EAPC update White Paper on standards and norms for ......of Palliative Care in Europe, led by Carlos...

278 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)

EAPC update

1. BackgroundThe modern hospice movement was introducedby Cicely Saunders with the opening of St Christopher’s Hospice in London in 1967.However, as early as 1975, Balfour Mount founda confusion of terms when he looked for adesignation for his new inpatient unit inMontreal, as in French-speaking Canada‘hospice’ was already used in a differentcontext, leading to the introduction of the term‘palliative care’.

The struggle for a common language has beengoing on since then in hospice and palliativecare throughout the world and has hamperedthe development of international standards andnorms. Recently, the European Association forPalliative Care (EAPC) commissioned a survey onthe development of palliative care in Europeancountries. The Task Force on the Developmentof Palliative Care in Europe, led by CarlosCenteno and David Clark, has just published theresults in the EAPC Atlas of Palliative Care inEurope, providing for the first time valid data forcomparison of the state of palliative care acrossEuropean countries.1,2 This evaluation showedsome common structures, but also a wide varietyin the structure of service development and caredelivery. These differences are at least partlyrelated to different understanding of theunderlying concepts and the terms of palliativemedicine. The development of a commonterminology has been claimed as a prerequisitefor meaningful comparisons.3

Following this lead, the EAPC is now puttingforward suggestions for a common European

terminology following a consensus process withthe national associations. Norms will bedefined on the basis of this consensualterminology. Guidance on norms and standardsare necessary not only for healthcareprofessionals working in hospice and palliativecare settings, but also for decision-makers inhealthcare who are responsible for adequateaccess to palliative care for patients.

With the ongoing development of palliativecare throughout Europe, decision-makers arechallenged not only to decide where and whenpalliative care services should be developed, butalso how they should be equipped andconfigured. Adequate structural quality is aprerequisite for high quality of care.Administrative and political decision-makerswill aim for cost-effectiveness, and try to reducecosts by allocating a minimum of staff orreimbursement. Care providers will negotiatefor adequate staff resources necessary for highquality of care. In this conflict, both sides willseek guidance on structural quality.

In this paper, the EAPC presents norms onstructural quality for the provision of palliativecare with in- and outpatient services in differentsettings. This White Paper takes into account thedifferent concepts in the European countriesand regions. This is acknowledged by thedescription of norms rather than the definitionof standards. Whereas standards would implyan absolute limit below which quality palliativecare is not possible (minimal standards), normsrepresent a consensus on quality goals that haveto be aimed for (aspirational norms). If (or

White Paper on standards and norms for hospice andpalliative care in Europe: part 1Recommendations from the European Association for Palliative Care

In this official position paper of the European Association for Palliative Care (EAPC), Lukas

Radbruch, Sheila Payne and the Board of Directors of the EAPC outline and explain the

association’s recommendations for a common terminology and common quality norms

279EUROPEAN JOURNAL OF PALLIATIVE CARE, 2009; 16(6)

EAPC update

when) norms are achieved, high quality can besafely expected.

2. MethodsThis White Paper is designed to provideguidance and recommendations for serviceproviders, stakeholders and decision-makers.The first draft was presented at a cancerconference in February 2008 during theSlovenian presidency of the European Union.

As previously stated, the EAPC presentsnorms and working definitions rather thanstandards. Standards set rigid limits with cut-offvalues, implying that units not achieving themwould lose their specialist status. EAPC normsaffirm how things ought to be to provide high-quality palliative care, but services that do notmeet one or more of these norms due to localor regional differences will not be discriminatedagainst. Taking into account the differences inthe healthcare systems as well as differentcultural backgrounds, it does not seem possibleto agree on standards with national associationsin more than 20 countries. However, aconsensus on norms does seem realistic.

The Board of Directors of the EAPC gave theremit of preparing this paper to a writingcommittee (Saskia Jünger, Sheila Payne andLukas Radbruch). The draft manuscript wasreviewed by experts within the EAPC (Franco DeConno, Carl-Johan Fürst, Geoffrey Hanks, IreneHigginson, Stein Kaasa, Phil Larkin, FriedemannNauck). The draft was revised with the feedbackfrom these experts and this revised draft wascirculated to the Board members of the nationalmember associations of the EAPC. Feedbackfrom the national associations was elicited witha Delphi procedure, asking for the level ofagreement or disagreement with each normsuggested. Representatives of 35 differentnational hospice and palliative care associationsfrom 22 European countries have participatedin the consensus procedure. Using the feedbackfrom the Delphi process, a final revision of thepaper was prepared. This final version wassubmitted to the Board of Directors of the EAPCand adopted as an official position paper.

2.1 The purpose of normsNorms can be developed on a national and a regional/local level. The national levelrepresents a uniform strategy for developmentand control; it can save time and energy. At theregional or local level, the national norms areadapted to the specific characteristics of the

respective regions or institutions. Evidently, thebest approach results from a combination ofboth.4 The introduction of norms presumes afar-reaching consultation and agreement withall involved participants, in order to ensurevalidity, as well as relevance. The aims and goalsof palliative care norms are outlined in Box 1.

2.2 Key areas of norms in palliative careThis paper is not based on a systematic review,but rather on a scoping of publications andother sources from acknowledged officialinstitutions such as the Council of Europe. Thekey areas outlined in this paper have beenderived from existing documents on norms andstandards in palliative care from differentorganisations, associations, nations andcommittees.4–7 This paper covers the followingkey elements of palliative care:l Definition and terminology of palliative care

and hospice carel Common values and philosophyl Levels of carel Patient groupsl Services and settings.

Other key areas – such as availability of, andaccess to, services; education for healthcareproviders; clinical audit and documentationstandards; public education and awareness; andresearch – are not included in this paper andwill be covered separately.

2.3 Sources of biasThe consensus-building process on norms forquality palliative care in the European Union

n Promote quality and reduce variation in newand existing programmes

n Develop and encourage continuity of careacross settings

n Facilitate collaborative partnerships amongpalliative care programmes, communityhospices and a wide range of other healthcaredelivery settings

n Facilitate the development and continuingimprovement of clinical palliative careprogrammes

n Establish uniformly accepted definitions of theessential elements in palliative care thatpromote quality, consistency and reliability ofthose services

n Establish national goals for access to qualitypalliative care

n Foster performance measurement and qualityimprovement initiatives

Box 1. Aims/goals of palliative care norms5


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bears several challenges due to the considerableheterogeneity of service provision in thedifferent countries. Some types of services havebeen developed only in certain countries.1 Forexample, the results of the study of the EAPCTask Force revealed that, among 52 Europeancountries, only five countries have a welldeveloped and extensive network of inpatienthospices. In contrast, other countries have amuch higher proportion of home-care teams.This leads to the question of whether acommon approach will do justice to thedifferent regional, geographical and culturalfocuses regarding the provision of palliativecare. The same is true for the issue of terms anddefinitions. Herein, the task of attainingconsensus might be even more challengingthan in North America. After all, the EuropeanUnion consists of countries with millennia ofhistory and language that keep them separated– and it must be acknowledged that there is a lotof pride in the differences.3

Therefore, the consensus building process hasto take into account whether European normsof care provision can be dovetailed to therespective demographical and cultural aspectsin the different countries and regions.

Palliative care policy is a rapidly evolvingfield; since the start of the European consensusprocess, two important government reportshave been published. In July 2008, the End ofLife Care Strategy for England was published bythe Department of Health;8 in April 2009, thesecond edition of the consensus guidelines ofthe National Consensus Project of the USA wasreleased.9 The updates of this second edition, aswell as specific guidelines of the End of Life CareStrategy, could not be considered in theEuropean consensus process. By means of a posthoc validation, the writing committee hasverified that the statements in this White Paperare still in accordance with therecommendations in these recent documents.

3. TerminologyThe attempt to examine and compare palliativeand hospice care in Europe revealed aheterogeneous terminology.1,10 The differencesin terminology did not only appear in thescientific literature, but also in texts of law,government bills and expert statements ofrelevant associations.10 For example, by means ofa discourse analysis of palliative care definitions,Pastrana et al have noticed the use of differentterms referring to overlapping medical fields

such as ‘hospice’, ‘hospice care’, ‘continuingcaring’, ‘end-of-life care’, ‘thanatology’, ‘comfortcare’ and ‘supportive care’.11 Moreover, differentterms may trace back to different culturalbackgrounds. For example, in the Germanlanguage, there is no direct equivalent for theterm palliative care, and thus ‘Palliativmedizin’is used both for palliative care and palliativemedicine.11 However, the synonymous use of‘Palliativmedizin’ (palliative medicine) withpalliative care has led to concerns about amedicalisation of palliative care in Germany.11

Therefore, some experts even used the Englishterm ‘palliative care’ to differentiate frompalliative medicine. Only in the last year has theterm ‘Palliativversorgung’ been accepted assynonymous with palliative care. Similarly, inother European languages, it is not evident inhow far the same concepts are intended by theterm officially used for palliative care (see Table 1).

It is obvious that an effective Europeanapproach to quality palliative care demands anunambiguous use of terms, which implies, as aprerequisite, the mutual agreement on thedefinitions of these terms. The Task Force on theDevelopment of Palliative Care in Europe hascompared service development and provision ofcare in 42 European countries in the Atlas ofPalliative Care.2 In a critical appraisal of the Atlas,the importance of a common language wasunderlined, as comparative charts will only haveleverage when they are based on a sharedlanguage where the same word will have thesame meaning in each country where it is used.3

Realising that full consensus will not bepossible within the scope of languages andcultures in Europe, the EAPC will use thefollowing working definitions of palliative careand hospice care.

3.1 Palliative carePalliative care is the active, total care of thepatient whose disease is not responsive tocurative treatment. Control of pain, of othersymptoms, and of social, psychological andspiritual problems is paramount. Palliativecare is interdisciplinary in its approach andencompasses the patient, the family and the community in its scope. In a sense,palliative care is to offer the most basicconcept of care – that of providing for theneeds of the patient wherever he or she iscared for, either at home or in the hospital.Palliative care affirms life and regards dying as a normal process; it neither hastens nor

An effectiveEuropeanapproach to qualitypalliative caredemands anunambiguoususe of terms


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postpones death. It sets out to preserve the bestpossible quality of life until death.12

Despite the cultural differences regarding thepalliative care approach across Europe, the EAPCdefinition of palliative care has had a unifyingimpact on the palliative care movements andorganisations of many European countries.13

The EAPC definition is slightly different fromthe definition of the World Health Organization(WHO), given below.

Palliative care is an approach that improvesthe quality of life of patients and their familiesfacing the problems associated with life-threatening illness, through the preventionand relief of suffering by means of earlyidentification and impeccable assessment andtreatment of pain and other problems,physical, psychosocial and spiritual.14

This WHO definition has replaced an olderdefinition of the WHO that was restricted topatients ‘whose disease is not responsive tocurative treatment’.15 The new and modifiedWHO definition from 2002 extends the scope

of palliative care to patients and families ‘facing the problems associated with life-threatening illness’.16

3.2 Hospice careHospice care is for the whole person, aimingto meet all needs – physical, emotional, socialand spiritual. At home, in day care and in thehospice, they care for the person who is facingthe end of life and for those who love them.Staff and volunteers work in multi-professional teams to provide care based on individual need and personal choice,striving to offer freedom from pain, dignity,peace and calm.17

The definition of hospice care meets withmuch less consensus than the definition ofpalliative care. There seem to be fundamentaldifferences in the understanding of hospicecare, which probably reflect the different waysthat hospices are used in Western Europe. Insome countries, there is a clear distinctionbetween hospice and palliative care, whereas in

Table 1. Conventional terms for ‘palliative care’ in different European countries

Country Terms for ‘palliative care’ Other terms

Austria Palliativ(e) Care; Palliativmedizin; palliative Lindernde Fürsorge (relief and comfort)Betreuung / Palliativbetreuung; Palliativversorgung

Belgium (Flemish) Palliatieve zorg

Belgium (Walloon) Soins palliatifs

Republic of Croatia Paljativna skrb

Cyprus Anakoufisiki frontitha / frontida Paragoritikes agogis (relief or comfort)

Czech Republic Paliativni pece

Denmark Palliative indsats; palliative behandeling (og pleje)

France Soins palliatifs Accompagnement de fin de vie (accompanimentat the end of life)

Germany Palliativmedizin; Palliativversorgung Hospizarbeit ([volunteer] hospice work)

Greece Anakoufistiki frontida

Hungary Palliatv ellts

Iceland Líknarmedferd / líknandi medferd

Ireland Palliative care

Israel Tipul tomeh / tomech; tipul paliativi Palliative care

Italy Cure palliative

Latvia Paliativa aprupe

The Netherlands Palliatieve zorg Terminale zorg (terminal care)

Norway Palliativ behandeling; palliativ omsorg; Lindrende behandling og omsorg (relief and palliativ madisin; palliativ pleie comfort); palliative care

Portugal Cuidados paliativos

Spain Cuidados paliativos

Sweden Palliativ vård; palliative medicin

Switzerland Palliative Care; Palliative Betreuung

UK Palliative care; palliative medicine Supportive and palliative care; end-of-life care


EAPC update

other countries, the terms are usedsynonymously. If a distinction is made, it can berelated to the institutional framework,describing a palliative care unit as a ward withina general hospital versus an inpatient hospice asfree-standing service.

However, the distinction can also relate tothe indications for admission or the type ofinterventions offered. Using this framework, inGermany, for example, a palliative care unit aspart of a hospital primarily aims at crisisintervention and medical stabilisation, whereasan inpatient hospice provides end-of-life carefor patients who can not be cared for at home.This categorisation would not be used in other countries.

In some countries, a similar distinction ismade for outpatient services. In Germany,palliative home-care services focus on nursing,whereas home-care hospice services mainlyprovide volunteer psychosocial support.

In some countries, the meaning of hospicerepresents the philosophy of care more than acertain type of setting where care is provided.18

In Germany, for example, hospice work has beenused predominantly for the provision of carethat has developed as a community movement,depending strongly on volunteer engagement,whereas palliative care and, more specifically,palliative medicine are seen as a medical field.

However, as the underlying philosophy aswell as the definitions of palliative care andhospice care overlap to a large extent, we will use the term ‘palliative care’ throughout this paper to represent both hospice andpalliative care.

3.3 Supportive careSupportive care is the prevention andmanagement of the adverse effects of cancerand its treatment. This includes physical andpsychosocial symptoms and side-effects acrossthe entire continuum of the cancerexperience, including the enhancement ofrehabilitation and survivorship.19

There is considerable overlap and no cleardifferentiation between the use of the terms‘palliative care’ and ‘supportive care’.

However, most experts agree that supportivecare is more appropriate for patients stillreceiving antineoplastic therapies and alsoextends to survivors, whereas palliative care hasits major focus on patients with far advanceddisease where antineoplastic therapies havebeen withdrawn.20 However, a national survey

in Germany has shown that 9% of the patientsin palliative care units received chemotherapy.21

Cancer survivors would not be included in thetarget groups of palliative care. On the otherhand, palliative care covers not only cancerpatients, but also other patient groups with life-threatening diseases.

Supportive care should not be used as asynonym of palliative care. Supportive care ispart of oncological care, whereas palliativecare is a field of its own extending to allpatients with life-threatening disease.

3.4 End-of-life careEnd-of-life care may be used synonymouslywith palliative care or hospice care, with endof life understood as an extended period ofone to two years during which thepatient/family and health professionalsbecome aware of the life-limiting nature oftheir illness.

The term ‘end-of-life care’ is widely used inNorth America and it has been picked up byregulatory bodies in European countries,sometimes with the understanding thatpalliative care is associated predominantly withcancer, whereas end-of-life care would beapplicable to all patients. For example, inEngland, the NHS End of Life Care Strategy waspublished in 2008 to improve dying for allpatients wherever they receive care.8

End-of-life care may also be understoodmore specifically as comprehensive care for dying patients in the last few hours or days of life.

End-of-life care in the restricted time frame ofthe last 48 or 72 hours of life is the goal of theLiverpool Care Pathway for the Dying Patient.This approach has been promoted to transferthe hospice model of care to patients dying innon-specialised settings.22 Used with thisconnotation, end-of-life care may also beimplemented as a standard of care for dyingpatients not requiring palliative care.

Considering the ambiguity of the term andthe degree of overlap between end-of-life careand palliative care, no specific reference will bemade to end-of-life care in this paper.

3.5 Terminal careTerminal care is an older term that has beenused for comprehensive care of patients withadvanced cancer and restricted life expectancy.

More recent definitions of palliative care are not restricted to patients with restricted life

Supportive care is theprevention andmanagement ofthe adverseeffects ofcancer and itstreatment


EAPC update

expectancy in the final stage of the disease. The term ‘terminal care’, therefore, has lost relevance and should not be used any more, or only to describe the care given during the very last stage (the last few days) of illness.

3.6 Respite careFamily members or other primary caregiverscaring for a palliative care patient at homemay suffer from the continuous burden of care. Respite care may offer these patients and their caregivers a planned orunplanned break.23

Respite care can be provided in day-carefacilities, inpatient units or through specialisthome-care services.

4. The philosophy of palliative careDespite the differences among nationalapproaches to palliative care, a series ofcommon values and principles can beidentified in the literature, which have beenrecognised and endorsed by hospice andpalliative care activities.11,24

Throughout the European countries, a setof common values is acknowledged amongpalliative care experts. This includes the valueof patient autonomy and dignity, the need forindividual planning and decision-making andthe holistic approach.

4.1 AutonomyIn palliative care, the intrinsic value of eachperson as an autonomous and uniqueindividual is acknowledged and respected.Care is only provided when the patient and/orfamily are prepared to accept it. Ideally, thepatient preserves his/her self-determinationregarding the power of decision on place ofcare, treatment options and access to specialistpalliative care.

Patients should be empowered to makedecisions if they wish. This requires theprovision of adequate information ondiagnosis, prognosis, treatment and careoptions and all other relevant aspects of care.

However, there is an ongoing discussion onthe ethical challenge when decision-makingcapacity is not available or not wanted by thepatient, and information and decision-makingshift to the family or the palliative care staff.The balance between autonomy and protective care seems to be influenced bycultural factors, as, in some countries, the shift

of decision-making from patient to caregiver isreported more frequently.

4.2 DignityPalliative care is supposed to be performed in a respectful, open and sensitive way,sensitive to personal, cultural and religiousvalues, beliefs and practices as well as the lawof each country.

As with quality of life, dignity seems to be anindividual concept including different domainsand priorities for each patient. Depending onthe definition, dignity may be seen rather as aninherent property than as an item that can bedamaged or lost. Following this view, palliativecare is challenged to provide a setting where thepatient can feel and enact their dignity.

4.3 Relationship between patient–healthcareprofessionalsPalliative care staff should maintain acollaborative relationship with patients andfamilies. Patients and families are importantpartners in planning their care and managingtheir illness.

Palliative care holds a salutogenic view withemphasis on the resources and competencies ofpatients, and not simply on their difficulties.11

Herein, a resilience-oriented approach hasrecently received increasing recognition.Resilience describes the ability of patients to dealwith incurable disease and related problems,and with the change of perspective due to arestricted life expectancy. The concept ofresilience offers a change of paradigm: whereasthe focus on symptoms, risks, problems andvulnerability is deficit-oriented, the focus onresilience is resource-oriented. Resilienceemphasises the importance of public health andcreates a partnership between patients,professionals and community structures.25

4.4 Quality of lifeA central goal of palliative care is to achieve,to support, to preserve and to enhance thebest possible quality of life.

Care is guided by the quality of life as definedby the individual. More specifically, bio-psychosocial and spiritual quality of life havebeen named, and standardised questionnairesare used for the assessment of health-relatedand disease-specific quality of life. However, themeaning of ‘quality of life’ can only bedetermined by each palliative care patientindividually for themselves.11 Relevant

Throughout the Europeancountries, a setof commonvalues isacknowledgedamongpalliative careexperts


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dimensions of the individual quality of life, aswell as priorities within these dimensions, oftenshift in relation to the progression of thedisease. Quality of life seems to depend moreon the perceived gap between expectations andactual performance status than on an objectiveimpairment of function.

4.5 Position towards life and deathMany definitions of palliative care include aposition towards life and death.11 The firstdefinition of the WHO in 1990 postulated that‘palliative medicine affirms life and regardsdying as a normal process’, and otherdefinitions have shared this position. Death isseen on the same level as life, inseparable fromit, and as a part of it.

Palliative care seeks neither to hasten deathnor to postpone it.

The provision of euthanasia and physician-assisted suicide should not be part of theresponsibility of palliative care.13

‘The value of life, the natural process ofdeath, and the fact that both provideopportunities for personal growth and self-actualisation’ should be acknowledged.24

4.6 CommunicationGood communication skills are an essentialprerequisite for quality palliative care.Communication refers to the interactionbetween patient and healthcare professionals,but also to the interaction between patientsand their relatives as well as the interactionbetween different healthcare professionalsand services involved in the care.

Dissatisfaction and complaints about care canoften be attributed to ineffectivecommunication rather than inadequate servicedelivery,4 whereas effective communication hasbeen shown to improve patient care.26

Communication in palliative care is much morethan the mere exchange of information.Difficult and sometimes painful concerns haveto be considered, which requires time,commitment and sincerity. For palliative carestaff, it can be a challenging task to conveyhonest and complete information on the onehand, and respect the patient’s and theirfamilies’ hopes for survival despite theoncoming death on the other hand.27 Adequateprerequisites for effective communication haveto be provided,4 including training andeducation, appropriate space andaccommodation, time for interaction with

patients and their families and for exchangewith the team, as well as access to up-to-dateinformation technology.

4.7 Public educationThe Council of Europe claims that it is ofutmost importance to create a climate ofacceptance for palliative care in the memberstates of the European Union.4 Therefore, it isessential to build community capacity and topromote preventive healthcare that will leavefuture generations less afraid of the dying andbereavement that will confront all of us.25

4.8 Multiprofessional and interdisciplinaryapproachTeam work is regarded as a central componentof palliative care.28 A multiprofessional teamincludes members from different healthcareand non-healthcare professions and disciplineswho work together to provide and/or improvecare for patients with a particular condition.The composition of multiprofessional teamswill differ according to many factors, includingthe patient groups served, the extent of the careprovided and the local area of coverage.29

Palliative care is supposed to be providedwithin a multiprofessional andinterdisciplinary framework. Although thepalliative care approach can be put intopractice by a single person from a distinctprofession or discipline, the complexity ofspecialist palliative care (see under Chapter 5.‘Levels of palliative care’) can only be met bycontinuous communication and collaborationbetween the different professions anddisciplines in order to provide physical,psychological, social and spiritual support.

There are clear indications that teamwork inpalliative care is advantageous for the patient.4

A systematic literature review on theeffectiveness of specialist palliative care teams incancer care by Hearn and Higginson hasrevealed evidence that specialist teams inpalliative care improve satisfaction, and identifyand deal more with patient and family needs,compared with conventional care.30

Moreover, multiprofessional approachesturned out to reduce the overall cost of care byreducing the amount of time patients spend inacute hospital settings. A more recent reviewsupported the evidence of the positive effect ofpalliative care teams, with the strongest effectfor patient pain and symptom control.31 Theextension of the team can be dealt with flexibly

Palliative careseeks neitherto hasten deathnor topostpone it


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and has to be determined by the patient’sneeds. The minimal version, therefore, canconsist of a general practitioner and aspecialised nurse. However, in most cases, socialworkers, psychologists and/or volunteers areinvolved in the teams. The Council of Europerecommends that the leadership role of everysection in specialised palliative care teamsshould be adopted by an approved professionalqualified in palliative care.4

4.9 Grief and bereavementPalliative care offers support to family and otherclose carers during the patient’s illness, helpsthem prepare for loss and continues to providebereavement support, where required, after thepatient’s death. Bereavement services arerecognised as a core component of palliativecare service provision.4,5

Grief and bereavement risk assessment isroutine, developmentally appropriate andongoing for the patient and familythroughout the illness trajectory, recognisingissues of loss and grief in living with a life-threatening illness. Bereavement services andfollow-up support are made available to thefamily after the death of the patient.

5. Levels of palliative carePalliative care can be delivered on differentlevels. At least two levels should be provided: a palliative care approach and specialistpalliative care.

Currently, in most documents, a two-levelapproach of palliative care can be found; that is,the differentiation between a palliative careapproach and specialist palliative care. Thepalliative care approach would be used insettings and services only occasionally treatingpalliative care patients. In contrast, specialistpalliative care applies to a team of appropriatelytrained physicians, nurses, social workers,chaplains and others whose expertise is requiredto optimise quality of life for those with a life-threatening or debilitating chronic illness.5

5.1 Palliative care approachThe palliative care approach is a way tointegrate palliative care methods andprocedures in settings not specialised inpalliative care. This includes not onlypharmacological and non-pharmacologicalmeasures for symptom control, but also communication with patient and family as well as with other healthcare

professionals, decision-making and goal-setting in accordance with the principles ofpalliative care.

The palliative care approach should be madeavailable for general practitioners and staff ingeneral hospitals, as well as for nursing servicesand for nursing home staff. To enable theseservice providers to use the palliative careapproach, palliative care has to be included inthe curricula for medical, nursing and otherrelated professionals’ basic education. TheCouncil of Europe recommends that allprofessionals working in healthcare should beconfident with the basic palliative careprinciples and able to put them into practice.4

5.2 General palliative careThis two-step ladder of care levels can beextended to three steps, with a palliative careapproach, general palliative care and specialistpalliative care. General palliative care isprovided by primary care professionals andspecialists treating patients with life-threateningdiseases who have good basic palliative careskills and knowledge.

Professionals who are involved morefrequently in palliative care, such asoncologists or geriatric specialists, but do not provide palliative care as the main focus of their work, still may have acquiredspecial education and training in palliativecare and may provide additional expertise.These professionals can provide generalpalliative care.4

5.3 Specialist palliative carePatients with life-threatening disease, and thoseimportant to them, may have complex needs,which require the input of the specialistpalliative care team.29 Specialist palliative caredescribes services whose main activity is theprovision of palliative care. These servicesgenerally care for patients with complex anddifficult needs and therefore require a higherlevel of education, staff and other resources.4

Specialist palliative care is provided byspecialised services for patients with complexproblems not adequately covered by othertreatment options.

All patients with progressive incurable diseasesshould have access to specialist palliative careservices, which address proactively all thesymptoms of their condition and the effect thesesymptoms have on them and their families/carers.29 Patients with complex palliative care

The palliativecare approachis a way tointegratepalliative caremethods andprocedures insettings notspecialised inpalliative care


EAPC update

needs require a wide range of therapeuticinterventions for symptom control. The relevantspecialist palliative care services must have accessto the necessary level of trained staff to safelymanage these interventions.

Specialist palliative care services require a team approach, combining a multi-professional team with an interdisciplinarymode of work. Team members must be highlyqualified and should have their main focus ofwork in palliative care.

The provision of specialist palliative careservices has to be performed by palliative careprofessionals who have undergone recognisedspecialist palliative care training.5,29 The teammembers are supposed to have expertise in theclinical management of problems in multipledomains in order to meet the patient’s complexneeds. Their work reflects substantialinvolvement in the care of patients with life-threatening or debilitating chronic illness, andtheir families.

5.4 Centres of excellenceThe ladder can also be extended to a fourthlevel, that of centres of excellence. Centres of excellence should provide specialistpalliative care in a wide variety of settings,including in- and outpatient care, home care and consultation services, and shouldprovide academic facilities for research andeducation. The role of centres of excellence is still under discussion, and the position ofsuch centres in a multilevel approach willdepend on that discussion.

Centres of excellence in palliative careshould act as a focus for education, researchand dissemination, developing standards andnew methods.

6. Population served6.1 PatientsPalliative care is not restricted to predefinedmedical diagnoses, but should be available forall patients with life-threatening diseases.

Palliative care is appropriate for any patientand/or family living with, or at risk ofdeveloping, a life-threatening illness due to anydiagnosis, with any prognosis, regardless of age,and at any time they have unmet expectationsand/or needs and are prepared to accept care.32

Palliative care may complement and enhancedisease-modifying therapy or it may becomethe total focus of care. Some aspects of palliativecare may also be applicable to patients at risk of

developing an illness and their families. Each year, 1.6 million patients in the

European region will die from cancer andapproximately 5.7 million from non-cancerchronic diseases.

In the European region (as defined by theWHO), 881 million inhabitants are registered.Age-standardised death rates have beencalculated for this region, with 9,300 deaths permillion inhabitants. Out of these,approximately 1,700 deaths are related to cancerand 6,500 to non-cancer chronic diseases.33 Thiscalculation is supported by a recent reviewsuggesting that there are 1.7 million cancerdeaths per year in Europe.34

The vast majority of these patients will sufferfrom pain, dyspnoea and other physicalsymptoms or will require support withpsychosocial or spiritual problems with theprogression of their disease. An Australianworkgroup estimated the population forpalliative care to be between 50% and 89% of alldying patients, using different approaches in aconceptual framework.35 Whereas a palliativecare approach will provide adequate care formany of these patients, it has been estimatedthat at least 20% of cancer patients and 5% ofnon-cancer patients require specialist palliativecare in the last year of their life.36 However,these percentages have been challenged in theconsensus procedure, and much higherpercentages of cancer as well as non-cancerpatients requiring palliative care have beensuggested. These estimates will also dependupon specific patterns of disease in differentcountries. Treatment times will vary from a fewdays to several years, but, with the advances ofmodern medicine, many of these patients willneed palliative care for longer periods of timeand not only in the final year of their life.

This means that, at any given time, morethan 320,000 cancer patients and 285,000non-cancer patients require support or carefrom specialist palliative care services in theEuropean region (as defined by the WHO).

These numbers are rather conservativeestimates, as symptom load and palliative careneeds are often not recognised andconsequently may be much higher thanestimated. These estimates also assume thatgeneral palliative care is well developed andgenerally available, which is true only for fewEuropean countries. Other reports from the UKhave used higher numbers of cancer and non-cancer deaths and estimated considerably

Specialistpalliative careservices require a teamapproach


EAPC update

higher percentages of patients requiringspecialist palliative care.37

In all European countries, palliative care ispredominantly delivered to patients with faradvanced cancer. Patients with other diseases,such as neurological diseases, HIV/AIDS, orwith cardiac, pulmonary or renal failure, mayhave the same palliative care needs as cancerpatients, but will find it much harder to accesspalliative care.

Prevalence of physical symptoms as well aspsychological, social and spiritual needs are asfrequent in patients with chronic neurological,cardiac, cerebrovascular, pulmonal or renal disease or HIV/AIDS. The pattern ofsymptoms and the disease trajectory may bedifferent from those of cancer patients.38,39

However, many of these patients require eithera palliative care approach or even specialistpalliative care, as intensity and complexity ofsymptoms and problems may be similar tothose of cancer patients.

Providing access to high-quality palliativecare for non-cancer patients should be apriority of national and European healthpolicy development.

Today, more than 95% of all patientscurrently treated in specialist palliative careservices suffer from cancer.40 However, the lowpercentage of non-cancer patients is primarilyrelated to higher barriers preventing access ofthese patients to palliative care providers, aspalliative care in the public and medicalopinion is often perceived to be restricted tocancer patients.

Adequate provision of palliative care fornon-cancer patients requires additionalresources. If non-cancer patients were to haveequal access to palliative care compared tocancer patients, the percentages of patientsrequiring palliative care are estimated at 40%(non-cancer patients) and 60% (cancerpatients) respectively.

With the demographic changes of agingpopulations, the pattern of mortality alsochanges.41 More people are now living longerand the proportion of those living beyond 60years has increased, and will increase furtherover the next 20 years.41 With increasing lifeexpectancy, more people die as a result of severechronic diseases, such as heart disease,cerebrovascular disease and respiratory disease,as well as of cancer. As more people live to olderages, and as chronic diseases become morecommon with older age, the numbers of people

in the population living with, and sufferingfrom, these diseases will increase as well. Withongoing medical progress, patients will survivelonger with chronic disabling disease, and inconsequence will require palliative care over alonger period of time.

The number of cancer patients requiringpalliative care will also increase in the years to come, as the number of patients living with cancer is expected to increase, due toearlier diagnosis, improved treatment andlonger survival.40

National health strategies should includeplans to cover an increasing demand. A recentanalysis of past trends and future projections inmortality in England and Wales underlined theurgent need to plan for a large increase of agingand deaths, requiring either substantially moreinpatient facilities or extensive development ofcommunity care.42

6.2 Disease stageThere is no predefined time point in thecourse of the disease marking the transitionfrom curative to palliative care.

Palliative care is appropriate for all patientsfrom the time of diagnosis with a life-threatening or debilitating illness.5 The term‘life-threatening or debilitating illness’ here isassumed to encompass the population ofpatients of all ages with a broad range ofdiagnostic categories, who are living with apersistent or recurring condition that adverselyaffects daily functioning or will predictablyreduce life expectancy.

Most patients will need palliative care onlywith far advanced disease, but some patientsmay require palliative care interventions forcrisis management earlier in their diseasetrajectory. This can be a period of several years,months, weeks or days.4

The transition from curative to palliative careis often gradual rather than a clear time point,as the treatment goal shifts more and morefrom life prolongation at all costs topreservation of quality of life, with a need tobalance between treatment benefit and burden.

6.3 Children and adolescentsPalliative care for children represents aspecial, albeit closely related field, to adultpalliative care.43

The Council of Europe points to the specificchallenge of palliative care for children withincurable and life-threatening diseases.4

Providingaccess to high-qualitypalliative carefor non-cancerpatients shouldbe a priority

Palliative care for children begins when theillness is diagnosed, and continues regardlessof whether or not the child receives treatmentdirected at the disease.44 The unit of care is thechild and family.

Life-limiting illness in children is defined as acondition where premature death is usual; forexample, Duchenne muscular dystrophy.44 Life-threatening illnesses are those with a highprobability of premature death due to severeillness, but where there is also a chance of long-term survival into adulthood; for example,children receiving cancer treatment or admittedto intensive care after an acute injury.

Paediatric palliative care is characterised by aheterogeneous range of conditions and a higherproportion of non-cancer diagnoses than adultpalliative care. Palliative care for children andadolescents can be summarised in fourcategories, based on a guide to the developmentof children’s palliative care services produced bythe Association for Children’s Palliative Care(ACT) and the Royal College of Paediatrics andChild Health in the UK.45

l Group 1: life-threatening conditions forwhich curative treatment may be feasible butcan fail, where access to palliative careservices may be necessary alongside attemptsat curative treatment and/or if treatment fails.

l Group 2: conditions, such as cystic fibrosis,where premature death is inevitable, wherethere may be long periods of intensivetreatment aimed at prolonging life andallowing participation in normal activities.

l Group 3: progressive conditions withoutcurative treatment options, where treatmentis exclusively palliative and may commonlyextend over many years; for example, Battendisease and muscular dystrophy.

l Group 4: irreversible but non-progressiveconditions with complex healthcare needs,leading to complications and likelihood ofpremature death. Examples include severecerebral palsy and multiple disabilitiesfollowing brain or spinal cord insult. Specific paediatric palliative care services

for inpatient treatment and home care shouldbe implemented. A full range of clinical andeducational resources must be available forthe child and family, in a format that isappropriate to age and to cognitive andeducational ability.44

The document on standards for paediatricpalliative care in Europe prepared by theSteering Committee of the EAPC Task Force on

Palliative Care for Children and Adolescents(IMPaCCT) reveals that palliative care servicesare insufficiently available for children andtheir families.44 For example, a lack ofcommunity resources enabling families to carefor their child at home has been noticed, as wellas a shortage of services for respite care.

The family home should remain the centre of caring whenever possible. Everyfamily should have access to a multi-disciplinary, holistic paediatric palliative care team at home.44

The bold type in this text highlights the recommendationsmade by the EAPC. Part 2 of this EAPC White Paper will bepublished in the European Journal of Palliative Care 17.1.

Acknowledgements The research work was supported by an unrestricted grant from theDepartment of Palliative Medicine of the RWTH Aachen University(Germany). The manuscript was prepared by Saskia Jünger. We wouldlike to thank the experts who invested time and effort to review themanuscript: Franco De Conno, Carl-Johan Fürst, Geoffrey Hanks, IreneHigginson, Stein Kaasa, Phil Larkin and Friedemann Nauck. We wouldalso like to thank the Boards of Directors of the national associationsfor their dedicated participation in the Delphi procedure. Withouttheir engagement and support, it would not have been possible todevelop these recommendations so rapidly.

References 1. Centeno C, Clark D, Lynch T et al. Facts and indicators on palliativecare development in 52 countries of the WHO European region: resultsof an EAPC task force. Palliat Med 2007; 21: 463–471.2. Centeno C, Clark D, Lynch T et al. EAPC Atlas of Palliative Care inEurope. Houston: IAHPC Press, 2007.3. Von Gunten CF. Humpty-Dumpty Syndrome. Palliat Med 2007; 21:461–462.4. Council of Europe. Recommendation Rec (2003) 24 of the Committee ofMinisters to member states on the organisation of palliative care, 2003.www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf (last accessed08/09/2009)5. National Consensus Project for Quality Palliative Care. ClinicalPractice Guidelines for Quality Palliative Care, 2004. Pittsburgh, 2004.6. Lunder U, Sauter S, Fürst CF. Evidence-based palliative care: beliefsand evidence for changing practice. Palliat Med 2004; 18: 265–266.7. Tomlinson S. National Action Planning Workshop on End-of-life Care.Winnipeg: Health Canada Secretariat on Palliative and End-of-life Care,2002. 8. Department of Health. End of Life Care Strategy: Promoting high qualitycare for all adults at the end of life. London: DH, 2008.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_086277 (last accessed 08/09/2009)9. National Consensus Project for Quality Palliative Care. ClinicalPractice Guidelines for Quality Palliative Care, 2nd edn, 2009.www.nationalconsensusproject.org/Guideline.pdf (last accessed08/09/2009) 10. Jaspers B, Schindler J. Stand der Palliativmedizin und Hospizarbeit inDeutschland und im Vergleich zu ausgewählten Staaten (Belgien,Frankreich, Großbritannien, Niederlande, Norwegen, Österreich, Polen,Schweden, Schweiz, Spanien). Berlin: Enquete-Kommission desBundestages ‘Ethik und Recht der modernen Medizin’, 2005.11. Pastrana T, Jünger S, Ostgathe C, Elsner F, Radbruch L. A matter ofdefinition – key elements identified in a discourse analysis ofdefinitions of palliative care. Palliat Med 2008; 22: 222–232.12. European Association for Palliative Care. Definition of PalliativeCare, 1998. www.eapcnet.org/about/definition.html (last accessed08/09/2009)13. Materstvedt LJ, Clark D, Ellershaw J et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Palliat Med2003; 17: 97–101; discussion 102–179.14. Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: theWorld Health Organization’s global perspective. J Pain SymptomManage 2002; 24: 91–96.15. World Health Organization. Cancer pain relief and palliative care.Report of a WHO Expert Committee. Geneva: WHO, 1990.16. World Health Organization. National Cancer Control Programmes.Policies and managerial guidelines, 2nd ed. Geneva: WHO, 2002.17. Help the Hospices. Definition of hospice care.www.helpthehospices.org.uk/about-hospice-care/what-is-hospice-care/(last accessed 12/10/2009) 18. International Association for Hospice and Palliative Care.Definition of Hospice/Palliative Care. www.hospicecare.com/Organisation/#Definition (last accessed 08/09/2009)19. Multinational Association of Supportive Care in Cancer. MASCCstrategic plan, 2007. www.mascc.org (last accessed 12/10/2009)


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20. Smyth JF. Disclosing gaps between supportive and palliative care:the past 20 years. Support Care Cancer 2008; 16: 109–111.21. Radbruch L, Nauck F, Fuchs M et al. What is palliative care inGermany? Results from a representative survey. J Pain Symptom Manage2002; 23: 471–483.22. Gambles M, Stirzaker S, Jack BA, Ellershaw JE. The Liverpool CarePathway in hospices: an exploratory study of doctor and nurseperceptions. Int J Palliat Nurs 2006; 12: 414–421.23. Ingleton C, Payne S, Nolan M, Carey I. Respite in palliative care: areview and discussion of the literature. Palliat Med 2003; 17: 567–575.24. Lunder U. Identifying effective ways of implementation of palliativecare into Slovene health care system. Research Paper. Budapest: Center forPolicy Studies, Open Society Institute, 2005.25. Monroe B, Oliviere D (eds). Resilience in palliative care: achievementin adversity, 1st edn. Oxford: Oxford University Press, 2007.26. Effective Health Care. Informing, communication and sharing decisionswith people who have cancer. University of York, NHS Centre for Reviewsand Dissemination, 2000.27. National Institute for Health and Clinical Excellence. Improvingsupportive and palliative care for adults with cancer. The manual, 2004.www.nice.org.uk/nicemedia/pdf/csgspmanual.pdf (last accessed08/09/2009)28. Jünger S, Pestinger M, Elsner F, Krumm N, Radbruch L. Criteria forsuccessful multiprofessional cooperation in palliative care teams.Palliat Med 2007; 21: 347–354.29. Clinical Standards Board for Scotland. Clinical Standards forSpecialist Palliative Care. Edinburgh: NHS Scotland; 2002.30. Hearn J, Higginson IJ. Do specialist palliative care teams improveoutcomes for cancer patients? A systematic literature review. PalliativeMedicine 1998; 12: 317–332.31. Higginson IJ, Finlay IG, Goodwin DM et al. Is there evidence thatpalliative care teams alter end-of-life experiences of patients and theircaregivers? J Pain Symptom Manage 2003; 25: 150–168.32. Ferris FD, Balfour HM, Bowen K et al. A model to guide patient andfamily care: based on nationally accepted principles and norms ofpractice. J Pain Symptom Manage 2002; 24: 106–123.33. World Health Organization Regional Office for Europe. Mortalityindicators by 67 causes of death, age and sex (HFA-MDB), 2007.www.euro.who.int/InformationSources/Data/20011017_1 (lastaccessed 08/09/2009)34. Higginson IJ, Costantini M. Dying with cancer, living well withadvanced cancer. Eur J Cancer 2008; 44: 1414–1424.35. McNamara B, Rosenwax LK, Holman CD. A method for definingand estimating the palliative care population. J Pain Symptom Manage2006; 32: 5–12.36. Ministerium für Gesundheit, Soziales, Frauen und Familie desLandes Nordrhein-Westfalen. Rahmenprogramm zur flächendeckendenUmsetzung der ambulanten palliativmedizinischen und palliativ-pflegerischen Versorgung in Nordrhein-Westfalen. Kooperatives integriertesVersorgungskonzept, 2005. www.mags.nrw.de/08_PDF/002/konzept-palliativ.pdf (last accessed 08/09/2009)37. Higginson I. Palliative and terminal care. Health care needsassessment, 2nd series. Oxford: Radcliffe Medical Press, 1997.38. Lynn J, Adamson DM. Living well at the end of life: adapting healthcare to serious chronic illness in old age. Arlington, VA: Rand HealthCooperation, 2003.39. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories andpalliative care. BMJ 2005; 330: 1007–1011.40. Ireland National Advisory Committee. Report of the National AdvisoryCommittee on Palliative Care. Department of Health and Children, 2001.41. Davies E, Higginson IJ (eds). Better Palliative Care for Older People.Copenhagen: World Health Organization Regional Office for Europe, 2004.42. Gomes B, Higginson IJ. Factors influencing death at home in terminallyill patients with cancer: systematic review. BMJ 2006; 332: 515–521.43. World Health Organization. WHO Definition of Palliative Care.www.who.int/cancer/palliative/definition/en/ (last accessed 08/09/2009)44. Craig F, Abu-Saad Huijer H, Benini F et al; Steering Committee ofthe EAPC Task Force on Palliative Care for Children and Adolescents.IMPaCCT: standards for paediatric palliative care in Europe. EuropeanJournal of Palliative Care 2007; 14: 109–114.45. Association for Children’s Palliative Care (ACT), Royal College ofPaediatrics and Child Health. A guide to the development of children’spalliative care services. Bristol, London: ACT, 1997.

Lukas Radbruch, European Association for PalliativeCare (EAPC) President, Sheila Payne, EAPC Vice-President, and the Board of Directors of the EAPC(Michaela Bercovitch, Augusto Caraceni, Tine DeVlieger, Pam Firth, Katalin Hegedus, Maria Nabal,André Rhebergen, Esther Schmidlin, Per Sjøgren, CarolTishelman, Chantal Wood, and Honorary DirectorFranco De Conno)

Graded system of palliative care services*

Palliative care

Palliative care Specialist support Specialist approach for general palliative care palliative care

Acute care Hospital

Long-term care Nursing home, residential home

Home care General practitioners,community nursing teams

*Adapted from: Nemeth C, Rottenhofer I. Abgestufte Hospiz- und Palliativversorgung in Österreich. Wien: Österreichisches Bundesinstitut für Gesundheitswesen, 2004

Hospital palliative care support team Palliative care unit

Volunteer hospice Inpatient hospiceservice Home palliative care teams Home palliative

care teams, day-care centre

Main area of care provision for palliative care, supportive care and end-of-lifecare (using a narrow definition of end-of-life care)

Main area of care provision for palliative care, supportive care and end-of-lifecare (using an extended definition of end-of-life care)

Supportive care(for cancer patients)Supportive care(for cancer patients)

Patient distress/complexity ofsymptoms orproblems

Years Months Weeks Days

Disease trajectory/life expectancy

Palliative care End-of-life care

Death

Supportive careSupportive careSupportive careSupportive care

Palliative care

End-of-life care

Years Months Weeks Days Death

Disease trajectory/life expectancy

Non-cancer

Cancer


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… continued from the European Journal ofPalliative Care (EJPC) 16.6

7. Palliative care deliveryThis chapter focuses on the way in whichpalliative care is provided in the community.Basic assumptions and general requirements forpalliative care services will be outlined.Thereafter, in Chapter 8, different types ofservices will be presented with the specificrequirements for each service type.

The following basic requirements are highlyrelevant for the provision of palliative care:l Advance care planningl Continuity of carel Availability of carel Preferred place of care.

7.1 Advance care planningIdeally, the patient, family and palliative careteam discuss the planning and delivery ofpalliative care, taking into account the patient’spreferences, resources and best medical advice.Changes in the patient’s condition orperformance status will lead to changes in thetreatment regimen, and continuous discussionand adaptation will forge an individual plan ofcare throughout the disease trajectory.

However, with the progression of disease anddeterioration of cognitive and physicalfunction, some patients’ decision-makingcapacity will be reduced and they may not beable to participate in decision-making anymore. Palliative care should integrate means foradvance care planning, so that these patients

can receive palliative care according to theirpreferences, if they wish.

Advance directives allow patients to retaintheir personal autonomy and provideinstructions for care in case the patientsbecome incapacitated and cannot makedecisions any more.1

The legal standing of advance directivesdiffers between the European countries. Only afew countries have authorised these documentsby state laws.

There has been an ongoing discussion onhow binding advance directives should be.Patients’ preferences may change with theprogression of the disease, and it is not alwaysclear whether patients have been informedadequately or have understood thatinformation. Advance directives, therefore, maynot be relevant any more, or may never havebeen meant for the situation at hand.

Advance directives may be supplementedwith, or substituted by, a healthcare proxy (ordurable power of attorney). This documentallows the patient to designate a surrogate, aperson who will make treatment decisions forthe patient if the patient becomes tooincapacitated to make such decisions.1

Adequate use of a surrogate decision-maker aswell as of an advance directive requires that thepatient and proxy have discussed the patient’spreferences in recognition of the specificdisease and have had adequate informationfrom the palliative care team on the projecteddisease trajectory. In some European countries,the legal basis for this is not yet established.

White Paper on standards and norms for hospice andpalliative care in Europe: part 2Recommendations from the European Association for Palliative Care

In part 2 of this official position paper of the European Association for Palliative Care

(EAPC), Lukas Radbruch, Sheila Payne and the EAPC Board of Directors outline general

requirements for palliative care services and the specific requirements for each service type


EAPC update

7.2 Access to services Services should be available to all patients,wherever and whenever they require them,without delay.2,3

Palliative care teams should work towardsequitable access to palliative care across all agesand patient populations, all diagnosticcategories, all healthcare settings (includingrural communities) and regardless of race,ethnicity, sexual preference or ability to pay.4

Equity of access to palliative care should beguaranteed in all European countries,assuring provision of palliative care accordingto needs and regardless of cultural, ethnic orother background.

There should be equal access to services forpatients with equivalent needs. The accessshould not depend on the ability to pay.3

Access to high-quality palliative care should not depend on the ability of patientsor carers to pay.

7.3 Continuity of careContinuity of care throughout the diseasetrajectory and across the different settings inthe healthcare system is a basic requirementof palliative care.4

This applies to continuity of care throughoutthe illness trajectory as well as across settings.Continuity of care will help to avoid errors andneedless suffering of patients with a life-threatening illness; it can prevent patient andfamily from feeling abandoned, and ensure thatpatient choices and preferences are respected.

Palliative care is integral to all healthcaredelivery system settings (hospital, emergencydepartment, nursing home, home care, assistedliving facility, outpatient service, and non-traditional environments such as schools andprisons). The palliative care team collaborateswith professional and informal carers in each ofthese settings to ensure co-ordination,communication, and continuity of palliativecare across institutional and home-care settings.Preventing crises and unnecessary transfers isan important outcome of palliative care.4

7.4 Preferred place of careMost patients want to be cared for in their own homes, if possible until the time of death. In contrast to this, the place of death for most patients is the hospital ornursing home.

A growing body of evidence from bothpopulation and patient surveys shows that the

majority of cancer patients would prefer to diein their own home. Studies have found thataround 75% of respondents desire to experiencetheir last phase of their life at home.5 However,this is linked to the presence of a strong socialand family network; the percentage of younger,single or widowed patients preferring to die athome seems to be well below that percentage.

Nonetheless, in contrast to patients’preferences, in Europe, the place of death ismost often the hospital or nursing home. In areview on the state of palliative care inGermany, the place of death was reported withconsiderable variation depending on thedifferent authors’ approaches, but dying ininstitutions was summarised with a frequencyof 60–95%. Based on different studies withvarying percentages, the authors report thefollowing estimations with respect to the placeof death in Germany: hospital 42–43%, home25–30%, nursing or residential home 15–25%,hospice 1–2%, other 3–7%).6

Many patients are able to spend most of thefinal year of life at home, but are then admittedto the hospital to die. The fact that many dyingpeople are admitted to hospital for terminalcare because of inadequate support in thecommunity has been criticised.3

The preferred place of care and place ofdeath should be acknowledged and discussedwith the patient and family, and measurestaken to comply with these preferences,wherever possible.7

It is important to recognise, however, that theplace of death may be determined by factorsother than patient preference. In the final stageof the disease, the medical condition maydeteriorate to the extent that it may necessitateadmission to hospital or specialist inpatient unitfor intensive medical and nursing care, whichcould not be provided in the home-care setting.

7.5 Locations of carePalliative treatment, care and support are provided at home, in nursing homes, in residential homes for the elderly, inhospitals and in hospices, or in other settings if required.2

It is currently recognised that palliative carein the community should be provided along a‘continuum of specialisation’.8 It is supposed toreach from primary healthcare to serviceswhose core activity is limited to the provision ofpalliative care. Palliative care can be provided asa palliative care approach or general palliative


EAPC update

care in non-specialist services as well as inspecialist palliative care services.2

Non-specialist palliative care services are:l District nursing servicesl General practitionersl Ambulant nursing servicesl General hospital unitsl Nursing homes.

Specialist palliative care services are:l Inpatient palliative care unitsl Inpatient hospicesl Hospital palliative care support teamsl Home palliative care teamsl Community hospice teamsl Day hospicesl ‘Hospitals at home’l Outpatient clinics.

Now, as in the future, a major part ofpalliative care will be provided by non-specialist services. Consequently, non-specialistprofessionals must have easy access tospecialist consultation for advice and support.

Non-specialist services need specific guidanceto implement a palliative care approach orprovide general palliative care. Integrated carepathways are useful to facilitateimplementation.9 The Liverpool Care Pathwayfor the Dying Patient (LCP) has been named, inthe UK’s National Institute for Health andClinical Excellence (NICE) guidance forsupportive and palliative care,7 as a mechanismto identify and address the particular needs ofpatients dying from cancer.

Integrated care pathways, such as theLiverpool Care Pathway for the Dying Patient,are recommended as an educational andquality assurance instrument to improve careof dying patients in settings that are notspecialised in palliative care.

In some non-specialist services (for example,radiology, radiotherapy or surgery), limitedresources may lead to the implementation ofwaiting lists. These waiting lists are particularlydisadvantageous for palliative care patientsbecause of the limited remaining life-span inwhich they could benefit from the service.Therefore, fast-tracking pathways have beensuggested to give priority access to palliativecare patients.2

Considering the reduced life expectancy ofpalliative care patients, fast-tracking carepathways should be implemented in medicalservices, ensuring adequate priority for thesepatients, to prevent disproportional burdenfrom lost time.

The provision of specialist palliative careshould be structured in a way that permitspatients to change from one service to another according to clinical needs or personal preferences. This implies that specialist palliative care services are not isolatedentities and that co-ordination of services is essential.

A comprehensive system of services,including inpatient services, home-careservices and support services, should be available to cover all care needs andtreatment options.10

In a graded system of palliative care services(as shown in Table 1), the different needs ofpatients and carers can be matched with themost suitable service.10 With such a system, theright patients can be treated at the right time inthe right place.

7.6 Palliative care networksRegional networks integrating a broadspectrum of institutions and services, andeffective co-ordination, will improve access topalliative care and increase quality as well ascontinuity of care.

Relevant experts’ reports on quality palliativecare argue that the specialist palliative careinpatient unit should be the centre of a regionalpalliative care network.2,3

There should be at least one specialistpalliative care inpatient unit within eachhealthcare service area.

The specialist palliative care inpatient unitshould be the core element of the specialistpalliative care service. Specialist palliative careservices in all other settings, including generalhospitals and the community, should be basedin, or have formal links with, the specialistpalliative care inpatient unit.3 This connectionnot only warrants support and continuingeducation of the teams, but also improvescontinuity in patient care.2

In its recommendations, the Council ofEurope states that the quality of care in a certainregion does not depend only on the quality ofthe single institutions and services, but also onthe co-ordination of specialist services and theco-ordination between specialist services andprimary care services.2 If the services areorganised within a coherent regional network,this will improve access to palliative care andincrease quality as well as continuity ofcare.9,11–13 If such a network is to function well,two conditions have to be fulfilled: an effective

Considering the reduced life expectancyof palliativecare patients,fast-trackingcare pathwaysshould beimplemented in medicalservices


EAPC update

co-ordination and a broad spectrum ofinstitutions and services.

Effective co-ordination is best achievedthrough a case manager (case co-ordinator, keyworker) who can provide transfer ofinformation and continuity of care acrossdifferent settings.5 An effective co-ordination ofservices will allow a higher proportion of peopleto die at home if they so wish. To be effective,these co-ordination services must be available24 hours a day, seven days a week.

Co-ordination can be accomplished by ateam or a person. Case management and co-ordination can be performed by aninterdisciplinary expert group representingthe various services within the network, or bya palliative care unit or an inpatient hospice.

The spectrum of services is supposed to coverall the different levels of care needed by thepatients (see Table 1).10 Additionally, liaisonservices are strongly recommended (supportservices in hospitals as well as ambulantpalliative care services).

A palliative care network has several tasks.Apart from the co-ordination of care, thecomponents of a smoothly functioningnetwork are:l Consensual definition of goals and quality

standardsl Uniform criteria for admission and discharge

at all levels of carel Use of common evaluation methodsl Implementation of common therapeutic

strategies based on available evidence.Beyond the provision of care, the network

should evaluate its own efficiency, for exampleusing audit methods, and should organise andsupervise education and research activities.14

7.7 Staff in specialist palliative care services Services that are not specialised in palliativecare can use a palliative care approach or

deliver basic palliative care, even when thiscan only be done by one professionalcategory, or even by one individual (forexample, a general practitioner workingalone), if they have access to support from aninterdisciplinary team.

Palliative care is most effectively delivered byan interdisciplinary team of healthcareprofessionals who are both knowledgeable andskilled in all aspects of the caring process relatedto their discipline of practice.15 However, in thenon-specialised setting, multidisciplinary teamwork is the exception rather than the rule. Careshould be taken that non-specialised servicesmaintain adequate communication links withspecialist facilities.

Specialist palliative care service deliveryrequires a multiprofessional team with aninterdisciplinary work style.

The Council of Europe2 and the NationalAdvisory Committee on Palliative Care3 list staffrequirements for specialist palliative careservices. According to these, the followingprofessionals – in addition to nurses andphysicians – should be available full-time, part-time or at regular times: l Social workersl Professionals skilled in psychosocial supportl Adequate numbers of office workers,

administration secretaries and generalassistants

l Physiotherapistsl Professionals skilled in bereavement supportl Coordinators for spiritual carel Co-ordinators for voluntary workersl Chaplainsl Wound management specialistsl Lymphoedema specialistsl Occupational therapistsl Speech therapistsl Dietitiansl Pharmacists

Table 1. Graded system of palliative care services*

Palliative care

Palliative care Specialist support Specialist approach for general palliative care palliative care

Acute care Hospital

Long-term care Nursing home, residential home

Home care General practitioners,community nursing teams

*Adapted from: Nemeth and Rottenhofer10

Hospital palliative care support teams Palliative care unit

Volunteer hospice Inpatient hospiceservice Home palliative care teams Home palliative

care teams, day-care centre


EAPC update

l Complementary therapistsl Trainers/instructorsl Librarians.

The core palliative care team should consist of nurses and physicians with special training as a minimum, supplemented by psychologists, social workers and physiotherapists if possible.Other professionals can be members of the core team, but more frequently will work in liaison.

Differences between European countries,regions and settings have to be considered inthe balance between core team and extendedteam. For example, in some countries,psychologists are regarded as essential membersof the core team, whereas, in other countries,this profession does not have relevance for theclinical work with patients and their families.

Children need specialised services that areto be provided by paediatrically skilled staff.This applies especially to the paediatricpalliative care nursing service. Palliative homecare for the support of children and theirfamilies should be available.2

7.8 Voluntary workSpecialist palliative care services shouldinclude volunteers or collaborate withvolunteer services.

Volunteers provide an indispensablecontribution to palliative care. The hospicemovement, as a civil rights movement, is basedon volunteer work. The Council of Europepoints out the importance of voluntary work forthe provision of quality palliative care in thecommunity.2 To adequately fulfil the role of apartner in the palliative care network, severalprerequisites have to be met: l Voluntary workers have to be trained,

supervised and recognised by an associationl Training is indispensable and demands a

diligent selection of voluntary workersl Voluntary workers act within a team under

the responsibility of a co-ordinatorl The co-ordinator is the link between the

voluntary workers and the carers, betweenthe hospital and the association

l In the interdisciplinary team, voluntaryworkers do not substitute for any staffmember, but supplement the work of the team. For more detailed staff requirements for

different palliative care services, see Chapter 8(‘Palliative care services’).

7.9 Palliative care leaveLegal regulations for palliative care leave forcarers are available only in Austria and France.Similar regulations should be introduced inother European countries to enable familymembers to provide care for their relatives athome for as long as required.

Leave of absence from work for people whohave to care for seriously ill or dying spouses,parents, children or other close relatives wouldallow many patients to remain in their homeuntil the time of death. However, legalregulations for palliative care leave exist in onlytwo European countries. Introduction of similarlegislation in other countries would be a majorstep in the development of palliative care. Legal recognition of reimbursement claims for palliative care leave would further reducethe burden of care for family members andother carers.

8. Palliative care servicesIn this section, guidelines are provided on theminimum resources required to meet thepopulation’s needs for palliative care in acommunity. The different kinds of services arepresented according to the followingcharacteristics:l Definition and purpose of the servicel Demand in the communityl Requirements (staff and spatial

requirements).

8.1 Palliative care unit8.1.1 Definition and purposePalliative care units (PCUs) provide specialistinpatient care. A palliative care unit is adepartment specialised in the treatment andcare of palliative care patients. It is usually award within, or adjacent to, a hospital, but itcan also exist as a stand-alone service. In somecountries, palliative care units will be regularunits of hospitals, providing crisisintervention for patients with complexsymptoms and problems; in other countries,PCUs can also be freestanding institutions,providing end-of-life care for patients where home care is no longer possible. The aim of palliative care units is to alleviatedisease- and therapy-related discomfort and, if possible, to stabilise the functional status ofthe patient and offer patient and carerspsychological and social support in a way thatallows for discharge or transfer to anothercare setting.

Specialistpalliative careservices shouldincludevolunteers orcollaboratewith volunteerservices


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PCUs admit patients whose medicalcondition (physical, psychological, social andspiritual) necessitates specialistmultiprofessional palliative care.2 Patients canbe admitted to these units for specialist care fora few days or for a number of weeks; medical,nursing, psychosocial or spiritual problems candetermine the priority.

These units may also provide day hospicefacilities, home care, support for appropriatepatients cared for in care homes, andbereavement support, together with adviceservices and education.16

Essential services should be available 24 hours per day and seven days per week.15 Ifpossible, there should be 24-hour telephoneadvice for healthcare professionals and 24-hourtelephone support service for knownoutpatients and their carers.

PCUs are supposed to collaborate withvarious services in the ambulant and inpatientsector.2 They work in a network with medicalcentres, hospital units, general practitioners,ambulant nursing services and hospice services,as well as other appropriate services.6

8.1.2 DemandIt is estimated that 50 palliative care beds areneeded for 1,000,000 inhabitants. With anoptimal size of 8-12 beds per unit, this wouldcorrespond to five PCUs per millioninhabitants. Recent estimations haveupgraded the number of palliative care andhospice beds needed to 80–100 beds per1,000,000 inhabitants.

Until recently, the need for palliative carebeds for cancer patients was estimated to be 50beds for one million inhabitants. However, thisrate does not take into account the needs ofnon-cancer patients, nor does it consider therising prevalence of chronic diseases resultingfrom the European population growing older.2

The actual need probably amounts to twice thenumber of beds.

Generally speaking, the respective number ofpalliative care beds needed in a certain regionwill depend on the region’s demographic andsocioeconomic development and on theavailability of other specialist palliative careservices, providing, for example, respite care orhome care. For Austria, 60 beds for one millioninhabitants have been recommended,distributed according to the regionalconditions.10 For Ireland, the Report on the National Advisory Committee on Palliative

Care recommends that at least 80–100 palliativecare beds for one million inhabitants should be available.3

The EAPC Atlas of Palliative Care in Europesheds light on the existing number of palliativecare beds in different European countries.17 Thenumber of palliative care beds in WesternEurope was estimated to range from 10–20 bedsper million inhabitants (Portugal, Turkey) to50–75 beds per million inhabitants (Sweden,UK, Iceland, Luxembourg). Consequently, thenumber of beds has to be increased even inmany Western European countries – and thesituation in most Eastern European countries is even worse.

8.1.3 RequirementsPCUs require a highly qualified,multidisciplinary team.2 Staff members inpalliative care units are supposed to havespecialist training. The core team consists ofdoctors and nurses. The extended teamcomprises relevant associated professionals,such as psychologists, physiotherapists, socialworkers or chaplains.

A central feature of PCUs is amultiprofessional team with specially trainedmembers from different healthcare professions,completed by voluntary workers.6

The core team consists of doctors and nursesas a minimum and comprises dedicated inputfrom psychologists, social workers,physiotherapists and spiritual care workers. Inaddition, there should be ready access to otherprofessionals. All staff members of the coreteam are supposed to have specialist training inpalliative care accredited by the nationalprofessional boards.

Medical staff should include consultants with special knowledge and skills in palliativemedicine. Nurses are supposed to have post-basic professional training in palliativecare. Voluntary workers should haveparticipated in a course of instruction forvoluntary hospice workers.10

PCUs require a dedicated core team ofnurses and physicians. PCU nursing staffshould encompass a ratio of at least one nurseper bed, and preferably 1.2 nurses per bed.PCUs require physicians with special training,with a ratio of at least 0.15 physicians per bed.

In a setting where children are being caredfor, there should be at least one nurse on eachshift with a special paediatric qualification.

A number of recommendations are made on

Recentestimationshave upgradedthe number ofpalliative careand hospicebeds needed to80–100 bedsper 1,000,000inhabitants


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the staffing level of specialist palliative carenurses working in different care settings. Thereshould be no less than one full-time specialistpalliative care nurse for each bed.3 It isrecommended that there should be at least onewhole time physician specialised in palliativemedicine for every five to six beds.

PCUs require an extended team of relevantassociated professionals, such as psychologists,social workers, spiritual care workers orphysiotherapists. These professions should beincluded in the team or work in close liaisonwith it. There should be dedicated input fromthese professionals, or at least ready access tothem should be warranted.

National reports on norms for palliative carestaff agree that relevant professions to beincluded in a PCU’s extended team are: speechand language therapists, psychologists,chaplains, occupational therapists, clinicalnutritionists, pharmacists, physiotherapists,wound management specialists, lymphoedemaspecialists, speech and language therapists,social workers, bereavement specialists, andpsychologists. Moreover, there should bevoluntary workers available with a professionalvolunteer co-ordinator.

Palliative care units should offer a homelikeatmosphere with quiet and private areas. Theyshould be separate areas with a capacity of8–15 beds. The units should be equipped withsingle or double patient rooms, facilities forrelatives to stay overnight and rooms for socialactivities, such as kitchens or living rooms.

The patient areas should be accessible forpeople with disabilities. Every room shouldhave a bathroom. In the unit, one room forviewing the deceased, taking leave from themand meditating, as well as for multifunctionaluse, should be available. Access to a chapel orprayer room (multi-faith room) is desirable.

The setting of care should be arranged so thatit conveys safety and comfort and providesample opportunity for privacy and intimacy.15

Where possible, care settings should behomelike, with access to the outdoors.

8.2 Inpatient hospice 8.2.1 Definition and purposeAn inpatient hospice admits patients in theirlast phase of life, when treatment in a hospitalis not necessary and care at home or in anursing home is not possible.

The central aims of an inpatient hospice arethe alleviation of symptoms and achievement

of the best possible quality of life until death, aswell as bereavement support.10

In many countries, the function of aninpatient hospice is similar to that of a PCU,whereas, in other countries, a clear distinctioncan be observed.

In Germany, for example, patients will beadmitted to a PCU for crisis intervention and toan inpatient hospice for end-of-life care. Insome countries, a hospice, in contrast to a PCU,is a free-standing service with end-of-life care asits main focus of work.

8.2.2 RequirementsAn inpatient hospice requires amultiprofessional team that cares for patientsand their relatives using a holistic approach.Nursing staff should encompass at least one,preferably 1.2 nurses per bed. A physiciantrained in palliative care should be available24 hours a day. There should be dedicatedinput from psychosocial and spiritual careworkers as well as voluntary workers.

The core team of an inpatient hospiceconsists of nurses and requires ready access to a trained physician. The extended teamcomprises social workers, psychologists,spiritual carers, physiotherapists, dietitians, speech and language therapists and occupational therapists, as well asvoluntary workers.10

An inpatient hospice requires a homelikeatmosphere with access for people withdisabilities, single or double patient roomsand a capacity of at least eight beds. Thehospice should be equipped with rooms forsocial and therapeutic activities.

The inpatient hospice is supposed to be anautonomous organisational unit with its ownteam and at least eight beds.10 The patientrooms should be equipped with a bathroom.Facilities for overnight stay of relatives shouldbe provided.

8.3 Hospital palliative care support team8.3.1 Definition and purposeHospital palliative care support teams providespecialist palliative care advice and support toother clinical staff, patients and their familiesand carers in the hospital environment. They offer formal and informal education,and liaise with other services in and out of the hospital.

Hospital palliative care support teams are alsoknown as hospital supportive care teams or

An inpatienthospicerequires a multi-professionalteam that caresfor patientsand theirrelatives usinga holisticapproach


EAPC update

hospital mobile teams.17 Hospital palliative caresupport teams, in the first instance, offersupport to healthcare professionals in hospitalunits and polyclinics not specialised inpalliative care.10

One central aim of a hospital palliative care support team is the alleviation ofmultiple symptoms of palliative care patients on different hospital wards bymentoring the attending staff and bysupporting the patients and their relatives.Furthermore, expertise in palliative medicineand palliative care shall be made available inthe respective environments.

Support and education is offered on paintherapy, symptom control, holistic care andpsychosocial support. This involves attending topatients on a variety of different wards andproviding advice to other clinicians. However,decisions on, and implementation of, therapiesand interventions remain the responsibility ofthe attending medical staff. The hospitalpalliative care support team contributes at therequest of medical and nursing staff, theadmitted patient and his relatives.2 The team issupposed to act in close collaboration withother specialists.

The aims of a hospital palliative caresupport team are the improvement of care tofoster discharge from an acute hospital unitand the facilitation of the transfer betweeninpatient and outpatient care.

Measures taken by the team can be a well-directed transfer of patients to palliative careunits or co-ordination between inpatient andoutpatient care. Close co-operation with otherservices and the contribution to a sustainablepalliative care network is an important functionof a hospital palliative care support team.Within this context, additional tasks can be theprovision of a hotline to give advice to medicaland nursing staff on difficult palliativequestions, or of regional education and trainingin selected topics of palliative care.6

8.3.2 DemandA hospital palliative care support team shouldbe affiliated to every PCU and should beavailable for every hospital in case of need.There should be at least one team available fora hospital with 250 beds.

It would be desirable to have a hospitalpalliative care support team associated withevery PCU. In case of need, such a team shouldbe available for every hospital.10 However, in the

majority of European countries, this model ofsupport and care delivery is still very poorlyrepresented.17 Countries with a high proportionof hospital palliative care support teams areBelgium, France, Ireland and the UK. In most ofthe other European countries, a considerabledearth can be observed in the availability ofthese teams.

8.3.3 RequirementsA hospital palliative care support team iscomposed of a multiprofessional team with atleast one physician and one nurse withspecialist palliative care training.

The core team should include dedicatedinput from doctors and nurses.10,16 Medical andnursing staff are supposed to have specialisttraining accredited by the national professionalboards. The team should have ready access toother professionals working in liaison with it,including bereavement specialists, chaplains,dietitians, therapists, oncologists, pharmacists,physiotherapists, psychiatrists, psychologists,social workers and speech and languagetherapists. All clinical staff should be supportedby administrative staff. Staff support such assupervision should be available for the team.

A hospital palliative care support teamshould have a room for staff meetings andadministrative support at its disposal.

8.4 Home palliative care team 8.4.1 Definition and purposeHome palliative care teams provide specialisedpalliative care to patients who need it at homeand support to their families and carers at thepatient’s home. They also provide specialistadvice to general practitioners, family doctorsand nurses caring for the patient at home.

The home palliative care team is amultiprofessional team that, in the first place,supports people at home or in a nursing home(for example, relatives, medical staff, nurses,physiotherapists). It offers support with agraded approach. Most often, the homepalliative care team has an advisory andmentoring function, and offers its expertise inpain therapy, symptom control, palliative careand psychosocial support. Advice and supportby the home palliative care team can also beprovided directly to the patient. Less frequently,the home palliative care team may provide‘hands-on’, direct care in collaboration with thegeneral practitioner and other primary careworkers. In selected cases with highly complex

One central aimof a hospitalpalliative caresupport team isthe alleviationof multiplesymptoms ofpalliative carepatients ondifferenthospital wards


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symptoms and problems, the home palliativecare team may take over treatment from thegeneral practitioner and the nursing service,and provide holistic palliative care. The mode ofaction also depends on the local model of caredelivery and the level of involvement of primarycarers. The home palliative care team also assiststhe transfer between hospital and home.10

8.4.2 DemandThere should be one home palliative careteam available for 100,000 inhabitants. Theteam should be accessible 24 hours a day.10

Home palliative care teams have to beavailable seven days a week and 24 hours a day.6

According to the EAPC Atlas of Palliative Carein Europe, the UK, Poland and Sweden have ahigh proportion of home-care services, with aratio of approximately one service for 160,000to 180,000 inhabitants.17 Italy and Spain alsoshow a noteworthy number of home-careservices, with a ratio of approximately oneservice for 310,000 to 380,000 inhabitants.However, in other European countries, thenumber of home-care services is much smaller.In some regions, there is hardly any palliativehome care available at all (for example, inGermany, there are 30 services in total for apopulation of more than 80,000,000).

In rural areas, home-care services have tocover a greater catchment area in order to workcost-effectively.18 Therefore, regional networkshave to be developed in order to provideambulant palliative care in rural areas with poorinfrastructure.

8.4.3 RequirementsThe core team of a home palliative care teamconsists of four to five full-time professionalsand comprises physicians and nurses withspecialist training, a social worker andadministrative staff.

The core team of a home palliative care teamshould consist of professionals with specialisttraining in palliative care accredited by thenational professional boards.10

In some home palliative care teams, day-to-day care for patients and carers is provided bystaff members without specialist training, withpalliative care consultants and nursesspecialised in palliative care available forguidance and supervision.7

In addition, there should be easy access toother professionals such as physiotherapists,psychologists, occupational therapists, speech

therapists, dietitians, spiritual care workers andvoluntary workers.

The home palliative care team works in close collaboration with otherprofessionals so that the full range ofmultiprofessional team work can be realised in the home-care setting.

In some countries, multiprofessional teamsare not available and palliative care at home isdelivered by specialist palliative nursing servicesand by specialist physicians working in generalpractice or in home-care support services.

Palliative care at home requires closecollaboration of other professional services,such as specialised nursing services andgeneral practitioners with specialist training, including (but not restricted to)regular meetings at the patient’s bedside (and other tasks).

The home palliative care team requires aworking room at its disposition for nurses,physicians and social workers, as well as ameeting room and a depot for medical aids.

8.5 ‘Hospital at home’The ‘hospital at home’ provides intensivehospital-like care for the patient at home.

In some European countries, for exampleFrance or Finland, the ‘hospital at home’ offersan intensive medical and nursing service thatallows patients who would otherwise beadmitted to a hospital to stay at home. Thisimplies a type of care that is much more similarto inpatient hospital treatment than to theusual home care. Different organisationalmodels can be found, ranging from anexpansion of existing resources within thehome environment to the allocation of aspecialist team that can cover all demands.2

8.6 Volunteer hospice team8.6.1 Definition and purposeA volunteer hospice team offers support andbefriending to palliative care patients andtheir families in times of disease, pain, griefand bereavement. The volunteer hospice teamis part of a comprehensive support networkand collaborates closely with otherprofessional services in palliative care.

Volunteer hospice teams are vital incontributing to the psychosocial and emotionalsupport of patients, relatives and professionals,and foster the maintenance and improvementof patients’ and carers’ quality of life. Thesupport persists beyond the patient’s death and

There shouldbe one homepalliative careteam availablefor 100,000inhabitants


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continues in the phase of bereavement.10

Volunteer hospice teams do not only provide anindispensable dimension of palliative care topatients and families, but also act as advocatesof palliative care to the general public. In somecountries, volunteers contribute to fund-raising,reception and administration duties, and thegovernance of hospices as trustees.

8.6.2 DemandThere should be one volunteer hospice teamavailable for 40,000 inhabitants.10

However, during the Delphi procedure (seepart 1 of this article in the EJPC 16.6), theconsensus regarding this statement was not asgreat as it was for other statements. The demandfor volunteer hospice teams may vary accordingto the role of volunteers in the national andlocal settings. In certain regions, one volunteerhospice team for up to 80,000 inhabitants maybe sufficient.

8.6.3 RequirementsThe volunteer hospice team comprisesspecially trained voluntary hospice workerswith at least one professional co-ordinator.

A volunteer hospice team consists of at leastten to 12 voluntary hospice workers and onededicated professional co-ordinator. The co-ordinator should have an education in thesocial care and/or the healthcare sector, withadditional specialist training in palliative care.The voluntary workers should have participatedin an accredited instruction course and takepart in regular supervision and self-reflection, aswell as in continuing education.10 The requiredqualification of volunteer workers and their co-ordinators depends on their tasks in palliativecare. Volunteers in administrative or otherfunctions require a different type of training.

8.7 Day hospice8.7.1 Definition and purposeDay hospices or day-care centres are spaces inhospitals, hospices, PCUs or the communityespecially designed to promote recreationaland therapeutic activities among palliativecare patients.

Patients usually spend part of the day in theday-care centre, either each day or once weekly.Day hospices focus on creative living and socialcare, offering patients the opportunity toparticipate in various activities during thedaytime outside their familiar surroundings.Formal medical consultations are not usually

part of routine day care, but, in some day-carecentres, patients may have some treatments,such as a blood transfusion or a course ofchemotherapy, while at the centre.

Central aims are social and therapeutic care,to avoid social isolation as well as to relieve theburden of care on relatives and carers.

8.7.2 DemandUntil now, day-care centres have been acharacteristic feature of hospice and palliativecare development in the UK, with a reportedtotal of more than 200 services, but are onlysparsely available in other European countries.19

In consequence, a clear estimation of the needfor day-care centres in European countries is lacking. However, a mid-range prediction of the demand for palliative care services has recommended a catchment area of 150,000inhabitants for one day-care centre. Because of the lack of evidence, pilot projects arestrongly suggested.10

It must be noted that, in many countries, day-care centres are not regarded as an essentialservice and other models of palliative caredelivery are offered.

There should be a day hospice available for150,000 inhabitants.10 National pilot projectsshould be established and evaluated toinvestigate the need for this type of service.

8.7.3 RequirementsA day-care centre is staffed by amultiprofessional team supplemented byvoluntary workers. It is recommended thatthere are two nurses present during openinghours, with at least one specialist palliativecare nurse for every seven daily attendees. Aqualified physician should be directlyaccessible in case of need. Ready access toother professionals, such as physiotherapists,social workers or spiritual care workers,should be obtained.3,10

A day-care centre is supposed to havepatient rooms, a therapy room, staff rooms, abathroom, a kitchen and a recreation room.All rooms should have access for people withdisabilities.

A day-care centre should provide a homelikeatmosphere. Patient rooms should be equippedcomfortably and suitable for multifunctionaluse. The centre is an autonomousorganisational unit with at least six places andmay be associated with an inpatient hospice orpalliative care unit.

Day hospices orday-carecentres arespaces inhospitals,hospices,palliative careunits or thecommunityespeciallydesigned topromoterecreationaland therapeuticactivities

8.8 Palliative outpatient clinicPalliative outpatient clinics offer consultationfor patients living at home who are able tovisit the clinic.

Palliative outpatient clinics are an importantcomponent of a community palliative careprogramme. Usually, they are affiliated tospecialist PCUs or inpatient hospices. Patientswith progressive disease and reducedperformance status will often no longer be ableto visit the outpatient clinic. Therefore,outpatient clinics should be integrated inregional networks, in order to consult withinpatient services, home palliative care team orthe primary care team.

9. Discussion and future prospectsAfter a pioneering stage of about four decades,palliative care is still quite a young discipline,and consensus-building processes are a recentdevelopment. Ferris et al, in their publicationon the US-based model to guide patient andfamily care, state that the ‘grassroots movement developed where there werechampions’.15 Approaches to care were usuallybased on individual opinion. Considerablevariability in the services offered by individualprogrammes as well as inconsistent access tocare could be observed.

In their recent publication on the results ofthe EAPC Task Force on the Development ofPalliative Care in Europe, Carlos Centeno andcolleagues pointed to the following problems inthe evaluation of palliative care services:19

l Different types of services in differentcountries

l Lack of unified standards and universallyaccepted definitions of each type of availableresource

l Different interpretations of what isconsidered to be a ‘specialist palliative careresource’.Commenting on this publication, von

Gunten stated that this inconsistency ‘bedevilsconversation, comparisons and progress’.20 Hestrongly pleaded for a European consensus andpointed to Canada and the USA, which have seta good example.

The need for professional consensus on whatconstitutes high-quality palliative care is aprerequisite to the effective delivery of suchservices across the continuum of care.Disseminating and advocating these standardsand norms recommended by the EAPC todecision-makers and other stakeholders will

support public awareness about hospice andpalliative care in Europe.4

The World Health Organization (WHO)strongly advises policy-makers to ensure thatpalliative care is integral to the work of allhealthcare services and is not seen as just an‘add-on extra’.5 This is in line with therecommendations of the Council of Europe toits member states that palliative care is anindispensable and integral part of healthcare.Therefore, national healthcare strategies shouldcontain measures for the development andfunctional integration of palliative care.2 Healthorganisations must be rewarded for improvingquality. Partnerships should be establishedbetween geriatric medical teams, nursinghomes and palliative care staff.

The EAPC supports the recommendations ofthe WHO to policy- and decision-makers, whichare the following:5

l Recognise the public health implications ofaging populations

l Undertake a quality audit of palliative careservices

l Invest in the development of core data setsl Invest in audit and quality improvement

methods/reward the involvement of healthorganisations

l Ensure that multidisciplinary services areadequately funded, rewarded and supported

l Ensure that the training of healthcareprofessionals includes sufficient time devotedto palliative medicine and that professionalsare supported to keep up to date

l Act against stereotypes that mean olderpeople are not offered palliative care whenthey need it.The focus of this White Paper is on norms

and standards for hospice and palliative care in Europe as recommended by the EAPC. The content has been restricted to those issues directly related to the distribution ofservices in the community as well as thematerial, staffing and personal equipment ofthese services.

As a matter of course, in addition to thestructure of care, other dimensions play animportant role in the provision of qualityhospice and palliative care – such as treatmentmethods, quality and outcome measurement,research, education, funding, policy andorganisation, and legislation. It is beyond thescope of this White Paper to cover those areas indetail. Relevant topics will be examined in moredepth in a series of future papers.


EAPC update

EUROPEAN JOURNAL OF PALLIATIVE CARE, 2010; 17(1)

The bold type in this text highlights the recommendationsmade by the EAPC. Part 1 of this EAPC White Paper waspublished in the EJPC 16.6.

Acknowledgements The research work was supported by an unrestricted grant from theDepartment of Palliative Medicine of the RWTH Aachen University(Germany). The manuscript was prepared by Saskia Jünger. We wouldlike to thank the experts who invested time and effort to review themanuscript: Franco De Conno, Carl-Johan Fürst, Geoffrey Hanks, IreneHigginson, Stein Kaasa, Phil Larkin and Friedemann Nauck.We wouldalso like to thank the Boards of Directors of the national associationsfor their dedicated participation in the Delphi procedure. Withouttheir engagement and support, it would not have been possible todevelop these recommendations so rapidly.

References1. Kaas-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning:preferences for care at the end of life. Rockville: US Department of Health and Human Service, Agency for Healthcare Research andQuality, 2003.2. Council of Europe. Recommendation Rec (2003) 24 of the Committee ofMinisters to member states on the organisation of palliative care, 2003.www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf (last accessed21/10/2009)3. Mid-Western Health Board. Report on the National AdvisoryCommittee on Palliative Care. Department of Health and Children; 2001. http://hdl.handle.net/10147/43031 (last accessed21/10/2009) 4. National Consensus Project for Quality Palliative Care. ClinicalPractice Guidelines for Quality Palliative Care, 2004. 5. Davies E, Higginson IJ (eds). Better Palliative Care for Older People.Copenhagen: World Health Organization Regional Office for Europe, 2004.6. Jaspers B, Schindler T. Stand der Palliativmedizin und Hospizarbeit inDeutschland und im Vergleich zu ausgewählten Staaten (Belgien,Frankreich, Großbritannien, Niederlande, Norwegen, Österreich, Polen,Schweden, Schweiz, Spanien). Berlin: Enquete-Kommission desBundestages ‘Ethik und Recht der modernen Medizin’, 2005.7. National Institute for Health and Clinical Excellence. Improvingsupportive and palliative care for adults with cancer. The manual, 2004.www.nice.org.uk/nicemedia/pdf/csgspmanual.pdf (last accessed21/10/2009)8. Tomlinson S. National Action Planning Workshop on End-of-life Care.Winnipeg: Health Canada Secretariat on Palliative and End-of-life Care,2002. 9. Ellershaw J. Care of the dying: what a difference an LCP makes!Palliat Med 2007; 21: 365–368.10. Nemeth C, Rottenhofer I. Abgestufte Hospiz- und Palliativversorgungin Österreich. Wien: Österreichisches Bundesinstitut fürGesundheitswesen, 2004.11. Elsey B, McIntyre J. Assessing a support and learning network forpalliative care workers in a country area of South Australia. Aust J RuralHealth 1996; 4: 159–164.12. Mitchell G, Price J. Developing palliative care services in regionalareas. The Ipswich Palliative Care Network model. Aust Famy Physician2001; 30: 59–62.13. Schroder C, Seely JF. Pall-Connect: a support network forcommunity physicians. J Palliat Care 1998; 14: 98–101.14. Gómez-Batiste X, Porta-Sales J, Pascual A et al. Palliative CareAdvisory Committee of the Standing Advisory Committee for Socio-Health Affairs, Department of Health, Government of Catalonia.Catalonia WHO palliative care demonstration project at 15 years(2005). J Pain Symptom Manage 2007; 33: 584–590.15. Ferris FD, Balfour HM, Bowen K et al. A model to guide patient andfamily care: based on nationally accepted principles and norms ofpractice. J Pain Symptom Manage 2002; 24: 106–123.16. Clinical Standards Board for Scotland. Clinical standards: specialistpalliative care. Edinburgh, 2002. 17. Centeno C, Clark D, Lynch T et al. EAPC Atlas of Palliative Care inEurope. Houston: IAHPC Press, 2007.18. Radbruch L, Voltz R. Was ist speziell an der spezialisiertenPalliativversorgung? Der Gemeinsame Bundesausschuss legt Beschlüssezur spezialisierten ambulanten Palliativversorgung vor. Der Schmerz2008; 22: 7–8.19. Centeno C, Clark D, Lynch T et al. Facts and indicators on palliativecare development in 52 countries of the WHO European region: resultsof an EAPC task force. Palliat Med 2007; 21: 463–471.20. Von Gunten CF. Humpty-Dumpty Syndrome. Palliat Med 2007; 21:461–462.

Lukas Radbruch, European Association for PalliativeCare (EAPC) President; Sheila Payne, EAPC Vice-President; and the Board of Directors of the EAPC(Michaela Bercovitch, Augusto Caraceni, Tine DeVlieger, Pam Firth, Katalin Hegedus, Maria Nabal,André Rhebergen, Esther Schmidlin, Per Sjøgren, CarolTishelman, Chantal Wood, and Honorary DirectorFranco De Conno)

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