PALLIATIVECARE

THE SOLIDFACTS

The EuropeanAssociation ofPalliative Care

The Open SocietyInstitute Network

Public HealthProgramme

King’s CollegeLondon

The EuropeanInstitute ofOncology FONDAZIONE FLORIANI

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

ABST

RACT

Populations in European and other developed countries are ageing, and morepeople are now living with the effects of serious chronic illnesses towards theend of life. Meeting their needs presents a public health challenge.Traditionally, palliative care towards the end of life has been offered mostly tocancer patients, but must now be offered for a wider range of serious illnessesand integrated more broadly across health care services. This booklet is partof the WHO Regional Office for Europe’s work to present evidence for healthpolicy- and decision-makers in a clear and understandable form. It explainswhy health services should provide good quality palliative care for all peoplefacing serious chronic illness. It provides evidence for the effectiveness of pal-liative care, shows how it can be improved, and explains the need to ensurefull access. The booklet also explores the varied cultural and health care con-texts in different countries, and reveals how to educate professionals and thepublic about these issues. A companion booklet entitled Better palliative carefor older people considers this vulnerable group in more detail. Both bookletsseek to broaden awareness, stimulate debate and promote action.

Acknowledgements for photographs

Front cover: Davide Zinetti, Milan, Italy

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, 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, USAJeannie Tweedie, The Art of Dying, King’s College London, UKDavide Zinetti, Milan, Italy

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

PALLIATIVECARE

Edited by Elizabeth 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

THE SOLIDFACTS

KEYW

ORDS

END OF LIFE CAREDEATH AND DYINGPALLIATIVE CAREPUBLIC HEALTHLIFE-THREATENING ILLNESSSERIOUS CHRONIC ILLNESSSUPPORTIVE CARETERMINAL CARE

ISBN 9289010916

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

permissions@euro.who.int (for permission to reproduce them)pubrights@euro.who.int (for permission to translate them)

• 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 toreproduce or translate 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 opin-ion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city orarea or of its authorities, or concerning the delimitation of its frontiers or boundaries. Where the designation “country orarea” appears in the headings of tables, it covers countries, territories, cities, or areas. Dotted lines on maps representapproximate border lines for which there may not yet be full agreement.

CONT

ENTS

Contributors 5

Foreword and Preface 6

Introduction 8

1. Changing populations 10

2. Emerging needs towards the end of life 12

3. Palliative care 14

4. Rights and options 16

5. Effective palliative care 18

6. Vulnerable groups 20

7. Improving services 22

8. Educating professionals 24

9. Educating the public 26

10. Research and development 28

The World Health Organization was estab-lished in 1948 as a specialized agency of theUnited Nations serving as the directing andcoordinating authority for international healthmatters and public health. One of WHO’sconstitutional functions is to provide objec-tive and reliable information and advice in thefield of human health, a responsibility that itfulfils in part through its publications pro-grammes. Through its publications, theOrganization seeks to support nationalhealth strategies and address the mostpressing public health concerns.

The WHO regional Office for Europe is one ofsix regional offices throughout the world,each with its own programme geared to theparticular health problems of the countries itserves. The European Region embracessome 870 million people living in an areastretching from Greenland in the north andthe Mediterranean in the south to the Pacificshores of the Russian Federation. TheEuropean programme of WHO therefore con-centrates both on the problems associatedwith industrial and post-industrial societyand on those faced by the emerging democ-racies of central and eastern Europe and theformer USSR.

To ensure the widest possible availability ofauthoritative information and guidance onhealth matters, WHO secures broad interna-tional distribution of its publications andencourages their translation and adaptation.By helping to promote and protect healthand prevent and control disease, WHO’sbooks contribute to achieving theOrganization’s principal objective – theattainment by all people of the highest possi-ble level of health.

WHO Centre for Urban HealthThis publication is an initiative of the Centrefor Urban Health, at the WHO Regional Officefor Europe. The technical focus of the workof the Centre is on developing tools andresource materials in the areas of health pol-icy, integrated planning for health and sus-tainable development, urban planning, gov-ernance and social support. The Centre isresponsible for the Healthy Cities and urbangovernance programme.

CONT

RIBU

TORS

Professor 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

5

FORE

WOR

D AN

D PR

EFAC

E Foreword

Palliative care is an important publichealth issue. It is concerned with the suf-fering, the dignity, the care needs andthe quality of life of people at the end oftheir lives. It is also concerned with thecare and support of their families andfriends. This is by and large a neglectedtopic in Europe, but is one that is rele-vant to everybody in the Region.

The purpose of this booklet is to providea concise overview of the best availableevidence on the concept of palliativecare and of related services. It is writtenmainly for decision-makers and healthprofessionals at all levels. Translatingscientific evidence into policy and actionis a complex process. We hope thebooklet will be used as a tool for spread-ing awareness and for stimulatingdebate and, above all, policy develop-ment and action.

The booklet is the result of a systematicand comprehensive effort to review sci-entific evidence and to make policy rec-ommendations, drawing on the expert-ise, suggestions and inputs of individualsfrom many academic centres and disci-plines. It expresses a European view-point, but may nevertheless reflectissues relevant to other parts of theworld. During the review it has becomeclear that the evidence available on pal-liative care is not complete, and thatthere are differences in what can beoffered across the European Region.Issues for further work have been high-lighted.

The booklet is linked to another publica-tion entitled Better palliative care forolder people. The two booklets are inde-pendent but interconnected. The formersets the scene of the multiple facets ofpalliative care and the latter considersthe care of older people in more detail.The job of policy-makers can be greatlyhelped by access to clear scientific facts,good arguments, guidance and lessonsthat are based on real experience andlegitimacy. I am convinced that both ofthese timely publications live up to thesequalities.

I should like to express my thanks to TheFloriani Foundation and to its ScientificDirector Dr Vittorio Ventafridda, withoutwhose financial support and tremendousenthusiasm this project would not havebeen realized. I should also like to thankthe Open Society Institute for its initialfinancial contribution to this project. Mydeep appreciation goes to all the expertswho contributed to the preparation of thebooklet, as well as to the EuropeanAssociation of Palliative Care for its tech-nical assistance. Finally, a special wordof thanks is due to Professor IreneHigginson and Dr Elizabeth Davies ofKing’s College London for the effectiveway they drove and coordinated thewhole preparation process and for theirexcellent editorial work.

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

6

7

Preface

Palliative care begins from the under-standing that every patient has his or herown story, relationships and culture, andis worthy of respect as a unique individ-ual. This respect includes giving the bestavailable medical care and making theadvances of recent decades fully avail-able, so that all have the best chance ofusing their time well.

Originating in small hospice teams, theproliferation of palliative care develop-ments worldwide illustrates the truth ofthe saying attributed to the noted anthro-pologist Margaret Mead: “Never doubtthat a small group of thoughtful, commit-ted citizens can change the world. Indeed,it’s the only thing that ever does”. Thetime has now come for the next stage – apublic health commitment drawing on thisextensive experience.

One powerful element of the work thatdeveloped into the whole spectrum of pal-liative care was a breakthrough in the atti-tude to pain, as it became recognized inall its complexity in the 1960s. It beganwith a concentration on cancer pain. Thisfocus made possible the early researchthat led to the booklet Cancer pain relief,published by WHO in 1986. Palliative carehas now, as originally envisaged, spreadto concern for the often complicated painsuffered by people with other life-threat-ening diseases.

The next stage is surely the introduction ofpalliative care into mainstream medicineand a determined programme of both pro-fessional and public education. This aim isto give not only relief but also the possi-bility of choice to each individual and fam-ily, a possibility often sadly lacking atpresent. The family, itself the main caringteam in the community, needs the adviceof a multidisciplinary group of profession-als if it is to reach its own potential forenabling patients to live as fully as possi-ble to the end of their lives. Sound mem-ories will then enable the bereaved toexperience a satisfaction that helps themlive on.

This requires both a social and a politicalimpetus, entailing changes in attitudesand widespread education of all profes-sionals involved with patients who have alife-threatening illness. It demands humancommitment rather than expensive drugsand interventions, and should be a con-cern for all governments.

This booklet presents these challengeswith exemplary clarity.

Dame Cicely Saunders

INTR

ODUC

TION

Overall life expectancy is increasing inEuropean and other developed coun-tries, with more and more people livingbeyond 65 years of age. As part of pop-ulation ageing, the pattern of diseasespeople suffer and die from is also chang-ing. The last century saw a dramaticreduction in deaths from infectious dis-eases in infancy and childhood.Increasingly, people die at older ages fol-lowing illnesses due to serious chronicconditions, which cause a wide range of

physical, psychological and social prob-lems. Health care systems must be able tomeet the needs of these people by reduc-ing suffering and supporting people of allages to live well and maintain their qualityof life for as long as possible.As people come closer to death theirsymptoms change rapidly, and theirneed to communicate with their families,friends and health professionals alsochanges. Coming to the end of life is anintensely personal event that can be

8

emotionally and physically demanding.Patients and their families often need par-ticularly responsive kinds of help duringthis phase, and health care must be tai-lored in a way that allows a rapidresponse as people’s needs increase.This includes ensuring good pain andsymptom control, comfort, sensitive com-munication, clear information and acoherent package of care. These meas-ures can help people live meaningfullyuntil the end of life and support their fam-ilies afterwards. We all die, and although this reality is asmuch a part of life as birth, thinkingabout it is not easy. Individually we mayplan the treatment we would wish tohave towards the end of life, or antici-pate the comfort we might find in cultur-al and religious beliefs, but most of thetime we choose to avoid thinking toomuch about it. Health care systems,however, do not have the option of pre-varication. Many people already needbetter care towards the end of life. Aswell as providing this, health care sys-tems must plan now for the care we willall need in the future. Traditionally, palliative care has centredon the needs of patients and their fami-lies at the end of life, but it has mostlybeen offered to cancer patients.Emerging needs of people living withserious chronic illnesses, together withnew evidence for the effectiveness ofpalliative care, mean it must now beoffered more widely and integrated morebroadly across the health care services.The relative neglect of palliative care inhealth policy presents urgent publichealth challenges for health policy- and

decision-makers. This booklet recom-mends key areas that they need to con-sider. It takes a public health approach,addressing information on epidemiology,trends, staffing issues, quality improve-ment methods and community respons-es that will help plan for care towards theend of life.Drawing mainly on evidence from Europeand North America, this booklet discuss-es ten different aspects of palliative care:1. why changes in populations make

care towards the end of life a publichealth issue;

2. the emerging needs for care;3. what palliative care is;4. the importance of individual rights,

preferences and options;5. the evidence for effective palliative

care;6. the need to ensure access to pallia-

tive care for vulnerable groups;7. how to develop programmes to

improve the quality of palliative care;8. how to improve education and train-

ing in palliative care for health pro-fessionals;

9. the need to increase public aware-ness of palliative care issues andoptions; and

10. the kinds of research and develop-ment on palliative care that will helppolicy-makers.

9

1CH

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NG P

OPUL

ATIO

NS

The evidence

Population ageingPopulations in European and otherdeveloped countries are ageing (Fig. 1).People are living longer and the propor-tion of those living beyond 65 years andinto very old age is increasing.

The changing pattern of diseaseIn line with the ageing of the population,the pattern of diseases that people sufferand die from is also changing.Increasingly, more people die as a resultof serious chronic disease, and olderpeople in particular are more likely tosuffer from multi-organ failure towardsthe end of life. The top five predictedcauses of death for 2020 are heart dis-

ease, cerebrovascular disease,chronic respiratory disease, res-piratory infections and lung can-cer (Table 1).It is not yet entirely clear whetherincreased longevity is inevitablyaccompanied by longer periodsof disability towards the end oflife. Some recent findings andpredictions suggest an optimisticpicture, with disability declining insuccessive cohorts of people asthey age. However, if more peo-ple live to older ages, and ifchronic diseases become morecommon with age, then the num-bers of people in a population liv-ing with their effects will increase.

Population ageing and the implications these presentfor care towards the end of life are major publichealth issues for the 21st century

10

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).

This means that therewill be more peopleneeding some form ofhelp towards the end oflife.

The changing socialstructureAt the same time, the

numbers of informal caregivers – particularly women, who have traditionally beenrelied on to care and support people towards the end of life – will be decreasing.Families have become smaller, more dispersed and varied, affected by increasedmigration, divorce and external pressures. Fewer women (and men) will be able tofind the time to provide support and care. Health care systems will therefore findthemselves challenged to provide effective and compassionate care for largernumbers of people at the end of life.This change in the structure of the population does not necessarily mean thatthe cost of care for people in the last years of their life will eventually over-whelm health service funding. In fact, international comparisons show no con-sistent relationship between the proportion of older people and a country’stotal health care costs. However, innovative ways of providing care can bedeveloped to meet needs. There are already examples of excellent practice,based on collaboration between enthusiastic health care professionals in dif-ferent countries. The key task for health planners and policy-makers is tobegin to use this information to plan effectively for the needs that we will allhave towards the end of our lives.

11

Andrews GR. Promotinghealth and function in an

ageing population. BritishMedical Journal, 2001,

322:728–729.

Manton KG et al. Chronicdisability trends in elderlyUnited States populations1982–1994. Proceedingsof the National Academy

of Sciences, 1997,94:2593–2598.

Rao JK, Anderson LA,Smith SM. End of Life is a

public health issue.American Journal of

Preventive Medicine,2002, 23:215–220.

Seven deadly myths.Uncovering the facts

about the high cost of thelast year of life.

Washington, DC, Alliancefor Aging Research

(www.agingresearch.org/brochures/7myths/7myths.html, accessed 28 July 2003).

Freedman VA et al. Recenttrends in disability and func-

tioning among older adultsin the United States. A

Systematic Review JAMA2002, 288(24):3137–3146.

KEYSOURCES

Policy implications

1. Policy-makers must begin to plan now to meet the needs of ageing popula-tions for care towards the end of life.

2. Health care systems must place much greater emphasis on the care of peo-ple of all ages who are living with and dying from a range of serious chronicdiseases.

References

1. World population ageing 1950–2050. New York, United Nations Population Division, 2002. 2. Murray CJL, Lopez AD. Alternative projections of mortality and disability by causes 1990–2020:

Global burden of disease study. Lancet, 1997, 349:1498–1504.

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 bronchial cancer 5 10

Source: Murray & Lopez (2).

Table 1 - Main predicted causes of death for 2020 and previous causes in 1990

2EM

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IFE

The evidence

The range of problems for different illnessesPeople living with serious chronic dis-eases face a wide range of problems andeach illness brings specific symptoms.Ischaemic heart disease may cause thechest pain of angina, or the breathless-ness and fatigue of heart failure. Strokedue to cerebrovascular disease maycause difficulty in moving or talking,while chronic obstructive pulmonary dis-ease may restrict activity because ofbreathlessness. Chronic diseases oftencome together and so add up to causemany problems affecting the quality ofpeople’s lives. HIV infection and AIDShave a relapsing and remitting course,and often produce multiple symptomsand problems that require alleviation.Although survival is much improved formany, it is still very poor in some coun-

tries and for some sections of society.Although there are some differencesbetween individual diseases, epidemio-logical studies show that many symp-toms and problems in the last year of lifeare similar (Fig. 2). The intensity of thesesymptoms may vary and this needs fur-ther study.

The concerns and needs of patients and familiesConcerns and the interpretation of termssuch as “quality of life” are highly indi-vidual. Some people are most concernedabout physical symptoms such as pain,and some by the effect the illness has ontheir everyday life. Others may be dis-tressed by the uncertainty of their situa-tion, by religious or spiritual concerns, orby the effect of their illness on their fam-ily. Patients’ views can be different fromthose of their health professionals, anddifferent in turn from those of the familymembers caring for them.Most research so far has concentratedon people living with cancer. Concernscommon to many include the need tocommunicate with their family membersand health professionals, and to copewith disability, pain, anxiety and depres-sion. Family members and caregiversoften report needing support in caring forthe ill person, and in coping with anxietyand depression. The latest research find-ings now show comparable concernsand possibly greater needs at somepoints in the illness for those experienc-ing non-cancer illnesses.

People living with different serious chronic illnessesoften have similar concerns and needs

12Fig. 2 - Prevalence of problems in the last year of life

Source: Higginson (1).

Needs caused by the uncertainty of the prognosis Although the course of an illness due to cancer can often be predicted, there isuncertainty for many other common chronic diseases (Fig. 3).People with heart failure or chronic obstructive respiratory disease, for example,may live with more disability for longer, but die suddenly with little warning aftera rapid deterioration. People with dementia may live for a long time but becomeincreasingly dependent yet unaware of those close to them, which can be par-ticularly distressing for their families. This is considered in more detail in theaccompanying booklet, Better palliative care for older people.The trajectories of common serious illnesses other than cancer can give theimpression that they will be more difficult to plan services around. However,

uncertainty of prognosis does not mean that theneeds of these patients and their families are anyless important.

13

Addington-Hall JM et al.Symptom control and

communication withhealth professionals and

hospital care of strokepatients in the last year oflife as reported by surviv-

ing family, friends and offi-cials. Stroke, 1995,

26:2242–2248.

Edmonds P et al. A com-parison of the palliativecare needs of patients

dying from chronic respi-ratory diseases and lung

cancer. PalliativeMedicine, 2001,

15:287–295.

Gibbs JS. Heart disease.In: Addington-Hall JM,

Higginson IJ, eds.Palliative care for non-

cancer patients. Oxford,Oxford University Press,

2001.

Hanrahan P, Lutchins DJ,Murphy K. Palliative care

for patients with dementia.In: Addington-Hall JM,

Higginson IJ, eds.Palliative care for non-

cancer patients. Oxford,Oxford University Press,

2001.

Rees J, O’Boyle C,MacDonagh R. Quality oflife: impact of chronic ill-

ness on the partner.Journal of the Royal

Society of Medicine, 2001,94:563–566.

KEYSOURCES

Policy implications

1. Policy-makers must invest in providing publiclyfunded palliative care services as a core part ofhealth care and not as an “add-on extra”.

2. Policy-makers must take steps at a populationlevel to ensure that unmet needs for care areidentified for all common serious diseases,including cancer, ischaemic heart disease, cere-brovascular disease, chronic obstructive respi-ratory disease, end-stage liver and kidney dis-ease, infectious diseases and dementia.

3. Policies need to identify people living with seri-ous chronic illnesses in widely different settingssuch as the community, nursing homes andhospitals, including intensive care.

4. Policies must also recognize the work of familiesand caregivers and support them to help carefor the patient and to cope with the sense ofloss that the illness brings. This might includeassistance similar to that often granted to thosewith maternity and paternity responsibilities.

References

1. Higginson I. Epidemiologically based needs assessment for palliative and terminal care. Abingdon,Radcliffe Medical Press, 1997.

2. Lynn J, Adamson DM. Living well at the end of life: adapting health care to serious chronic illness in oldage. Arlington, VA, Rand Health, 2003, used with permission.

Fig. 3 - Models of the illness trajectory forcommon serious chronic diseases

Source: Lynn & Adamson (2).

14

3PA

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E

What is palliative care?

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

... an approach that improves the qualityof life of patients and their families facingthe problem associated with life-threaten-ing illness, through the prevention andrelief of suffering by means of early identi-fication and impeccable assessment andtreatment of pain and other problems,physical, psychosocial and spiritual.

Palliative care provides relief from painand other distressing symptoms, affirmslife and regards dying as a normalprocess, and intends neither to hastennor to prolong death. Palliative care inte-grates the psychological and spiritualaspects of patient care, and offers a sup-port system to help patients live asactively as possible until death. It alsooffers a support system to help the fam-ily cope during the patient’s illness and intheir own bereavement. Using a teamapproach, palliative care addresses theneeds of patients and their families,including bereavement counselling ifnecessary. It enhances quality of life, andmay positively influence the course of

the illness. It is applicable early in thecourse of the illness with other therapiesthat are intended to prolong life, such aschemotherapy or radiation therapy, andincludes those investigations needed tobetter understand and manage distress-ing clinical complications.Palliative care should be offered as needsdevelop and before they become unman-ageable. Palliative care must not be some-thing that only specialized palliative careteams, palliative care services or hospicesoffer when other treatment has been with-drawn. It should be an integral part of careand take place in any setting.

But isn’t this just good health care?

All areas of health care that provide holis-tic care for people with chronic illnesshave for many years recognized the widerneeds of patients and their families. This isespecially true for general practice, geri-atric medicine, paediatrics, psychiatry andrehabilitation. Palliative care has focusedon controlling pain and other symptoms,defining needs around patients and theirfamilies, and being flexible about doingwhat is necessary to help people adaptand cope with their situation.

What new needs to be done?

As ageing populations develop newneeds, health care systems need to beequally flexible in their response, and per-ceptions about care towards the end oflife need to change. Traditionally palliativecare has been offered most often to

Policies for palliative care need to be developed aspart of an innovative global public health policy

The importance of recognizing “total pain” and wider needsoutside of the cancer field

Patients attempting to describe pain use such phrases as “itseems as if all of me was wrong” and speak not only of [painand] other symptoms, but also include descriptions of theirmental distress and their social and spiritual problems.

The lessons learnt so far in the now world-wide field of palliativecare were never meant to be confined to one group of patientsand their families. Carers struggling to cope over long periodsof stress are equally deserving of support and their voices aretoo often unheard.Dame Cicely Saunders, Founder of the modern hospice movement, 1964 and 2001.

people suffering from cancer, partlybecause the course of this illness hasbeen more predictable making it easi-er to recognize and plan for the needsof patients and their families.One consequence of this has been the

perception that palliative care is rele-vant only to the last few weeks of life –when no other treatments are benefi-cial – and can be delivered only byspecialized services (Fig. 4). In fact,people and their families experiencemany problems throughout the manyyears of an illness and need help at thetime and not at an easily definablepoint just before death. The concept ofoffering palliative care only at the endof life clearly not does fit many com-mon situations, whereby people needpalliative care after diagnosis and con-tinue to benefit from treatments thatalter the progress of disease until theend of life. New concepts of palliativecare try to match the service moreclosely to what is understood aboutthe course of the illness (Fig. 5).The concept of palliative care as anintervention that can be offeredalongside potentially curative treat-ment must be developed and used tomeet the needs of ageing popula-tions, as well as those of youngerpeople and children who experiencelife-threatening illness.

15

Saunders C. Foreword. In:Addington-Hall JM,

Higginson IJ, eds.Palliative care for non-

cancer patients. Oxford,Oxford University Press,

2001.

Sepulveda C et al.Palliative care: the World

Health Organization’sglobal perspective.Journal of Pain and

Symptom Management,2002, 24:91–96.

Singer PA, Bowman KW.Quality end-of-life care: aglobal perspective. BMCPalliative Care, 2002,1:4.

Fox R. From rectangles totriangles. Journal of the

Royal Society of Medicine,2001, 94:427.

KEYSOURCES

Fig. 4 - Traditional concept of palliative care

Source: Adapted from Lynn & Adamson (2).

Fig. 5 - New concept of palliative care

Source: Adapted from Lynn & Adamson (2).

Policy implications

1. These concepts of palliative care must be developed and used to meet theneeds of ageing populations as well as those of younger people and childrenwho suffer life-threatening illness.

2. Services for palliative care must be offered more widely, and broadly inte-grated across all health services.

3. Services should be available on the basis of need in terms of symptoms andproblems, and their effectiveness in meeting that need, rather than on thebasis of diagnosis.

References

1. National cancer control programmes: policies and managerial guidelines, 2nd ed. Geneva, WorldHealth Organization, 2002.

2. Lynn J, Adamson DM. Living well at the end of life: adapting health care to serious chronic illness inold age. Arlington, VA, Rand Health, 2003.

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Ethical arguments

All people have a right to receive high-quality care during serious illness and toa dignified death free of overwhelmingpain and in line with their spiritual andreligious needs. Although palliative careoriginally developed for people with can-cer, ethical concerns about fairness,equality and equity require that this stan-dard of care be offered to other peoplewith similar needs. There are also impor-tant ethical concerns about how careshould be offered and the choices peo-ple may wish to make about this.People who are very sick or are copingwith serious chronic illness have theirown experiences and values. People

vary greatly in their willingness and abili-ty to talk openly about their illness or itsprognosis, the needs they wish toacknowledge, the level of symptom con-trol they find acceptable, the interven-tions they will consider, and whom theywish to care for them. Taking account ofthese values is one important way inwhich health professionals can help indi-viduals and their families feel they are incontrol. Enabling people to becomeinvolved in decision-making requiressensitivity to personal and cultural val-ues, empathy and an ability to informand empower people to make choicesabout their care when they wish.

The evidence

There is increasing research evidence con-cerning the decisions that people wouldprefer to make about care at the end oftheir life. Most studies have found thataround 75% of respondents would preferto die at home. Those recently bereaved ofa relative or friend are slightly more likely toprefer inpatient hospice care. A range ofstudies have found that between 50% and70% of people receiving care for a seriousillness also say they would prefer homecare at the end of life (although as theyapproach death, part of this group maycome to prefer inpatient care).

Good quality care towards the end of life must be recognized as a basic human right

16

Everyone has the right to … security 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

Despite the preference ofmany people to be caredfor and to die at home, inpractice death in hospitalremains common in manycountries (Fig. 6). Detailedwork in the United States,for example, has foundvariation in the proportionof people dying at homeranging from 18% to 32%.The Netherlands hasreported some success inproviding a range of pallia-tive care services in differ-ent settings and in allow-

ing people to die at home if they so wish. In many countries the number of deathsoccurring in nursing homes is also increasing.

17

Field MJ, Cassel CK, eds.Approaching death.

Improving care at the endof life. Committee on care

at the end of life.Washington, DC, National

Academy Press, 1997.

Higginson I, Sen-GuptaGJA. Place of care in

advanced cancer: A quali-tative systematic literature

review of patient prefer-ences. Journal of Palliative

Medicine, 2000,3:287–300.

Facts on dying 2002 –Brown atlas of dying.

Providence, RI, BrownUniversity, 2002

http://www.chcr.brown.edu/dying/brownatlas.htm,accessed 23 July 2003).

Wasson K, George R.Specialist palliative carefor non-cancer patients:

the ethical arguments. In:Addington-Hall JM,

Higginson IJ, eds.Palliative care for non-

cancer patients. Oxford,Oxford University Press,

2001.

KEYSOURCES

Policy implications

Some countries are now developing national and regional palliative care strate-gies, and each country needs to decide which options for care are priorities andcan be offered or planned for. However, if people do not receive information onwhat care is available, it is difficult to argue that the best care has been offered.Currently, most health care systems are not set up in a way that makes it easyfor people to receive palliative care or to die where they would wish. In manycountries data on place of death are not collected nationally.1. Public health policy must acknowledge people’s right to high-quality palliative

care and to make decisions about it, whatever the nature of the disease theysuffer from. These rights should be enshrined in health and social care legis-lation.

2. Policy-makers should monitor the wishes of seriously ill people concerningplace of care and death.

3. Policy-makers should routinely monitor place of death as one interim meas-ure of success of the system of palliative care provided.

4. Policy-makers should encourage the health services to inquire of people theirpreference for place of care and death. Meeting individual preferences shouldbe the ultimate measure of success.

References

1. Weizen SMS et al. Factors associated with site of death: a national study of where people die.Medical Care, 2003, 41:323–335.

Fig. 6 - Preliminary data on place of death by country

Sources: United States: Weizen SMS et al. (1); England and Wales: Office of NationalStatistics 2000; Switzerland: extrapolations from Federal Statistics 1985; France:INSERM 1999. Netherlands: Central Office of Statistics in the Netherlands, 2000, MRibbe, personal communication. Germany: Thomas Schindler, personal communica-tion. Ireland: Julie Ling, personal communication.Note: Data from different countries are collected in different ways and sometimesnot at all. This has limited the comparison that can be drawn, but highlights theneed for health care systems across Europe to begin to collect this informationroutinely. Some 15% of deaths in the Netherlands also occur in residential homesfor the elderly, and these are not included in the graph above.

5EF

FECT

IVE

PALL

IATI

VE C

ARE

The evidence

Pain and symptom controlPalliative care has developed expertisein pain and symptom control over manyyears. Most of the pain experienced bypeople with advanced cancer can becontrolled if appropriate clinical guide-lines are followed and effective drugs,including opioids, are available. Palliativecare has promoted wider application ofthe principles of pain and symptom con-trol. However, more work is needed totrain all professionals in assessing, mon-itoring and treating pain and distressingsymptoms in all settings.

Communication skillsEffective communication between doctorsand patients is associated with a range ofhealth outcomes including, most com-monly, improvements in psychologicalhealth, symptoms and function and better

control of pain, bloodpressure and blood glu-cose level. The ability ofhealth professionals tocommunicate effectivelywith families and involvethem in decision-makingconsistently emerges asan important contributorto their satisfaction withcare at the end of life. Thecommunication skills ofhealth professionals canbe improved by usingfeedback from video-taped consultations and

discussion, but they still need further helpto sustain these new skills in everydaypractice.

Giving informationRecordings or summaries of key consul-tations are of benefit to most cancerpatients. They lead to improved knowl-edge and recall of information withoutcausing psychological problems as wellas greater satisfaction. Nevertheless,these must be used sensitively withpatients whose prognosis is poor, andaccount must be taken of whether or notthey wish to know the full facts.

Support for family and caregiversCarers generally report satisfaction withhome care and, if they are willing to leavethe patient, value respite and sittingservices. The few who take up groupactivities or support groups value thechance to talk openly with others.

Coordinated servicesThe organization and delivery of palliativecare services varies in different countries,depending on historical norms andnational policies and patterns of funding.In many countries, health professionals inprimary care and hospitals carry outmuch palliative care. Some countrieshave focused on developing inpatientpalliative and hospice services. In others,there has been a greater emphasis onhome care, on sharing care with otherteams or on hospital support. In someinstances, hospices or palliative servicestake complete responsibility for care.

Simple measures, including pain relief, sensitivecommunication and well coordinated care, are effec-tive in relieving symptoms and suffering

18

However, almost every studyuncovers the importance thatpatients and families place onreceiving a well organized packageof care. Trials on different ways ofcoordinating services, often throughpalliative care services, across thedifferent settings of hospital, homeand community are now finding thata higher proportion of people canbe helped to remain and die athome if they wish. There is also evi-dence that this coordinated pallia-tive support can improve the qualityof life of family and carers.

Specialist palliative care servicesAs palliative care has developed, a common model of providing care has been toconcentrate expertise in multiprofessional teams who work within hospitals, inpa-tient units, hospitals or the community. The role of these teams is to assess thepatients’ symptoms and problems and devise ways of improving these and ofproviding more general support for patients and their families. These teams there-fore usually deal with a selected group of patients, who have the most complexneeds for symptom control, communication and coordination of care, referred tothem by other teams of professionals. Despite this, the evidence on the effective-ness of specialist palliative care teams consistently adds up to benefits forpatients and families, as measured by the control of pain and other symptomsand the satisfaction expressed by patients and their families (Fig. 7). These teamsmay also encourage improvements in symptom management and communica-tion among local nonspecialist services through education and liaison.

19

Baker R et al. Family sat-isfaction with end-of-life

care in seriously ill hospi-talised adults. Journal ofthe American Geriatrics

Society, 2000, 48(5,Suppl.):61–69.

Gysels M, Higginson IJ,eds. Improving supportive

and palliative care foradults with cancer.

Research Evidence.Manual. London, National

Institute for ClinicalExcellence, 2002

(www.nice.org.uk,accessed 23 July 2003).

Higginson IJ et al. Do hos-pital-based palliative

teams improve care forpatients or families at the

end of life? Journal ofPain and Symptom

Management, 2002,23:96–106.

Jordhoy MS et al. A pallia-tive-care intervention anddeath at home: a clusterrandomised trial. Lancet,

2000, 356:888–893

KEYSOURCES

Policy implications

1. Policy-makers need to promote the development of palliative care skills instaff working across all settings, especially in pain and symptom control andcommunication.

2. Palliative care services must be coordinated across different settings ofhome, hospital, inpatient hospice, nursing home and other institutions.

3. Policy-makers need to invest in the funding of the full range of effective pal-liative care services, including specialist teams to ensure that patients andtheir families have access to the services they need.

References

1. Higginson IJ et al. Is there evidence that palliative care teams alter end-of-life experiences of patientsand caregivers? Journal of Pain and Symptom Management, 2003, 25:150–168.

Fig. 7 - Cumulative effect size of palliative care teams, bycountry of study

Source: Higginson et al. (1).

6VU

LNER

ABLE

GRO

UPS

The evidence

Despite progress in developing palliativecare, in several countries there is evi-dence that some groups in society areexcluded from the best of these services,or have special needs that are not wellmet. These can include the less affluent,members of some ethnic minoritygroups, older people and children.The reasons for variations in access areunclear. They may reflect untestedassumptions about the desire and abilityof different groups to cope without thespecial form of help available, discrimi-nation, lack of skills in detecting con-cerns, or more general problems with theway that health care is structured.

Socioeconomic statusPeople living in less affluent areas havehigher death rates from some cancers,but are more likely to die in hospital andless likely to die at home. These findings,first reported in the United Kingdom andreplicated now in Italy, suggest that itmay be more difficult to provide homecare services in deprived areas. Othergroups that are hard to reach includehomeless people, prisoners, travellers,long-term psychiatric patients and thosewith learning disabilities.

Cultural and ethnic groupsPeople of all backgrounds and beliefsmay experience spiritual pain and exis-tential crises towards the end of life.

Health care staffneed to be able torecognize suchcrises and beaware of how toseek help fromrepresentatives ofthe range of faithsand beliefs in soci-ety. In the UnitedKingdom, peoplefrom some culturaland ethnic groupsare less commonlycared for in inpa-tient hospices.There is evidencethat their needs for

Some vulnerable groups within society have unmetneeds and equal access to good quality palliative caremust be ensured

20

pain control are not fully met and that health professionals need to be more awareof the cultural diversity within societies today. The level of autonomy desired, thewish to know the truth, and the way in which death is viewed and the rituals thataccompany it vary widely between and within cultural groups.

Older peopleOlder people do not have access to hospice and palliative care services in theproportions that might be expected. There is considerable evidence of under-assessment and undertreatment of symptoms such as pain in hospitals andnursing homes, which are the setting for much care that is provided to olderpeople in the last years and months of life.

Children and adolescentsChildren and adolescents are a special group, as their death has a devastatingand enduring impact on families. The palliative care team will play a central role,seeking to prevent unnecessary suffering, communicate sensitively and avoidfuture regret for parents over the choice of treatment, which can in itself causesuffering. Care often needs to be provided in a range of settings, including thehome and inpatient and respite care.

21

Costantini M et al.Geographical variations of

place of death amongItalian communities sug-

gest an inappropriate hos-pital use in the terminal

phase of cancer disease.Public Health, 2000,

114:15–20.

Field MJ, Behrman RE,eds. When children die:improving palliative andend of life care for chil-dren and their families.

Washington, DC, Instituteof Medicine, 2002

(http://www.iom.edu/report.asp?id=4483, accessed

28 July 2003).

Firth S. Wider horizons.Care of the dying in a mul-ticultural society. London,

National Council forHospice and Specialist

Palliative Care Services,2001.

Higginson IJ et al. Dosocial factors affect where

patients die? An analysisof 10 years of cancer

death in England. Journalof Public Health Medicine,

1999, 21(1):22–28.

Higginson IJ, ThompsonM. Children and young

people who die from can-cer: epidemiology and

place of death in England(1995-9). British Medical

KEYSOURCES

Policy implications

As for all other areas of health care, there is a constant need to ensure thataccess is equitable for all members of society. Ensuring equitable access to pal-liative care is at least as important as access to any other kind of health care.This is an underresearched area, where there are many gaps in our knowledge,and where multinational comparison might be valuable.

1. Health policy-makers need to ensure that national systems are in place tomonitor access to palliative care for all groups in society.

2. Health care organizations need to invest in local systems for identifying vul-nerable groups, and for monitoring and improving the quality of services pro-vided to these populations.

3. Policy-makers need to promote the dissemination of good practice in reach-ing vulnerable groups.

Journal, 2003; 327:478–479.

7IM

PROV

ING

SERV

ICES

The evidence

Knowledge is not enough It is increasingly clear that new knowl-edge about effective care rarely leads towidespread improvement without adeliberate effort being made to changepractice. Many countries are thereforeattempting to develop more systematicways of using knowledge to improvetheir health services. These methodsinclude developing clinical guidelinesand audit, developing care pathways,involving users of services in designingchange and seeking their feedback moreregularly, and devising methods that

encourage teams of professionals towork together to improve the quality ofthe services provided. Changing organization, practice andbehaviour, however, is not easy or simple.In the cancer field, for example, develop-ing evidence-based clinical guidelines forhealth professionals has met with mixedsuccess. Reviews of these initiatives sug-gest that guidelines need to be locallydeveloped and championed, and support-ed by education, feedback, multiprofes-sional collaboration and effective projectmanagement. Some specific audit toolshave also been developed for palliative

care to measure important out-comes, and have been usedsuccessfully in different set-tings.

Promoting innovative approaches Actively involving people whoare receiving palliative care inthe design of services can bemore difficult than in otherareas of health care, becauseof the need to avoid overbur-dening severely ill patients. Itis not impossible, however,and some projects are devel-oping flexible models in thisarea. Other approachesinclude regular surveys of

Many innovative ways of improving the quality of caretowards the end of life are being developed and mustbe shared across teams, organizations and countries There is already much that we know, particularly in the area of symptom man-agement, that would improve care if we applied it more effectively in practice

22

patients receiving care, or surveysof bereaved relatives for theirviews on the quality of care thepatient received. These results canbe fed into local needs assess-ments and thus influence the plan-ning of services. One method cur-rently attracting interest is continu-ous quality improvement. This canbe implemented in one service orcan be organized so that manyteams meet within a “collabora-

tive”. Either way, the teams providing care learn how well their local system is work-ing, measure what happens within it, and attempt to change it in a repeated cycleof planning, implementation, insight and planning again (Fig. 8). Exciting reports areemerging of success in applying this technique locally. Local palliative care net-works might be useful in sharing good practice among health care organizations.

23

Down K et al. Buildinguser participation to

reshape services for peo-ple affected by motor neu-

rone disease. Journal ofInterprofessional Care,

2002, 16:289–290.

Ellershaw JE et al.Development of a multi-

professional care pathwayfor the dying patient.European Journal of

Palliative Care, 1997,4:203–208.

Foley KM, Gelband H,eds. Improving palliative

care for cancer.Washington, DC, National

Academies Press, 2001.

Lynn J, Schuster JL,Kabcenell A. Improving

care for the end of life: asourcebook for health care

managers and clinicians.New York, NY, Oxford

University Press, 2000.

Higginson IJ. Clinical andorganizational audit in pal-liative medicine. In: Doyle

D, Hanks G, Cherny N,Calman K, Eds. TheOxford Textbook of

Palliative Medicine 3rdEdition. Oxford: OxfordUniversity Press, 2004.

KEYSOURCES

Policy implications

It is unlikely that any one of these new methods for improving quality will work wellacross all situations or be sustained without effective leadership, staff involvementand funding (2). Change of this kind does not occur rapidly and it may take sev-eral years for knowledge to be assimilated, new skills and practice to be learntand accepted, and supporting structures and networks to evolve. Investment inimproving services therefore needs to take a long-term view. 1. Policy-and decision-makers should reward health care organizations that

engage in audit and quality improvement schemes in palliative care.2. Policy-makers should encourage the dissemination of examples of good prac-

tice and constantly review the success of these methods in palliative care.3. Health care organizations need to develop and maintain cultures that support

health professionals to work well in teams and to identify areas of palliativecare that might be developed or improved.

4. Demonstrations of innovative approaches and evaluation of their merit in pal-liative care need to be widespread and encouraged.

References

1. I. Langley J. Nolan K Nolan T. Norman C. Provost L. The improvement guide. San Francisco: Jossey-Bass, 1996.

2. Higginson IJ, Hearn J, Webb D. Audit in palliative care: does practice change? European Journal ofCancer Care, 1996, 5:233–236.

Fig. 8 - A model for improvement

Source: Langleg et al. (1).

8ED

UCAT

ING

PROF

ESSI

ONAL

S

The evidence

Traditional educationAlthough this is slowly changing, pallia-tive care has traditionally not had a highprofile within the general education andtraining of health professionals. Manymedical and nursing textbooks oftenhave virtually no information on caretowards the end of life, apart from onprognosis (Fig. 9). This may explain whyhealth professionals often report thatthey do not feel well trained in the areasof breaking bad news, assessing prog-nosis, controlling symptoms or helpingpatients with difficult decisions. It mayalso partly explain why people are oftenreferred too late or not at all for palliativecare. Nevertheless, there is encouragingevidence that many of these skills can be

acquired during undergraduate andpostgraduate training and later.

Learning in everyday practiceStudies of medical students find that thosegiven the opportunity to follow people withcancer for longer periods of time, or tolearn from them in communication skillstraining, are more knowledgeable and will-ing to listen, discuss difficult topics andhelp people make decisions. There is alsoevidence that fully qualified nurses anddoctors can acquire further skills in com-munication by attending intensive courseslater in their training and careers. However,it is not always easy for these professionalsto sustain new skills given the reality ofeveryday practice. This may mean thatprofessionals need more training with con-structive feedback over longer periods oftime, or that health care organizations needto do more to develop cultures and work-ing practices in which such skills can beused (Fig. 10). This includes making extratime available to deliver high-quality careand ensuring that facilities are suitable.Even the most highly trained professionalsfind it difficult to work at their best whenthey feel hard-pressed, hurried, unvaluedand vulnerable to criticism.Ethical issues in the care of patients areincreasingly complex, particularly in pro-gressive and serious illness. Training anddebate on ethical aspects on a range ofissues are thus essential. These include

Health professionals need to be trained well in pallia-tive care, to have opportunities to extend their knowl-edge, and to work within organizations that promoteattitudes and behaviours to sustain these skills

24

Fig. 9 - Information on end-of-life care for four major causes of deathcontained in four American medical textbooks

Source: Adapted from Carron, Lynn & Keaney (1).

Aspect

Prognosis

Symptons

Mode of death

Decision making

Effect on family

confidentiality, discussing theprognosis and the benefits andburdens of treatment, workingwith complex patient and familydynamics, advanced directives,resource allocation, assessingand talking with patients and fam-ilies who request assisted suicideor euthanasia, withholding andwithdrawing treatment, and mak-ing decisions on behalf of patientswho are unable to communicate.

Training all professionalsIt is unrealistic to expect the wider emerging needs for palliative care to be metby expanding the workforce of specialists in palliative care. It is more likely thata solution will be found by expanding the knowledge and skills of health pro-fessionals generally. There is good evidence that the knowledge and attitudesof primary care professionals about palliative care can be improved, but therewill need to be two-way education between specialists and generalists. If peo-ple with illnesses other than cancer are to have better access to specialist care,specialists themselves will need to learn more about symptoms other thanthose caused by cancer.

25

Christakis NA. Death fore-told: prophecy and prog-

nosis in medical care.Chicago, IL, University of

Chicago Press, 1999.

Ellershaw J, Ward C. Careof the dying patient: the

last hours or days of life.British Medical Journal,

2003, 326:30–34.

Finlay IG, Maughan TS,Webster DJ. A ran-

domised controlled studyof portfolio learning inundergraduate cancer

education. MedicalEducation, 1998,

32:172–176.

Gysels M, Higginson IJ,eds. Improving supportive

and palliative care foradults with cancer.

Research Evidence.Manual. London, National

Institute for ClinicalExcellence, 2002

(www.nice.org.uk,accessed 23 July 2003).

Hanratty B et al. Doctors’perceptions of palliative

care for heart failure:focus group study. British

Medical Journal, 2002,325:581–585.

Symptom relief in terminalillness. Geneva, World

Health Organization, 1998.

KEYSOURCES

Policy implications

1. Policy- and decision-makers should ensure that palliative care is a core partof the training and continuing professional education of doctors, nurses,social workers, chaplains and other health professionals.

2. Sufficient palliative care specialists should be trained and supported to pro-vide this education.

3. Health care organizations need to invest in supporting health professionals inkeeping up to date with palliative care, especially in pain and symptom man-agement, in developing and maintaining their assessment and communica-tion skills, and in using all available resources.

4. Health care organizations need to develop cultures and working practicesthat allow the best use of the palliative care skills of health professionals,including spending sufficient time with patients and families.

References

1. Carron AT, Lynn J, Keaney P. End-of-life care in medical textbooks. Annals of Internal Medicine,1999, 130:82–86.

2. Barclay S et al. Caring for the dying: how well prepared are general practitioners? A questionnairestudy in Wales. Palliative Medicine, 2003, 17:27–39.

Fig. 10 - Percentages of doctors at different career stagereceiving training in aspects of palliative care

Source: Barclay et al. (2).

Public discussion of death

It is increasingly said that with advancesin public health, living conditions and lifeexpectancy, people in developed coun-tries have lost the familiarity that previ-ous generations had with death anddying. The loss of strong religious andspiritual beliefs may also have takenaway a language and framework withinwhich people can talk easily aboutdeath. Indeed, death may be so far fromdaily experience that its possibility maybe denied or come as a surprise.Medicine is also charged with promotingthe view that death is a failure, ratherthan something normal that may be put

off but that will happen eventually. Onthe other hand, much of the daily newsand popular art and music present uswith images of the death of other people– often sudden, untimely and the fault ofsomeone else. Sometimes, however, themedia presents people who lived wellwith serious illness until death, andinspired or contributed to the community.

Personal experience

Most adults have experienced the deathof at least one relative or friend. The pub-lic support given to the hospice move-ment both in terms of finance and thetime and skills of volunteers is testimony

to the importance peopleplace on this care. Forexample, a recent initiativein Croatia recruited volun-teers who eventuallybecame involved in weeklyhome care visits topatients. Now there are 10000 visits each year.Indeed, people who aredying are among the mostvulnerable, and the qualityof care they receive mustbe one mark of society’shumanity as a whole.Innovative public healthprogrammes have a role ineducating the public aboutend-of-life issues and pal-

9ED

UCAT

ING

THE

PUBL

ICThe dissatisfied dead cannot noise abroad the negli-gence they have experienced Hinton, 1967

26

liative care. This can begin in schools. Forexample, the National Council for Hospiceand Specialist Palliative Care (UK) hasproduced guidance for teachers lookingafter children who have recently beenbereaved.Programmes can present more positiveimages of what good care can achieve.They can increase awareness of differentcare options for people needing tosecure care for older relatives, and leadto more public scrutiny and pressure toimplement policies to meet their needs.An increase in awareness about what isknown and what is uncertainabout causes of death, andwhat can be offered, mayallow people to considermore realistically the choicesthey will want to make forthemselves in the future.

27

Center to AdvancePalliative Care

(www.capc.org, accessed28 July 2003).

Facts on dying 2002 –Brown atlas of dying.

Providence, RI, BrownUniversity, 2002

http://www.chcr.brown.edu/dying/brownatlas.htm,

accessed 23 July 2003).

KEYSOURCES

Policy implications

The success and growth of the hospice and palliative care movement is testi-mony to the importance the public gives to high-quality care towards the end oflife. Already, there are effective examples of public education programmes thathave explored this issue, using popular culture, the media, music, art and liter-ature. Often, bringing the stories of people and their families or caregivers outinto the open is a powerful way of stimulating debate and action.

1. Public health policies must include a component of public education toincrease awareness of palliative care issues.

2. This should go beyond traditional adult education courses to reach peoplefrom a wide range of communities, using a variety of media.

Improving care for thedying (www.growth-

house.org, accessed 28July 2003).

International Associationfor Hospice and Palliative

Care(www.hospicecare.com,accessed 28 July 2003).

Last Acts. A nationalcoalition to improve care

and caring near the end oflife (www.lastacts.org,

accessed 28 July 2003).

Lynn J, Harrold J.Handbook for mortals:

guidance for people facingserious illness. New York,

NY, Oxford UniversityPress, 1999

(http://www.abcd-caring.org/educate/index.

html, accessed 28 July2003).

Macmillan Cancer Relief(www.macmillan.org.uk,accessed 28 July 2003).

Project on Death inAmerica (Open Society

Institute)(www.soros.org/death.html, accessed 28 July 2003).

The art of dying. Changingattitudes to a good death

from antiquity to the pres-ent day. London, King’s

College London,(www.kcl.ac.uk/depsta/

humanities/art_of_dying,accessed 28 July 2003).

10RE

SEAR

CH

AND

DEVE

LOPM

ENT Gaps in research on effective care

This booklet has shown how evidencefor needs towards the end of life and forthe effectiveness of palliative care hasaccumulated over the last 40 years. Italso shows where there are still gaps inour knowledge. Research is urgentlyneeded into the etiology and treatmentof non-cancer pain and symptoms, bar-riers to accessing care, and the care ofpatients with diseases other than cancer.Areas needing more in-depth studyinclude the care of older people andthose from different cultural groups, thesocial, psychological and spiritualaspects of palliative care, and the devel-opment of assessment tools. A continu-ing challenge for researchers is how tostudy and determine needs in a sensitiveway, and to synthesize patients’ and rel-atives’ views with other evidence to findeffective solutions.

Better use also needs to be made ofexisting data on palliative care, and indeveloping measures to routinely moni-tor emerging needs and the quality ofcare. Useful areas for comparisoninclude variation in models and costs ofcare and spending on palliative careservices, and intercountry research. Animportant question is how indicatorsmay be meaningfully used to comparecare. These might include morphine use,the proportion of non-cancer patientscared for, the proportion of patients whodie in pain, and palliative support forpatients in nursing homes.

Gaps in research on getting evidenceinto practice

Once research has established evidenceof needs and of effective interventions,considerable work remains to be done intranslating this work into everyday prac-

Research and training in palliative care should beconsidered a priority, and funded in line with that forpotentially curative interventions

28

• The United Kingdom spends only 0.18% of its total govern-

ment and charitable funding for cancer research on end-of-life

and palliative care.

• The United States spends only 0.9% of its cancer research

budget on palliative care.

29

Addington-Hall J.Research sensitivities topalliative care patients.

European Journal ofCancer Care, 2002,

11:220–224.

National CancerResearch Institute

Supportive & PalliativeCare Strategic Planning

Group. Strategic analysis2002 (www.ncri.org.uk,

accessed 28 July 2003).

Foley KM, Gelband H,eds. Improving palliative

care for cancer.Washington, DC, National

Academies Press, 2001.

KEYSOURCES

Implications for policy-makers and research funders

Despite the importance of palliative care for everybody, it does not attract a veryhigh proportion of research funding. Several countries have recently reviewedtheir national research strategies for cancer research, and have found that lessthan 0.5% of funding is used on research into palliative care. Set against thefact that more than half of those diagnosed with cancer will eventually die fromtheir disease, this is a staggeringly small figure.

1. Policy-makers need to develop national strategies for palliative care research,and to expand investment in this area across all diseases.

2. Policy-makers should invest in developing national data sets for palliativecare.

3. Those funding research should monitor the proportion of funds in any diseasearea directed towards palliative care, and invest in research to redress imbal-ances.

4. Those funding research need to encourage innovative research (ideas that aremost likely to make a difference in practice) to help people with seriouschronic illnesses to live well and die well.

tice within the health services. There is aneed for developmental funding of ini-tiatives to educate professionals at dif-ferent stages of their careers, to improvetheir skills in assessing needs andchanging practice. Methods to coordi-nate palliative care between profession-als working in different settings need tobe tested in demonstration projects.

30

Australia Professor Ian Maddocks and Deborah 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 Kakas Cyprus Association of CancerPatients and Friends, Nicosia

Dr Sophia PantekhiCAS Arodaphnousa, Nicosia

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

Dr Aude Le DevinahMinistry of Health, Paris

Paulette LeLannIRFAC, Rouen

Dr Christophe TrivalleHôpital Paul Brousse, Villejuif

GermanyProfessor Eberhard Klaschik Centre 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 Ricerca sulCancro, 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

We are grateful to the following experts who were invited to comment on this booklet, many of whom gave us useful comments, graphs, information and reports

NetherlandsDr Luc DeliensVU University Medical Centre,AmsterdamDr Ger PalmboomNPTN, Bunnik

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

Professor David ClarkUniversity of Sheffield

Dr Deirdre CunninghamSouth East London StrategicHealth Authority

Baroness Ilora FinlayUniversity Medical School of Wales

Katherine A FroggattUniversity of Southampton

Professor Sîan GriffithsPresident, Faculty of Public HealthMedicine, London

Dr Andrew HoyPresident, Association of Palliative Medicine

Tom Hughes HalletMarie Curie Cancer Care

Professor Ross LawrensonUniversity of Surrey

Dr Michael PearsonRoyal College of Physicians,London

David PrailHelp the Hospices

Professor Mike RichardsDepartment of Health, London

Eve Richardson and Peter Tebbit National Council for Hospices andPalliative Care Services

Dame Cicely SaundersFounder Hospice Movement

Gail SharpMarie Curie Cancer Care

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

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 in1977 with a donation from Virgilio andLoredana Floriani, and was the first in Italy toset up free home care for terminally illpatients. The aim of the Foundation is thedissemination and application of palliativecare to assist terminally ill patients, care thattakes account of all aspects of the patient’ssuffering: physical, psychological and social.The Foundation’s other concept is thatpatients and their families are followed atevery step along the final difficult journey.

With the aim of spreading the application ofpalliative care in Italy and throughout theworld, the Floriani Foundation has promotedand supported the setting up of theEuropean Association for Palliative Care, theItalian Association for Palliative Care and theItalian School of Palliative Care.

The Floriani Foundation also founded theAssociation of Friends of the FlorianiFoundation, whose purpose is, in addition topromoting and organizing events, to raisefunds and carry out the aims of theFoundation.

PALLIATIVECARE

THE SOLIDFACTS

The EuropeanAssociation ofPalliative Care

The Open SocietyInstitute Network

Public HealthProgramme

King’s CollegeLondon

The EuropeanInstitute ofOncology FONDAZIONE FLORIANI

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