inone region in Italy found that 57% of 4121hospital patients interviewed had suffered painin the previous 24 hours. The proportion withpain increased significantly with age (4).Older people with dementia are at particularrisk of poor pain control, because their com-munication problems make them less able toreport pain and it is more difficult for theirattendants to assess it properly.

Lack of information and involvementin decision-makingThere have been consistent findings in the lastfew decades that cancer services often fail tomeet patients’ needs for communication,information and support. Systematic reviewsfind strong evidence that patients value accu-rate information, that many feel they are giveninsufficient information, and that doctors andnurses currently have limited ability to detectpatients’ needs (5). Although there aremethodological problems with measures of“satisfaction” and with international compar-isons because of differences in expectations,survey data do suggest that patients identifysimilar kinds of problems in different countries.

33. EVIDENCE OF UNDERASSESSMENTAND UNDERTREATMENT

Salient issues include information and educa-tion, coordination of care, respect for prefer-ences, emotional support, physical comfort,involvement of family and friends, and conti-nuity and transitions in care (6). Many studiesof people diagnosed with life-threatening ill-ness reveal that the way in which they aregiven information and are involved in decision-making are important determinants of satis-faction with care. A large American cohortstudy of seriously ill patients recently con-firmed that these factors were also importantfor families (7,8).Recent reviews of cancer treatment and carein the United States have revealed widespreadvariation in treatment and care received byolder people, suggesting that they had notreceived information about the full range ofoptions available (9,10).

Lack of home care Despite the preference of many people to becared for and to die at home, in practice deathin hospital remains common in many coun-tries (Fig. 2).The variation in place of death suggests thatthe organization of services plays an importantrole in determining the options that peoplecan consider (Fig. 3). This possibility is further

suggested by detailed studies in the UnitedStates, 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 ofcommunity services were either irrelevant toplace of death or of minimal importance com-pared to the number of hospital beds perhead of population.Cultural values are also important. In Italy, forexample, where the hospice movement is in itsinfancy, it is widely recognized that death in hos-pital is more common in the north of the countrywhile in the south families prefer to care for peo-ple at home. The Netherlands has reportedsome success in providing a range of palliative

21

Fig. 1 - Pharmacological treatment of cancer patients for pain inAmerican nursing homes, according to the WHO pain ladder

Source: Bernabei et al. (3).

Fig. 2 - Preliminary data on place of death by country

Sources: United States: Weizen SMS et al. (11); England and Wales:Office of National Statistics 2000; Switzerland: extrapolations fromFederal Statistics 1985; France: INSERM 1999; Netherlands: CentralOffice of Statistics in the Netherlands, 2000 (M. Ribbe, personalcommunication). Eire: J. Ling, personal comminication. Germany: T.Schindler, personal communication.Note: Data from different countries are collected in different waysand sometimes not at all. This has limited the comparison that canbe drawn, but highlights the need for health care systems acrossEurope to begin to collect this information routinely. Some 15% ofdeaths in the Netherlands also occur in residential homes for theelderly, and these are not included in the graph above.

22

care services in different settings and in allowingpeople to die at home if they wish (13).

been the focus of specialist palliative careand where models of palliative care are only

just beginning to beapplied. Nevertheless,even older people withcancer may not haveaccess to specialist pal-liative care. In Englandand Wales, for example,older people are under-represented in settingssuch as inpatient hos-pices, where high-qualityend-of-life care can beoffered (14–16). Withincreasing age they areless likely to receive carefor their final illness in aninpatient hospice (Fig. 4).A study in Australia foundthat 73% of cancerpatients under 60 years ofage were referred to pal-liative care services com-pared to only 58% ofthose aged over 80 years

(18). Specialist palliative care services in theUnited States reach more non-cancerpatients than many other services, but overallonly 17% of all dying people are reached byfederally funded hospice services (19). In oneanalysis, 30% of patients cared for by inpa-tient hospice services suffered from non-can-cer illnesses, most commonly cardiac failure,chronic obstructive pulmonary disease,stroke, dementia and renal failure (18). Bycomparison, figures for the United Kingdomare far lower (20).There is relatively little information on the

Many countries, however, do not routinelyrecord and collate data on place of death.

Lack of access to specialist servicesOne reason for older people not receiving pal-liative care is that they suffer more often frommany chronic illnesses such as heart failureand dementia, which have not traditionally

Fig. 3 - Percentage of cancer deaths occurring at home, England1994, by Health Authority Source: Higginson IJ Astin P, Doland S, Sen-Gupta G, Jarman B(1997), King’s College London.Note: Wales data not included.

Percentage of cancer deaths occurringat home, England 1994

needs of very old peoplereceiving specialist pallia-tive care in hospital. OneAmerican study found thatpatients aged 80 who werereferred to the specialistpalliative care service inone hospital were morelikely to be women living innursing homes. They wereless likely to have cancerand more likely to havedementia, and this factor was the major influ-ence on their ability to take part in decisionsabout their care and treatment (21).

Lack of palliative care within nursing and residential homes Between 2% and 5% of people aged 65 orolder live in nursing homes. Mainly, however,these are older people who are frail or withchronic physical or mental disability, and diag-noses commonly include stroke, cardiac fail-ure, chronic pulmonary disease, Parkinson’s

disease and dementia. Many people recognizea move to a nursing home as a “last restingplace” before death, and many people living inthese homes will clearly have palliative careneeds (22).In many countries, nursing homes already playan increasing role in caring for frail older peopleat the end of life (Fig. 4). In the United States, forexample, the proportion of people dying innursing homes increased from just under one infive in 1989 to one in four in 1997. About halfspend some time in a nursing home in the lastmonth of life. People dying in nursing homes

23

Fig. 4 - Place of death from cancer in older patients, Englandand Wales, 1999, analysed by Higginson

Source: Office of National Statistics (17).

Fig. 5 - Percentages of older people experiencing pain in long-term care: comparison of five countries

Source: Gambassi et al. (23).

24

are more likely to endure aprolonged period of disabilitybefore death than thosedying at home. Most resi-dents complain of pain, anddata suggest that pain is notwell treated and sometimesnot treated at all (23) (Fig. 5).Up to two thirds of people liv-ing in nursing homes areaffected by cognitive impair-ment and this complicatesthe assessment and recogni-tion of pain (J.M. Teno,unpublished observations,2002).In some countries, nursinghomes run rehabilitation pro-grammes. The system in theNetherlands appears to beparticularly well developed,with palliative care units sited in 13% of nurs-ing homes. In the United States, nursing homepatients enrolled in palliative care programmesdelivered by hospice services received betterpain control than other residents (24).

Generally, however, little is known about thequality of end-of-life care received in nursinghomes, and issues of concern include staffshortages, high staff turnover and lack of pal-liative care skills (22).

25

1. AGS Panel on Persistent Pain inOlder Persons. The managementof persistent pain in older per-sons. Journal of the AmericanGeriatrics Society, 2002,50:S205–S224.

2. Allard P et al. Educational inter-ventions to improve cancer paincontrol: a systematic review.Journal of Palliative Medicine,2001, 4):191–203.

3. Bernabei R et al. Management ofpain in elderly persons with can-cer. Journal of the AmericanMedical Association, 1998,279:1877–1882.

4. Costantini M, Viterbori P, Flego G.Prevalence of pain in Italian hos-pitals: results of a regional cross-sectional survey. Journal of Painand Symptom Management,2002, 23:221–230.

5. NHS Centre for Reviews andDissemination. Informing, com-municating and sharing decisionswith people who have cancer.Effective Health Care Bulletin,2000, 6:6.

6. Coulter A, Cleary PD. Patients’experiences with hospital care infive countries. Health Affairs,2001, 20:244–252.

7. Lynn J et al. Perceptions by fam-ily members of the dying experi-ence of older and seriously illpatients. Annals of InternalMedicine, 1997,126:97–106.

8. Baker R et al. Family satisfactionwith end-of-life care in seriouslyill hospitalized adults. Journal ofthe American Geriatrics Society,2000, 48(5, Suppl.):61–69.

9. Foley KM, Gelband H, eds.Improving palliative care for can-cer. Washington, DC, NationalAcademies Press, 2001.

10. Hewitt M, Simone JV, eds.Ensuring quality cancer care.Washington, DC, NationalAcademies Press, 1999.

11. Weizen SMS et al. Factors asso-ciated with site of death: anational study of where peopledie. Medical Care, 2003,41:323–335.

12. Facts on dying 2002–Brown atlasof dying. Providence, RI, BrownUniversity, 2002 http://www.chcr.brown.edu/dying/brownat-las.htm, accessed 23 July 2003).

13. Francke AL. Palliative care for ter-minally ill patients in theNetherlands. The Hague, Ministryof Health, Welfare and Sport,2003.

14. Gray JD, Forster DF. Factorsassociated with utilization of spe-cialist palliative care services: apopulation-based study. Journalof Public Health Medicine, 1997,19:464–469.

15. Addington-Hall JM, Altman D,McCarthy M. Who gets hospicein-patient care? Social Sciencea n d M e d i c i n e , 1 9 9 8 ,46:1011–1016.

16. Mortality statistics, general.Series DH1 No. 33, Table 17.London, Office of NationalStatistics, 2000 (http://www.sta-tistics.gov.uk/downloads/themehealth/DH1 33/DH1 33.pdf,accessed 23 July 2003).

17. Office of National Statistics.Mortality statistics. Generalreview of the Registrar Generalon Deaths in England and Wales1997, Series DH1, No. 30.London, Stationery Office, 1999.

18. Hunt RW et al. The coverage ofcancer patients by designatedpalliative care services: a popula-tion-based study, SouthAustralia, 1999. PalliativeMedicine, 2002, 16:403–409.

19. Haupt BJ. Characteristics of hos-pice care users: data from the1996 National Home and HospiceCare Survey. Advance Data,1998, 28(299):1–16.

20. Eve A, Higginson IJ. Minimumdataset activity for hospice andhospital palliative care services inthe UK 1997/98. PalliativeMedicine, 2000, 14:395–404.

21. Evers MM, Meier DE, MorrisonRS. Assessing differences in careneeds and service utilization ingeriatric palliative care patients.Journal of Pain and SymptomManagement, 2002, 23:424–432.

22. Hockley J, Clark D, eds. Palliativecare for older people in carehomes. Buckingham, OpenUniversity Press, 2002.

23. Gambassi G et al. Cross-nationalcomparison of predictors of painin elderly in long-term care. In:[Abstracts] Annual Meeting of theAmerican Geriatrics Society –American Federation for AgingResearch, Philadelphia, PA, May19–23, 1999. New York, NY,American Geriatrics Society,1999:159.

24. Millar S et al. Does receipt of hos-pice care in nursing homesimprove the management of painat the end of life? Journal of theAmerican Geriatrics Society,2002, 50:508–515.

References

26

As the hospice and palliative care movementhas expanded, evidence has grown for theeffectiveness of aspects of the treatment andcare it has promoted. Systematic reviews ofthe evidence, including studies on people withcancer from many different countries, nowreport consistently the importance of certainkey areas of care. The evidence is currentlystrongest for simple measures such as painrelief, good communication and coordinatedteamwork to satisfy preferences for place ofcare. There is also preliminary evidence for theapplication of models of palliative care forpeople with other illnesses (1).

Palliative care skills of individual health professionalsPain and symptom controlThe effectiveness of pain control methods hasbeen established for over 30 years, and awide variety of drugs is available to controlpain associated with cancer and other illness-es. Observational studies show that, whenclinical guidelines on pain control are fol-lowed, 70–97% of patients with advancedcancer gain adequate pain relief. Research onimplementation has been relatively neglected,but education can improve the knowledgeand attitudes of staff about pain (though notnecessarily the levels of pain suffered bypatients). There is most evidence for briefinterventions, whereby nurses encouragepatients to complete pain diaries and doctorsuse explicit strategies to ensure that pain isassessed daily and that drug dosages areadjusted accordingly (2). By comparison, thestudy of pain using standardized measures inolder people with other illnesses has been rel-atively neglected.

Communication skillsEffective communication between doctors andpatients is associated with a range of healthoutcomes including, most commonly,improvements in psychological health, symp-toms and function and better control of pain,blood pressure and blood glucose level (3).The ability of health professionals to commu-nicate effectively with families and involvethem in decision-making consistently emergesas an important contributor to their satisfac-tion with care at the end of life (4). The com-munication skills of health professionals canbe improved by using feedback from video-taped consultations and discussion, but theynevertheless need further help to sustainthese new skills in everyday practice (5).

Giving informationRecordings or summaries of key consultationsare of benefit to most cancer patients. Theylead to improved knowledge and recall ofinformation without causing psychologicalproblems (6) and to greater satisfaction (7).Nevertheless, these must be used sensitivelywith patients whose prognosis is poor, andaccount must be taken of whether or not theywish to know the full facts (5). In general, deci-sion-making aids can help professionals dealwith the concerns of patients, explain theirtreatment and improve their satisfaction (5,8).

Providing holistic careSpiritual supportSpiritual and religious needs are highly per-sonal and salient to many people at the end oflife, and therefore need to be part of palliativecare services. There is some preliminary evi-dence that spiritual belief can affect the way in

44. EVIDENCE FOR EFFECTIVE CARESOLUTIONS

which patients cope, and even the outcome ofthe disease. It can also affect the way in whichrelatives cope with bereavement (9,10).

Psychological supportA wide range of psychological interventionshas been tested in over 150 randomized trialsover 40 years. The results were mixed andtended to vary by site of disease and follow-upperiod, with positive outcomes not being sus-tained over time. Most evidence exists foradjuvant psychological therapy, but morework is required to identify specific needs andhow to target patients for intervention (9,11).

Complementary therapy In the general population, complementarytherapies tend to be used by younger womenwho perceive them as natural and allowing

greater control. Despite interest in their use inpalliative care, studies have so far been ham-pered by a lack of standard definitions, smallsample sizes, poor response rates and inade-quate measurement, and thus no adequateconclusions have been drawn (9).

Coordinating care across different settings Transferring informationAn important issue in the care of older peopleis the transfer of information between settings,and between those with responsibility formedical care and those providing medical andsocial support services in the community.Current mechanisms are often inadequate and– although there is little empirical research inthe area – a “key worker”, “case manager” or“case coordinator” seems the most effectiveway of transferring information (9,12).

Meeting preferences for home careA second issue is whether improved coordina-tion of care can allow more patients to die athome if they so desire. Trials of differentapproaches to coordinating hospital and com-munity services are now finding that a higherproportion of people can be helped to die athome if they wish. There is also evidence thatthe quality of life of their caregivers can beimproved if support is provided and well coor-dinated (10).

Supporting families and caregiversA range of services has been developed,including home care, respite and “sitting”services, activities within social networks,support groups and individual psychotherapyor education. Carers generally report satisfac-tion with home care and, if they are willing to

27

28

leave the patient, valuerespite and sitting services.The few who take up groupactivities or support groupsvalue the chance to talkopenly with others, but for-mal evaluation of their ben-efit is weak. Further work isneeded to explore the prior-ities of caregivers and whatit is realistic for services toachieve for them (13). Hereit is important to rememberthat giving caregivers theimpression of being lis-tened to and appreciated isin itself an important goal ofcare.Anxiety and depression are normal responsesto loss and the threat of loss in lifelong rela-tionships. Health professionals who meet peo-ple at the very end of these relationships maynot be able to influence these basic respons-es. Nevertheless, they can avoid adding asense of isolation or confusion by providingcare that appears coherent and coordinatedand that relieves the patient’s suffering.

Specialist palliative careSpecialist palliative care teams A common model for delivering palliative carehas been to concentrate expertise in multipro-fessional teams that work in hospitals, inpa-tient units such as hospices or within the com-munity. These teams usually deal with aselected group of patients, referred to them byother teams of professionals, who have themost complex needs for symptom control,communication and coordination of care.

Despite conflicting findings in initial reviews,meta-analysis now reveals benefits for bothpatients and families in terms of the control ofpain and other symptoms and the satisfactionexpressed by patients and their families (com-bined odds ratio 0.38, 95% CI 0.33–0.44) (Fig.1) (9,14).

Specialist palliative day careThere is evidence that patients value attendingpalliative day care units, where they can meetother patients, talk to staff and becomeinvolved in activities. There is no evidence asyet, however, that such attendance affectsother outcomes such as quality or life orsymptom control (9).

Bereavement supportIn several studies, the relatives of patientsdying in the care of specialist palliative careservices reported fewer psychological symp-toms and unmet needs than those of patients

receiving standard care (9). Assessing the needfor support and counselling after bereavementis regarded as an important part of palliativecare. There is relatively little evidence, however,for the predictive power of assessments, thetargeting of individuals or the benefit of individ-ual therapy, although these aspects are verydifficult to evaluate (9,15).

Developing palliative care services for non-cancer patientsMultidisciplinary teams Multidisciplinary teams are one way of caringfor people with complex problems, andalready have an established role in geriatricmedicine and the care of people with specificdisorders. For example, team management ofpeople with cardiac failure can reduce their

hospital admissions andprolong survival (16).

Specialist nursesOn balance, studies so farshow that specialist nursesupport can also helppatients with heart failureand improve continuity ofcare (17,18). Patients in thecare of respiratory nurseslive longer but do not havea better quality of life; theynone the less place valueon home visits from nurses(19).

Hospice services forpatients with dementia

Pilot studies on the provision of palliativecare and hospice services for patients in theend stages of dementia suggest they canmake patients more comfortable and helpcarers (20).

Advanced care planning There has recently been considerable interestin advanced care planning, whereby peoplecan decide the care they would wish to have ifthey were to be diagnosed with a life-threat-ening illness. Such plans provide a writtenrecord of people’s desires and preferences forhealth professionals and their relatives to fol-low if they become unable to make these deci-sions for themselves. Despite hopes thatthese might reduce the number of unwantedinterventions at the very end of life, there is noevidence that such plans are always followedor that they influence the use of resources or

29

Fig. 1 - Cumulative effect size of palliative care teams, by coun-try of study

Source: Higginson et al. (14).

pain

quality of life

other symptoms

patient satifaction

home death

carer satisfaction

carer morbidity

carer satisfaction

carer morbidity

service-related

30

costs (21). More comprehensivemethods are now beingexplored. Equally, there is littleevidence for the effectiveness ofintensive care in meeting the pal-liative care needs of older people(22).

Generalizability of findingsResearch on meeting the needsof people experiencing anddying from diseases other thancancer is less well advanced.There is little specific informationon effective methods for nursingor residential homes to meet pal-liative care needs, or of theneeds of people aged over 80 inany setting. In general, there is also a lack ofevidence from implementation research onhow to get established evidence translatedinto practice. The comparatively uncertainprognoses of non-cancer illnesses make itmore difficult to plan services. Nevertheless,simple measures such as good pain relief,communication, information and coordinatedcare from skilled professionals are effective in

reducing symptoms and suffering. It is unlike-ly that these experiences differ widely by dis-ease or across countries. This strongly sug-gests that it is time to make a more active andconcerted effort to improve palliative care,concentrating on the implementation of simpleeffective measures based on the complexityand seriousness of the illness and on theneeds of patient and family.

31

1. Davies E. What are the appropri-ate services and support toaddress the palliative care needsof older people? Report to theHealth Evidence Network.Copenhagen, WHO RegionalOffice for Europe, 2003.

2. Allard P et al. Educational inter-ventions to improve cancer paincontrol: a systematic review.Journal of Palliative Medicine,2001, 4:191–203.

3. Stewart MA. Effective physician-patient communication andhealth outcomes: a review.Canadian Medical AssociationJournal, 1996, 152:1423–1433.

4. Baker R et al. Family satisfactionwith end-of-life care in seriouslyill hospitalized adults. Journal ofthe American Geriatrics Society,2000, 48(Suppl 5):61–69.

5. Gysels M, Higginson IJ, eds.Improving supportive and pallia-tive care for adults with cancer.Research evidence. Manual.London, National Institute forClinical Excellence, 2002(www.nice.org.uk, accessed 23July 2003).

6. Scott JT et al. Recordings orsummaries of consultations forpeople with cancer (CochraneReview). The Cochrane Library,2003, No. 2 (http://www.update-software.com/abstracts/ab001539.htm, accessed 23 July 2003).

7. McPherson C, Higginson I, HearnJ. Effective models for givinginformation in cancer: a system-atic review of randomized con-trolled trials. Journal of PublicHealth Medicine, 2001,23:277–234.

8. Lewin SA et al. (2001). Interven-tions for providers to promote apatient-centred approach in clini-cal consultations (CochraneReview). The Cochrane Library,2003, No. 2 (http://www.update-software.com/abstracts/ab003267.htm, accessed 23 July 2003).

9. Gysels M, Higginson IJ, eds.Service configuration guidanceon supportive and palliative carefor those affected by cancer.Research evidence. Manual.London, National Institute forClinical Excellence, 2003 (www.-nice.org.uk, accessed 23 July2003).

10. Cohen SR et al. Validity of theMcGill quality of life questionnairein the palliative care setting: amulti-center Canadian studydemonstrating the importance ofthe existential domain. PalliativeMedicine, 1997, 11:3–20.

11. Newell SA, Sanson-Fisher RW,Savolein NJ. Systematic reviewof psychological therapies forcancer patients: overview andrecommendations for futureresearch. Journal of the NationalCancer Institute, 2002,94:558–584.

12. Payne S et al. The communica-tion of information about olderpeople between health and socialcare practitioners. Age andAgeing, 2002, 31:107–117.

13. Harding R, Higginson IJ. What isthe best way to help caregivers incancer and palliative care? Pallia-tive Medicine, 2003,17:63–74.

14. Higginson IJ et al. Is there evi-dence that palliative care teamsalter end-of-life experiences ofpatients and caregivers? Journalof Pain and SymptomManagement, 2003, 25:150–168.

15. Kato PM, Mann T. A synthesis ofpsychological interventions forthe bereaved. Clinical PsychologyReview, 1999,19:275–296.

16. Rich MW et al. A multidisciplinaryintervention to prevent the read-mission of elderly patients withcongestive heart failure. NewEngland Journal of Medicine,1995, 333:1213–1214.

17. Gibbs, JS. Heart disease. In:Addington-Hall JM, Higginson IJ,eds. Palliative care for non-can-cer patients. Oxford, OxfordUniversity Press, 2001.

18. Blue L et al. Randomised con-trolled trial of specialist nurseinterventions in heart failure.British Medical Journal, 2001,323:715–718.

19. Shee C. Respiratory disease. In:Addington-Hall JM, Higginson IJ,eds. Palliative care for non-can-cer patients. Oxford, OxfordUniversity Press, 2001.

20. Hanrahan P, Lutchins DJ, MurphyK. Palliative care for patients withdementia. In: Addington-Hall JM,Higginson IJ, eds. Palliative carefor non-cancer patients. Oxford,Oxford University Press, 2001.

21. Teno JM et al. Do advance direc-tives provide instructions thatdirect care? Journal of theAmerican Geriatrics Society,1997, 45:508–512.

22. Baggs JD. End-of-life care forolder adults in ICUs. AnnualReview of Nursing Research,2002, 20:181–229.

References

32

The challengeAs life expectancy increases, and more peoplelive past the age of 65 years and into very oldage, patterns of disease at the end of life arechanging. More people are dying from multipleserious chronic diseases rather than acute ill-nesses, thus challenging health care systemsto provide more effective and compassionatecare during the last years of life. More peopleneed some kind of help with problems causedby chronic heart, respiratory and cerebrovas-cular diseases, as well as cancer, and the pop-ulation of people needing care at the end of lifeis now simply much older and much larger.A considerable body of evidence shows thatolder people already suffer unnecessarilyowing to widespread underassessment andundertreatment of their problems and a lack ofaccess to palliative care. As a group, olderpeople have many unmet needs, experiencemultiple problems and disabilities, and requiremore complex packages of treatment andsocial support. They also suffer from commonserious chronic diseases other than cancer,while the predominant focus of palliative carein most countries has been on cancer.

Evidence for effective care solutionsReviews of evidence from many countriesshow the importance of core aspects of pallia-tive care for cancer patients and the effective-ness of simple measures in improving patientoutcomes. These include adequate pain andsymptom relief, good communication andinformation, and coordinated care from teamsof skilled professionals who help meet prefer-ences for care. Although the comparativelyuncertain prognoses of other illnesses maymake it more difficult to plan services based

on prognosis, patients experiencing non-can-cer illnesses have similar needs and will bene-fit equally from the same measures. This sug-gests that it is time to make a more active andconcerted effort to improve care, by concen-trating on simple proven measures based onpatient and family needs and the complexityand seriousness of the illness.

Barriers to overcomeThe growth of the hospice and palliative caremovement over the last 30 years has demon-

55. THE CHALLENGE FOR HEALTH POLICY- AND DECISION-MAKERS

strated the effectiveness of palliative care inimproving care towards the end of life. Thedevelopment of special expertise in caring forpeople with cancer and their families isendorsed by the public support of its work. Asubstantial body of opinion recognizes thatthis model of care now needs to be adaptedfor other patients on the basis of need ratherthan diagnosis or prognosis. However, it takes more than knowledge andgood will or good intentions to translate thisinto action. Achieving better palliative care forolder people requires a willingness to listen tothem and their families, imagination, and adetermination to remove barriers at all levels ofhealth care systems. These barriers include: • a lack of awareness and knowledge of the

scale of the problem;• a lack of health policies for palliative care,

both for older people and for the diseasesthey commonly suffer from;

• a lack of integration of palliative care acrosshealth care settings and services;

• a lack of palliative care ethos or skills in thesettings where older people are actuallycared for and die;

• complacency and age discrimination aboutthe need to provide high-quality, end-of-lifecare for older people;

• faulty assumptions about the needs of olderpeople and their desire or ability to copewithout special forms of help;

• failure to implement simple proven effectivemeasures;

• the complexity of linking care packagesacross different settings and between healthand social support and care; and

• a lack of resources and outdated patterns ofcare and health systems delivery.

Potential solutions: a public health policy approachThe scale of the need for palliative care forthe growing population of older adults sug-gests that it requires a multifaceted approachand the application of public health methodsto make an impact. This means identifyingneeds within populations, monitoring trendsand the effectiveness of interventions,increasing professional education and publicawareness, and setting up systems that cansupport the changes needed in behaviourand practice.Palliative care for older people must beincluded within health service planning at anational level. Each country must decide howmuch priority and resources to give to thisarea, but it must be defined clearly. There isevidence, for example, that funding hospicesin the United States has led to financial sta-bility, thus encouraging long-term planningincluding care for non-cancer patients.Policies for palliative care need to be linkedto other health care policies for older people,and to specific diseases such as heart dis-ease and dementia.

Ensuring palliative care is integral to healthservicesPolicy-makers need to ensure that palliativecare is integral to the work of all heath servicesand is not seen as just an “add-on extra”. Thisinvolves promoting effective care, monitoring,and rewarding health organizations for improv-ing quality. Effective palliative care for olderpeople also requires partnerships betweengeriatric medical teams, nursing homes andpalliative care staff. The challenge of integrat-

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ing palliative care more fully across all settingsand health services is already being met insome countries. The Netherlands health policyfor palliative care, for example, provides someexamples of care from which others couldlearn, and suggests that change is possible. Current variation within countries also sug-gests that change is possible. A range of qual-ity improvement methods has been developedto improve palliative care and these are cur-rently being tested in different settings. In theUnited Kingdom, for example, national auditsof the care of hospital patients with strokehave already resulted in wide-rangingimprovements in care. Exciting preliminaryresults are emerging from using continuousquality improvement methods in the UnitedStates. Some reliable instruments, includingthe Support TeamA s s e s s m e n tSchedule (STAS),The ResidentA s s e s s m e n tInstrument (RAI)and the Com-p r e h e n s i v eG e r i a t r i cA s s e s s m e n t(CGA) have beendeveloped. Othermethods beingd e v e l o p e dinclude routinelycollecting infor-mation frombereaved relativesand feeding thisback into careplanning.

Improving the application of palliative care skills across all settings Much of the suffering of older people could bealleviated if currently available treatmentswere used more widely. One problem seemsto be lack of training in pain and symptomcontrol, and a reluctance to use opioid drugsin primary and secondary care outside spe-cialist settings. Tackling this will involveexpanding education and training for staff pro-viding care in all settings, including residentialand nursing homes as well as hospitals andthe patient’s own home.

Identifying gaps in the research base Needs during the last years of life have notbeen a research priority so far, and in general

much more money is spent on research intopotentially curative treatment. This means thatthe evidence base for palliative care is incom-plete. In the United Kingdom, for example, only0.18% of the cancer research budget is spenton palliative care or end-of-life research. In gen-eral, there is more research available describingthe needs of people towards the end of life, andinterventions that might provide a potentialsolution, as opposed to formal evaluations oftheir effectiveness. Randomized controlled tri-als, often seen as the gold standard ofresearch, are much more difficult to undertakeamong such vulnerable populations.

Another difficulty is that many of the mosteffective interventions involve changing thebehaviour of health professionals and theorganization of their work. This barrier to theimplementation of proven effective methodsapplies to all health care, but is particularlyformidable in the effort to extend palliativecare to older people with serious chronic ill-ness. This makes the field more complexthan those in which single effective tech-nologies may be introduced. Research anddevelopment urgently needs to tackle thecomplexities of implementing improvementsin this area.

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Health professionals need to:1. ensure they are adequately trained in the

palliative care of older people, includingpain and symptom management, commu-nication skills and care coordination;

2. ensure that older people with palliativecare needs are regarded as individuals,that their right to make decisions abouttheir health and social care is respected,

and that they receive the unbiased infor-mation they need without experiencingdiscrimination because of their age; and

3. ensure that their organizations work in acoordinated fashion with other statutory,private or voluntary organizations that mayhelp older people needing palliative care.

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Policy- and decision-makers need to:

1. recognize the public health implications ofageing populations with palliative careneeds, and that substandard care towardsthe end of life is a public health problem;

2. undertake, at national or regional popula-tion level, a “quality audit” of palliative careservices delivered to older people in nurs-ing and residential homes, hospitals, hos-pices and at home, including staff qualifica-tions in these institutions, and define amethod to “track” improvements in care;

3. invest in the development of small coredata sets that link different care settingslocally, and that can be used to identifyand monitor the needs of older people;

4. invest in audit and quality improvementmethods to improve the care provided forlocal populations, and reward the involve-ment of health organizations, includingnursing homes, in audit and qualityimprovement schemes;

5. ensure that multidisciplinary servicesshown to meet the needs of older peoplefor palliative care are adequately funded,rewarded and supported;

6. ensure that the training of health care pro-fessionals includes sufficient time devotedto palliative medicine and the care of olderpeople, and that professionals are sup-ported to keep up to date;

7. demand and invest in high standards inpalliative care for older people, includingpain and symptom management, commu-nication skills and coordination of care;

8. act against ageist stereotypes that affectwhether older people are offered palliativecare when they need it;

9. involve older people – as the users ofservices – in making decisions about thetypes and mix of services they want avail-able to them towards the end of life andinto bereavement; and

10. provide information about the range ofservices available, including for symptomcontrol, and their effectiveness for olderpeople who are facing life-threatening,chronic or progressive illness.

66.RECOMMENDATIONS

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Those funding research need to:1. invest in research into the geographical

variation between and within countries inthe palliative care that older peoplereceive;

2. invest in creative research into the barriersto accessing palliative care, the etiologyand management of non-cancer pain andother symptoms in older people, theirsubjective experience of care, the psy-chological and social needs of differentcultural groups, the testing of advancecare planning that promotes patient-directed care, and meeting the needs offrail older people;

3. promote collaboration in researchbetween palliative and geriatric medicinein the areas of palliative care, and theinclusion of older people in all kinds ofinnovative research on physical interven-tions, including drug treatment;

4. invest in research into effective palliativecare and treatment for older peopleacross a range of conditions, making thisa significant component of researchinvestment;

5. promote the development of standardizedassessment tools for palliative care inolder people, and how these and meth-ods such as “report cards” might bemeaningfully used across different coun-tries; and

6. ensure that research in care and treat-ment does not exclude older people.

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AustraliaProfessor Ian Maddocks andDeborah ParkerFlinders University, Adelaide

AustriaDr Franz ZdrahalCaritas of Vienna, Vienna

BelgiumAnne-Marie De LustFederation of Palliative Care for Flanders, Wemmel

Anne-Françoise NolletFederation of Palliative Care for Wallone, Namur

CanadaAlbert J KirshenTemmy Latner Centre for Palliative Care, Toronto

CroatiaProfessor Anica JusicCroatian Society for Hospice andPalliative Care, Zagreb

Ana StambukFaculty of Law, Zagreb

CyprusJane KakasCyprus Association of CancerPatients and Friends, Nicosia

Dr Sophia PantekhiCAS Arodaphnousa, Nicosia

FranceJacqueline Bories and Marie Claire Garnier Société Françaised’Accompagnement et SP, Paris

Dr Aude Le DevinahMinistry of Health, Paris

Paulette LeLannIRFAC, Rouen

Dr Christophe TrivalleHôpital Paul Brousse, Villejuif

GermanyProfessor Eberhard KlaschikCentre for Palliative Medicine,Bonn

Thomas SchindlerNord-Rhein-Westfalen, Geldern

GreeceDr Kyriaki MystakidouUniversity of Athens

Professor Athina VadaloucaArieton Hospital, Athens

HungaryProfessor Katalin HegedusSemmelweis University ofMedicine, Budapest

IrelandJulie LingDepartment of Health andChildren, Dublin

Avril 0’SullivanIrish Cancer Society, Dublin

IsraelRonit BeharThe Hospice, Sheba MedicalCentre, Ramat Gan

Dr Michaela BerkovitchOncological Hospice, Haih ShebaMedical Centre, Tel Hashomer

ItalyDr Roberto BernabeiCentro Medicina InvecchiamentoUniversità Cattolica del SacroCuore, Rome

Dr Massimo CostantiniIstituto Nazionale per la Ricercasul Cancro, Genova

Dr Franco De ConnoIstituto Nazionale per lo Studio e la Cura dei Tumori,Milan

Claude Fusco-KarmanLega Italiana per la Lotta contro i Tumori, Milan

Daisy MaitilassoSocietà Italiana di Cure Palliative,Milan

Dr Carla RipamontiIstituto Nazionale per lo Studio e la Cura dei Tumori,Milan

Dr Franco ToscaniIstituto MaestroniIstituto di Ricerca in MedicinaPalliativa Onlus, Cremona

NetherlandsDr Luc DeliensVU University Medical Centre,Amsterdam

Dr Ger PalmboomNPTN, Bunnik

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

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NorwayDr Dagny Faksvag HaugenHaukeland University Hospital,Bergen

RomaniaDr Gabriela Rahnea-NitaSt Luca Hospital, Bucharest

SloveniaUrska LunderPalliative Care DevelopmentInstitute, Ljubljana

SpainMaria Jose Garcia LopezGrupo Aran, Madrid

SwedenDr Carl Johan FurstKarolinska Institute, Stockholm

Professor Peter StrangKarolinska Institute, Stockholm

SwitzerlandDr Laura Di PollinaPain and Palliative CareProgramme, Geneva

United KingdomProfessor Julia Addington-HallKing’s College London

Tony Berry, Peter Cardy and Gill OliverMacmillan Cancer Relief, London

Professor David ClarkUniversity of Sheffield

Dr Deirdre CunninghamSouth East London StrategicHealth Authority

Baroness Ilora FinlayUniversity Medical School of Wales, Cardiff

Katherine A FroggattUniversity of Southampton

Professor Sîan GriffithsPresident, Faculty of PublicHealth Medicine, London

Dr Andrew HoyPresident, Association of Palliative Medicine,Southampton

Tom Hughes HalletMarie Curie Cancer Care, London

Professor Ross LawrensonUniversity of Surrey, Guildford

Dr Michael PearsonRoyal College of Physicians,London

David PrailHelp the Hospices, London

Professor Mike RichardsDepartment of Health, London

Eve Richardson and Peter Tebbit National Council for Hospicesand Palliative Care Services,London

Gail SharpMarie Curie Cancer Care, London

John Wyn OwenNuffield Foundation, London

United States of AmericaDr David CaserattUniversity of Pennsylvania,Philadelphia

Mary Callaway Open Society Institute, New York

Dr Christine CasselAmerican Board of Internal Medicine, Philadelphia

Dr Richard Della PennaKaiser, San Diego

Dr Frank FerrisSan Diego

Professor David MechanicRutgers University, New Jersey

Dr Diane E. MeierMount Sinai School of Medicine,New York

Dr Greg SachsSchool of Medicine, University of Chicago

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The Floriani Foundation was established in 1977with a donation from Virgilio and Loredana Floriani,and was the first in Italy to set up free home carefor terminally ill patients. The aim of the Foundationis the dissemination and application of palliativecare to assist terminally ill patients, care that takesaccount of all aspects of the patient’s suffering:physical, psychological and social. TheFoundation’s other concept is that patients andtheir families are followed at every step along thefinal difficult journey.

With the aim of spreading the application of pallia-tive care in Italy and throughout the world, theFloriani Foundation has promoted and supportedthe setting up of the European Association forPalliative Care, the Italian Association for PalliativeCare and the Italian School of Palliative Care.

The Floriani Foundation also founded theAssociation of Friends of the Floriani Foundation,whose purpose is, in addition to promoting andorganizing events, to raise funds and carry out theaims of the Foundation.

World Health OrganizationRegional Office for Europe

Scherfigsvej 8,DK-2100 Copenhagen Ø,

DenmarkTelephone: +45 39 17 17 17

Fax: +45 39 17 18 18E-mail: postmaster@euro.who.int

Web site: www.euro.who.int

Better Palliative Care for Older PeopleThe EuropeanAssociation ofPalliative Care

The Open SocietyInstitute Network

Public HealthProgramme

King’s CollegeLondon

The EuropeanInstitute ofOncology

FONDAZIONE FLORIANI