European

Journal of
Cancer
European Journal of Cancer 40 (2004) 2192–2200
www.ejconline.com

Position Paper

A new international framework for palliative care

S.H. Ahmedzai a,*,1, A. Costa b, C. Blengini c, A. Bosch d, J. Sanz-Ortiz e,
V. Ventafridda c, S.C. Verhagen f, on behalf of the international working group
convened by the European School of Oncology 1
a
Academic Palliative Medicine Unit, Clinical Sciences Division, Royal Hallamshire Hospital, The University of Sheffield, Sheffield S10 2JF, UK
b
European School of Oncology, via Ripamonti 66, 20141 Milano, Italy
c
Palliative Care Unit, WHO Collaborating Centre, European Institute of Oncology, via Ripamonti 435, 201412 Milano, Italy
d
Comprehensive Cancer Centre IKP, Hatertseweg 1, 6501 BG Nijmegen, The Netherlands
e
Medical Oncology and Palliative Care Unit, Hospital Universitario Valdecilla, Avda. Valdecilla s/n, 39008 Santander, Spain
f
Department of Medical Oncology, University Hospital Nijmegen, P.O. Box 91201, 6500 HB Nijmegen, The Netherlands
Received 9 December 2003; received in revised form 7 June 2004; accepted 15 June 2004
Available online 15 September 2004

Abstract

In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should
therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental human right.
At present, the implementation of palliative care and patients’ access to it are inconsistent across Europe and many other parts of
the world. The World Health Organisation (WHO) made an important advance in 1986 by first defining palliative care and, then
updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-
professional specialisation in this subject, and to recognise the different models for delivering this type of care.
We recommend that palliative care should be defined as follows:
• Palliative care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited
prognosis, in order to optimise the quality of life of patients and their families or close friends.
Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually
delivered:
• Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or
secondary care, within their normal duties to patients with life-limiting disease.
• Specialised palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team,
who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to pro-
vide specialised educational and practical resources to other non-specialised members of the primary or secondary care teams.
If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred,
and the current healthcare provider has an obligation to refer, to the local palliative care team.
Important priorities to ensure the standardisation of, and uniform access to, palliative care for all cancer patients include:
• Integration of palliative care services with the primary care and oncology teams.
• Establishment of a specialised palliative care service in each major cancer centre.
• Establishment of educational programmes covering palliative care for undergraduates, oncologists, primary care team members
and specialists training in palliative care.
• Support for research using appropriate methodologies to underpin the scientific basis of palliative care.
• Establishment of quality assurance programmes.
• Recognition of palliative medicine as a medical specialty.

*
Corresponding author.
E-mail address: s.ahmedzai@sheffield.ac.uk (S.H. Ahmedzai).
1
Ahmedzai SH, Bernado MR, Boissante C, Bosch A, Costa A, De Conno F, F€ urst CF, Holli K, Kloke M, Lassauniere JM, Miller C, Morch M,
Mystakidou K, O’Brien T, Razavi D, Sanz-Ortiz J, Ventafridda V, Verhagen SC, Wanrooij B, Zielinski C.

0959-8049/$ - see front matter
2004 Published by Elsevier Ltd.

doi:10.1016/j.ejca.2004.06.009
 S.H. Ahmedzai et al. / European Journal of Cancer 40 (2004) 2192–2200 2193

• Establishment of academic centres of excellence with chairs of palliative medicine and palliative care nursing.
• Removal of unnecessary restrictions on all drugs which are proven to be of benefit in symptom control, especially improving
access to strong opioids.
• Improved information for patients and family carers to allow them to make choices and exercise autonomy.

2004 Published by Elsevier Ltd.

Keywords: Palliative care; Framework; Services; Carers; Multi-professional; European School of Oncology

1. Introduction This definition has been extremely important and in-

fluential in raising the awareness of palliative care across
Statistics of cancer incidence and mortality in Europe the world. However, it came to be regarded as somewhat
show that this disease is steadily increasing in signifi- limited and ambiguous, as it rests on the interpretation of
cance, both in terms of mortality and morbidity, in responsiveness to ‘curative’ anti-cancer treatment. The
keeping with the growing proportion of older people. In WHO itself recognised this later: ‘‘The earlier WHO
the developing world, it is expected that there will be an definition of palliative care stressed its relevance to patients
enormous increase in cancer incidence, mortality and not responsive to curative therapy. This statement might be
morbidity [1]. In spite of recent advances in anti-cancer interpreted as relegating palliative care to the last stages of
treatments, most adult cancer patients will still ulti- care.’’[7] With improvements in anti-cancer treatments,
mately die from their disease, or from side-effects of and including less toxic chemotherapy regimens and new
complications arising from its treatments. methods of biological control, patients are living longer
Healthcare professionals are increasingly aware of the with cancer and especially for older people who have
need to change the aim of anti-cancer treatment in se- other significant co-morbidity, the exact definition of
lected patients from ‘curative’ to ‘life-prolonging’ or ‘cure’ is becoming less relevant. Furthermore, in recent
‘palliative’ [2]. However, so-called ‘palliative’ anti-can- years, specialists working in palliative care in some de-
cer treatments given by cancer specialists in cancer units veloped countries have moved away from restricting
may still not cover all of the symptom control, psy- palliative care to incurable disease. The WHO therefore
chosocial and spiritual needs of cancer patients and their introduced an updated definition in 2002, which attempts
families [3]. to address this shift in emphasis:
In most European and other developed countries,
‘Palliative care is an approach that improves the quality of life
healthcare professionals and also the public are be- of patients and their families facing the problems associated
coming more aware of the options for palliative and with life-threatening illness, through the prevention and relief
supportive care in advanced cancer [4,5]. However, in of suffering by means of early identification and impeccable as-
both developed and developing parts of the world, ex- sessment and treatment of pain and other problems, physical,
isting healthcare services, from primary to tertiary care, psychosocial and spiritual.’ [7]
may not be currently equipped (both in terms of This new WHO definition was welcomed as it high-
knowledge and resources) to respond to this growing lights the need to start palliative care earlier in the dis-
need of patients and their families, [1]. ease process. However, in developed countries where
Against this background of change and the public’s there was already many years of experience of delivering
rising expectations of greater autonomy and choices, the palliative care alongside anti-cancer treatments and
availability of palliative care, of uniformly high quality, where specialised teams and services to deliver palliative
has to be made more equitable and accessible, in both care have been developed, the more pressing issue has
developed and developing countries. become – how to ensure that patients receive the benefits
of palliative care at all of the appropriate stages and
acknowledging the different skills of healthcare profes-
sionals who care for them?
2. What do we mean by ‘palliative care’ for cancer?

Palliative care was originally defined by the World

Health Organisation (WHO) in 1986 as:
3. European school of oncology international working
‘‘The active total care of patients whose disease is not respon- group
sive to curative treatment. Control of pain, of other symptoms,
and of psychological, social and spiritual problems is para- To address this issue the European School of On-
mount. The goal of palliative care is achievement of the best
possible quality of life for patients and their families. Many as-
cology (ESO) convened an international working group
pects of palliative care are also applicable earlier in the course of in Milan late 2000. The working group consisted of
the illness, in conjunction with anti-cancer treatment.’’ [6] palliative care, oncology and pain experts from a wide
2194 S.H. Ahmedzai et al. / European Journal of Cancer 40 (2004) 2192–2200

range of European countries. They represented both Specialised palliative care is the standard of palliative care pro-
medical and nursing disciplines. The working group vided at the expert level, by a trained multi-professional team,
who must continually update their skills and knowledge, in or-
discussed the issues and elected a writing committee to der to manage persisting and more complex problems and to
summarise the conclusions. provide specialised educational and practical resources to other
An early decision of the working group was that there non-specialist members of the primary or secondary care teams.
needed to be new definitions, not only of what palliative
We have used the term ‘specialised’ here, because
care itself consists, but of the different levels at which it
we recognise that the designation of a true specialty
is practised. The latter reflects the increasing sophisti-
and hence ‘specialist’ level for a professional working
cation of palliative care specialisation in many European
in a palliative care service currently varies between
countries, as well as other parts of the world, such as
countries. However, there should be an agreed mini-
Australia/New Zealand and North America. In a few
mum level of training and weekly commitment to
countries, notably Great Britain, Poland and Australia,
palliative care teamwork. The specialised palliative
palliative medicine is now recognised by the training
care team itself must be aware of its own abilities and
colleges as a distinct specialty or subspecialty of internal
limitations, and should be able to consult and refer
medicine. In many other countries where this degree of
patients to pain clinics, surgical and medical teams
official specialisation does not yet exist, there are nev-
for specific interventions, and other secondary
ertheless many highly developed services and teams
care services, according to the patient’s and family’s
based in primary or secondary care, which are delivering
needs.
high quality palliative care. Some of these services have
Specialised palliative care services should also con-
originated from hospices, others from oncology or pain
tain, or be linked to, a centre for research and education
teams.
in palliative care developments.
The level of persistence, severity or complexity of
problems which should activate a referral from generic
4. European School of Oncology’s proposed definitions of
healthcare professionals to those who can offer specia-
palliative care
lised palliative care needs to be further elucidated,
through international collaboration and prospective
The ESO international working group now proposes
clinical trials. For a guide, it should be accepted that
the following new definitions (together with accompa-
patients (or family carers) who have problems which
nying explanations), which we believe more accurately
persist for more than two weeks in spite of the best
reflects the ‘state of the art’ of current practice in Europe
available basic palliative care should be discussed with,
and other developed regions. The first definition is of
or referred to a specialised service.
palliative care itself and the second and third are re-
With respect to the severity or complexity of
finements which reflect the levels at which palliative care
problems, the level which triggers a need for discus-
can be delivered.
sion or actual referral to specialised palliative care will
Palliative care is the person-centred attention to physical symp- depend on the specific type of problem. Using pain as
toms and to psychological, social and existential distress and an example, patients should be thus referred to a
cultural needs in patients with limited prognosis, in order to op-
specialised service if pain reaches a level of 60 on 0–
timise the quality of life of patients and their families or friends.
100 mm scale (or is rated as ‘severe’ on a verbal scale
Basic palliative care is the level of palliative care which should be covering none–mild–moderate–severe); or if the pain
provided by all healthcare professionals, in primary or secondary has a major neuropathic component; or if the patient
care, within their duties to patients with life-limiting disease.
is intolerant of standard medication provided at the
All healthcare professionals who work with cancer level of basic palliative care. It is important that these
patients should have a minimum standard of educa- triggers are based on realistic criteria which reflect
tion and training to offer basic palliative care to all the capability of specialised teams to pick up refer-
their patients and clients for new or simple problems, rals and their ability to provide different and
and should be able to recognise when to refer them to more effective therapeutic interventions which are
a specialised palliative care team for persisting or evidence-based.
more complex problems. Although basic palliative We believe the broadening of the definition of
care was originally aimed at patients with advanced, palliative care, by both the WHO and the ESO in-
progressive cancer, its principles and benefits should ternational working group, to include patients at
also be made available to patients who have early earlier stages of cancer illness is helpful, but it should
disease or who are undergoing curative or life-pro- not detract from the special kind of care which is
longing therapy, but have a limited prognosis or required when patients are approaching the end of
special physical, psychological, social or existential or life. We therefore propose a further definition to
culturally determined needs. highlight this part of palliative care:
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End of life care 2 is the specific application of palliative care in- communication regarding the nature and stage of dis-
terventions and services in the last hours, days or weeks of life. ease, and the likely prognosis.
The phase of end of life care is entered not so much after Palliative care enables patients and families to face death from
any change in the patient’s medical status (which may be cancer.
difficult to discern in a chronic gradual deterioration), but
rather by a conscious decision by the healthcare team – Open communication and appropriate information
following appropriate discussion with the patient and help to prepare patients and families for advancing
family – that curative or life-prolonging treatments disease. Because of this, palliative care has tradition-
should no longer be pursued. This may indeed come after ally made its greatest contribution towards the end of
medical deterioration, but it may also follow a change in life. Hospice services, in particular, have been partic-
the mental attitude of the patient towards the illness. The ularly important in this aspect. However, patients and
passage into end of life care should mean that comfort families may also benefit from access to palliative care
measures should be of the highest priority, and it may be in the early stages of cancer, when treatments with
appropriate to withdraw previously useful life-maintain- curative or life-prolonging intention are being applied,
ing measures, such as blood transfusions, parenteral but uncertainty about outcome may be adding to their
feeding or intravenous hydration. anxieties.
As with palliative care itself, basic end of life care Palliative care also extends to providing bereavement support
should be part of the general knowledge and skills of for families and friends after the death of patients.
any healthcare professional, while specialised end of life This can be provided for simple cases of grieving by
care is provided by the multi-professional palliative care
any healthcare professional, but abnormal grieving
team for patients who are dying in difficult or complex
should be referred to trained individuals in a specialised
situations.
palliative care team, or to a special bereavement service.
5. European School of Oncology recommendations on Palliative care can be delivered wherever the patient is, or pre-
how palliative care should be delivered fers to be.

Palliative care should be available, at both basic and

The following recommendations and statements from specialised levels, in patients’ own homes, by educating,
the ESO international working group are meant to supporting and, at the specialised level, working along-
provide supplementary explanation and guidance of side the primary care team. It should also be available in
how palliative care is best deployed. the oncology centres, in follow-up or outreach clinics
Palliative care or end of life care at both levels offers rational and in general medical and surgical hospital units where
medical and nursing and other healthcare interventions which cancer patients are admitted.
should be evidence-based wherever possible, which are consis-
tent with the patient’s current anti-cancer treatment. A palliative care unit is a specially configured healthcare unit,
ideally with inpatient beds, ambulatory out-patient or day-care
Palliative care provides psychological, social and facilities and home care outreach services, which provides high
spiritual support to help patients and families to cope quality specialised palliative care.
with the disease, its treatments and – if incurable – with Such units can exist in hospitals, or can be based in
the adjustment to cancer progression and dying. It fa- the community. They are staffed by highly trained pro-
cilitates proven therapies from other members of the fessionals covering a range of disciplines which con-
general healthcare team, including validated comple- tribute to specialised palliative care. They are usually
mentary therapies which are consistent with other con- funded by the health service, and often have academic
ventional treatments that the patient is receiving. links with universities and may have partial funding
Palliative care places patients at the centre of decision-making. from charitable sources.

It empowers them and helps them to make more in- A hospice is the term used in many countries for a type of specia-
formed treatment choices to optimise their own quality lised palliative care unit, which concentrates on end of life care.
of life, based on an understanding of the benefits of Hospices also care for patients with advanced and
treatment balanced fairly against the side-effects and terminally ill non-malignant diseases. They are often
other costs. A pre-requisite for this is open and honest funded by charities, in some countries with significant
contributions from the state, and frequently have vol-
unteers who contribute time and skills to fund-raising
2
In this document ‘end of life care’ is used synonymously with, and and other support services. Regardless of the source of
in preference to, the older phrase ‘terminal care’. It should be noted
that in some European countries both ‘end of life care’ and ‘terminal
funding, they should always be integrated into the local
care’ have negative connotations and therefore the appropriate and regional strategic plans for providing comprehen-
translation will vary. sive palliative and supportive care.
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6. Why is palliative care especially relevant for cancer? 7. Minimum requirements for palliative care

The diagnosis of cancer is still associated, in the The ESO international working group proposes that
twenty first century, in the public’s mind with suffering in order to ensure an equitable provision of palliative
and the certainty of a painful death. Patients anticipate care throughout European countries, certain minimum
losses and suffering, even during cancer treatments requirements need to be met. We have attempted to
intended to cure. Even diseases commonly associated show, where possible, how these requirements may be
with a terminal outcome, such as human immunodefi- met through clinical and organisational protocols.
ciency virus/acquired immuno-deficient syndrome (HIV/
AIDS) or motor neurone disease (ALS), do not receive 7.1. Fundamental principles
the same public attention to pain and suffering as cancer
does. (It is recognised that this situation is changing (a) Palliative care should be recognised immediately in
globally because of greater public awareness and epi- all developed countries, and as a high priority in de-
demiological trends, and so we recommend that a later veloping countries, as an essential facet of healthcare
working group should address the special needs sur- for patients with cancer, and for their families and
rounding palliative care for non-cancer populations). close friends.
On the other hand, in many countries it should be ac- (b) Palliative care should be available around the clock,
knowledged that, at present, the diagnosis of cancer seven days a week, at a basic level through the gen-
makes the access to palliative care – where it exists – much eral healthcare services and at an expert level
easier. (The corollary of this is the relegation of non- through specialised palliative care teams.
cancer patients with life-threatening disease and unre- (c) All major cancer centres should include a specialised
lieved distress to a ‘second class’ position with respect to palliative care service.
accessing palliative care services; this inequity needs to be (d) Palliative care should aim to optimise the control of
addressed by a later working group). The problem arises pain and other distressing symptoms.
when patients’ and families’ expectations for palliative (e) Palliative care should offer psychological, social, ex-
care are raised by a diagnosis of cancer, and the actual istential and culturally sensitive support for patients
services are not available locally to respond to their needs. and their families and other informal carers.
In cancer treatment, oncologists may feel it is ap- (f) Palliative care should be part of each country’s na-
propriate to withdraw when they think the disease is not tional, regional and local plans for comprehensive
curable. This often leads to a sudden transition in the supportive care of cancer patients.
locus of care from secondary/tertiary care to the primary (g) The advancement of palliative care for cancer pa-
care team. The shift away from the protective hospital tients should be integrated with corresponding devel-
environment emphasises the need for good dialogue and opments covering palliative care for patients with
coordination between the oncology and primary care progressive and life-limiting non-malignant diseases.
teams, and for palliative care services to strengthen their
involvement with the patient and family at this point, so
that they do not need to feel abandoned. 7.2. Clinical issues
Patients with cancer may be younger than those with
most other chronic life-threatening diseases. This has (a) The objectives of palliative care services include –
special consequences for their families, which may in- (i) The optimisation of quality of life and of dig-
clude partners trying to remain at work and dependent nity in illness and in dying.
children; and for the professional carers, who are con- (ii) Recognising the patient’s choice and autonomy.
fronted with their own mortality by identification with (iii) Recognising the patient’s needs, in any care set-
patients of their own age. ting.
Prognostication in cancer is always uncertain, which (iv) Recognising the needs of family members dur-
can lead to increased anxieties and difficulties in plan- ing the illness and, if required, for bereavement
ning, even when the patient is apparently in remission, support.
and especially when the disease relapses with metastases (b) How to achieve these –
[8]. Furthermore, patients may die from cancer from a (i) When a patient has difficult symptoms which
variety of causes (local progression, metastases, non- cannot be controlled by his/her current health-
metastatic complications, iatrogenic illness, etc.) – thus care team, he/she has a right to be referred,
the clinical pathways are more varied and unpredictable and the current healthcare provider has an obli-
than with other non-malignant progressive diseases. gation to refer, to the local specialised palliative
This underlines the need for continuing surveillance and care team.
psychosocial support, which palliative care can provide (ii) Care should be provided preferably in the pa-
if it is available to all cancer patients by right. tient’s home, if that is his/her choice and it is
 S.H. Ahmedzai et al. / European Journal of Cancer 40 (2004) 2192–2200 2197

feasible, by a home care service working in liai- which emphasise the integrative approach to
son with the primary care team. supporting patients.
(iii) If care cannot be provided in the patient’s (ii) Palliative care should be taught at the under-
home, the palliative care team should be able graduate level in all disciplines.
to access and support the patient in any appro- (iii) Postgraduate training for any professions
priate outpatient, day-care or in-patient setting. which have contact with cancer patients,
(iv) Unnecessary restrictions on prescribing those and, in particular, for primary care staff and
drugs known to be helpful for symptom control, oncologists, should include a programme cov-
hinder the relief of pain and other forms of dis- ering advanced levels of palliative care.
tress; therefore there should be full and equal (iv) CPD of all specialties and of the primary care
access to all proven drugs, especially the potent team should include palliative care issues.
opioids. (v) CPD should teach professionals to be aware of
(v) The palliative care service should demonstrate their own limitations, to know where to access
multi-professional and interdisciplinary team- more information, and how to refer the patient
working. to a local palliative care team.
(vi) The palliative care team should support the pri- (vi) Professional attitudes towards palliative care
mary care team and oncology team in their own needs of patients and family carers may be en-
care of the patient, by sharing of knowledge, hanced through greater emphasis on communi-
skills and resources. cation skills teaching in all disciplines.
(vii) The palliative care team may take the lead in (vii) Education programmes for professionals in
the care of the patient, if appropriate, at the re- primary care and oncology should be jointly
quest of the primary care or oncology team. developed by their own disciplines and special-
(viii) The palliative care team should demonstrate the ists in palliative care.
application of recognised quality assurance pro- (viii) Professionals who work in a palliative care
grammes. team should have a structured training pro-
(ix) Socially isolated patients should be identified in gramme, which should emphasise competence
order to have their needs recognised and met. in delivering palliative care in a multi-profes-
(x) Patients and families from ethnic minority sional team, as well as working effectively as
groups should have their special cultural and re- an advisor to other professionals.
ligious needs recognised and met. (ix) At present, it is not recommended that special-
(xi) Children and young people with cancer should ists in palliative care should take examinations
have their special physical and psychologi- in this subject.
cal needs recognised and met, in conjunction (x) All countries should recognise the specialty of
with appropriate paediatric or adolescent palliative medicine, which should have an
services. agreed training programme (and within Eu-
rope, preferably harmonised across countries).
(xi) There should be at least one academic centre
7.3. Educational needs for palliative care, with a chair of palliative
medicine, in each country, to take the lead on
(a) The objectives of educational programmes in palliative medical education.
care include – (xii) There should be at least one chair of palliative
(i) Education, training and continuing profes- care nursing in each country to take the lead
sional development (CPD) should be available on nursing education.
for all disciplines working in palliative care. (xiii) Professional educational material relating to
(ii) Palliative care education, training and CPD palliative care should be available in all region-
should be aimed at improving knowledge, skills ally relevant languages.
and attitudes. (xiv) Information and educational programmes
(iii) Patients, their families and the public should aimed at the public should be available in all
have access to information and education on relevant languages, including the ethnic minor-
cancer and palliative care. ity groups in Westernised countries. Within
(iv) Healthcare policy-makers and politicians in all Europe, the European Union (EU) has an ob-
countries should be kept informed about pallia- ligation to make all these translations avail-
tive care priorities. able.
(b) How to achieve these – (xv) Within Europe, the EU should facilitate the
(i) Palliative care education should preferably be possibilities of exchange of current educational
delivered in multi-professional programmes programmes in palliative care developed in
2198 S.H. Ahmedzai et al. / European Journal of Cancer 40 (2004) 2192–2200

some Member States, to be used in other (xii) In Europe, the EU and national funding bo-
European countries, in the countries of the for- dies should be required to fund more pallia-
mer Soviet Union, and in other developing tive care research, e.g. by ‘ring-fencing’
countries. funds.
(xiii) European countries should set up research
fellowships in palliative care studies,
7.4. Research issues which should be available also to prospec-
tive researchers from the countries of the
(a) Objectives of research in palliative care – former Soviet Union and from developing
(i) There should be more research on subjective countries.
outcomes, especially measuring quality of life, (xiv) There should be more European and interna-
for patients with advanced and terminal tional research-based conferences which
cancer. cover all relevant disciplines and methodolo-
(ii) Research on palliative care aspects should be gies for palliative care studies.
undertaken at the same high levels of quality
and ethics as other types of cancer research.
(iii) All healthcare professionals should have access
to and be able to interpret the palliative care re- 8. What is the ‘gold standard’ for palliative care?
search which applies to their patients.
(b) How to achieve these – The ESO international working group wished to de-
(i) Palliative care research should be designed in scribe a ‘gold standard’ for palliative care in all Euro-
sympathy with the needs of the patients in pean countries. It realises that this is an idealistic
mind, and the methods may vary with different position, but one that nevertheless can be used as a
research questions and at different stages of target to be aimed at by healthcare professionals and
the disease. health services alike.
(ii) Methodologies for evaluating palliative care Ideally, all the features of basic and specialised pal-
interventions and services need to be further liative care described above, should be available imme-
developed and tested. diately in all developed countries, for all eligible
(iii) More research is needed on the basic mecha- patients. It should be emphasised that promoting palli-
nisms of symptoms and treatments, on suit- ative care is not about defining a new patient group or
able outcome measures including quality of new treatment modalities per se, but rather the rational
life scales, and on appropriate methodologies application of resources to optimise quality of life for
such as qualitative studies. seriously ill people. However, it is recognised that cur-
(iv) Within Europe, standardised instruments for rent limitations of finance and other resources (staffing,
palliative care research should be translated specifically designed units, beds, equipment, etc.) are
and validated in all EU languages, to facilitate lacking at different levels within Europe and also to a
international collaboration and comparisons. greater extent between Westernised and developing
(v) High quality research methodologists should countries.
be encouraged to become involved in the de- Details of what should constitute this ‘gold standard’
sign of palliative care studies. service can be found on the ESO website [9].
(vi) There should be more high quality palliative
care studies being published in high-impact,
peer-reviewed international journals.
(vii) The chairs of palliative medicine should take 9. What is meant by ‘multi-professional teamwork’?
the lead on medical research.
(viii) The chairs of palliative care nursing should Many times in this document, we have referred to
take the lead on nursing research. multi-professional teamwork. It is important to clarify
(ix) Education for all specialists in palliative care this, and to propose minimum requirements for pallia-
should include research methods training. tive care at both the basic and specialised levels.
(x) Palliative care researchers should collaborate 1. Multi-professional teamwork implies that a network
with senior researchers in other disciplines, exists of trained professionals in different branches
to undertake better studies. of health and social care.
(xi) Healthcare professionals should be shown and 2. This network should, for some ‘core’ members of the
should understand the benefits to patients and team, be founded on regular meetings or other forms
families from participating in palliative care of consultations where individual patients are
research. discussed.
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3. The core members of a multi-professional team in in Cancer (MASCC), European Association for Pallia-
palliative care depends on the level – tive Care (EAPC), International Association for Study
(i) For basic palliative care, the multi-professional of Pain (IASP) and International Union against Cancer
team should include at least the general practi- (UICC). In many European countries, there already exist
tioner and a community-based nurse, who have strong uni- and multi-professional organisations aimed
good access to one of the members of the oncol- at advancing palliative care. These should be consulted
ogy team (e.g. a specialised nurse or social and included in the discussions, and they should be en-
worker). couraged to share what they have individually learned
(ii) For specialised palliative care, the multi-profes- and developed. Organisations which could practically
sional team should ideally include – assist this multilateral collaboration are the Interna-
(a) One or more doctors trained to a higher level tional Observatory on End of Life Care [10] and the
in palliative medicine. EAPC Centre for Palliative Care in Eastern Europe [11].
(b) One or more nurses trained to a higher level in There is a move in Great Britain and other parts of
palliative care. the world to think in terms of ‘supportive care’ for
(c) Input from named and permanent profession- cancer and other life-limiting diseases. Just as there has
als from the following disciplines, who are been uncertainty and ambiguity about the meaning and
trained to a higher level in their own branch scope of palliative care, so supportive care is accompa-
of health or social care – nied by some confusion. The guidance from the UK
(a) Social work. National Institute for Clinical Excellence proposes that
(b) Psychology or psychiatry. supportive care is the comprehensive care of patients
(c) Nutritional support. and their families from the time of diagnosis, or even
(d) Physical therapy. pre-diagnosis, throughout both curative and palliative
(e) Occupational therapy. treatments [12]. Palliative care, according to the ESO
(f) Religious (pastoral) care – this may have definition given above, thus represents a crucial part of
to cover representatives from several reli- supportive care which is aimed at those in whom the
gions, depending on the location and cul- prognosis is limited. We would welcome further dia-
tural mix). logue between those involved in palliative care and in
(g) Pharmacy. supportive care to clarify the boundaries and overlaps.
(h) Validated complementary therapies. Finally, it is imperative that in order to offer truly
Further details of the working group’s recommen- patient-directed care, there has to be much more en-
dations on multi-professional teamworking can be gagement by professionals and those involved in run-
found on the ESO website [9]. ning palliative care services, with patients, their carers
and their representatives [13]. This must be done in a
way that gathers users’ views of the problems they en-
counter, the barriers they meet and the experiences they
10. What are the next steps in the implementation of this have of receiving palliative care.
framework?
Conflict of interest statement
The ESO international working group was convened
on an ad hoc basis, with representatives from several,
None.
but not all, European countries. It is important that
wide coverage of the issues and proposed solutions is
sought throughout the enlarged EU, especially with the Acknowledgements
many new countries which have joined in 2004. It would
be appropriate to hold a series of meetings based on the The international working group was convened by
original international group, but including more coun- the European School of Oncology and received funding
tries and also more disciplines. from the European Communities.
In order to further the aims and penetration of palli-
ative care into all areas of cancer management, there
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