1 Background
In 1991 a debate at the
European Parliament on euthanasia stimulated discussion at all levels in
Europe. Subsequently The Board of Directors of the European Association
for Palliative Care (EAPC) organised a working session together with two
experts to help them clarify the position the organisation should adopt
towards euthanasia. The experts collaborated with the Board of Directors
on a document and in 1994 the EAPC produced a first statement, Regarding
Euthanasia, published in the official journal of the EAPC – the European
Journal of Palliative Care.[1]
In February 2001 the EAPC Board asked an expert group to form an Ethics
Task Force to review the subject and advice the organisation
accordingly.
In the intervening years there
have been major developments and achievements in the field of palliative
care, as well as much discussion, some of it controversial, of
euthanasia and physician-assisted suicide. There has also been new
legislation in some countries.
It is important that the EAPC
contributes to informed public debates on these issues, especially as
European policy and law are becoming an increasing feature of modern
life. To do so requires careful and continuing discussion. This is no
straightforward task, as euthanasia and physician-assisted suicide are
two of the most complex and challenging ethical issues in the field of
health care today. This paper builds on current debates and develops a
viewpoint from the palliative care perspective.
It may be noted that most
patients receiving palliative care suffer from cancer. Across Europe,
unfortunately only a small minority of terminally ill cancer patients
have access to palliative care expertise. At the same time, some 86 per
cent of patients who die from euthanasia or physician-assisted suicide
in the Netherlands also suffer from cancer.[2]
2 Historical trends and current
situation
Around the world, some important changes
relating to euthanasia and physician-assisted suicide have been taking
place. In 1996, for the first time in history a democratic government
enacted a law that made both euthanasia and physician-assisted suicide
legal acts, under certain conditions – Rights of the Terminally Ill
Amendment Act 1996, Northern Territory, Australia.[3]
The law was however made ineffective by an amendment made to the
Northern Territory (Self-Government) Act 1978 of the Commonwealth by the
Parliament of Australia in 1997.[4]
In the same year, physician-assisted suicide (but not euthanasia) was
legalised according to the Oregon Death with Dignity Act.[5]
In April 2001, the Dutch parliament's Second Chamber made the necessary
changes in the penal code to make both euthanasia and physician-assisted
suicide legal under certain circumstances[6]
[7]
[8];
this law took effect in April 2002.[9]
Shortly thereafter, Belgium followed suit; the Federal Parliament’s
House of Representatives voted in favour of legalising euthanasia on May
16, 2002.[10]
Across Europe as a whole however, we have seen
little evidence in the last ten years of concerted attempts to bring
about the legalisation of euthanasia through parliamentary processes.
Indeed, in many European countries the legalisation of euthanasia is
opposed by a wide range of professional associations representing
doctors, nurses and others, and also by palliative care organisations.
3 Concepts and definitions
This paper presents, in turn, definitions of:
'palliative care'; 'euthanasia'; and 'physician-assisted suicide'. The
first originated with the EAPC and was later taken up and developed by
the World Health Organisation (WHO); it captures some of the underlying
norms and values of palliative care. The second and third say nothing
about the norms and values associated with what is defined. When the
expression “killing on request” is used in connection with euthanasia
this is a technical description of the act, based upon the procedure
used – usually an injection of a barbiturate to induce coma, followed by
the injection of a neuromuscular relaxant to stop respiration causing
the patient to die. Whether or not euthanasia may be justified killing
on request is another matter, addressed below. A sharp distinction
therefore exists here between what “is” and what “ought” to be.[11]
3.1 Palliative care
Across Europe palliative care is an expanding
and acknowledged part of health care. At the same time there are
continuing debates over what palliative care includes and where it
begins and ends (stage and type of disease, prognosis, care setting).[12]
[13] Regional, national and cultural
differences exist in the approach to and organisation of palliative
care. These different viewpoints are also reflected in professional
practice.[14]
Nevertheless, one particular definition of
palliative care has had a unifying impact on the palliative care
movements and organisations of many European countries. In Spring 1989,
the EAPC published a definition of palliative care in its first
newsletter,[15] which was endorsed by
the WHO in its document Cancer Pain Relief and Palliative Care.[16]
More recently, a new, modifed WHO definition has appeared:[17]
Palliative care is an approach that improves
the quality of life of patients and their families facing the problems
associated with life-threatening illness, through the prevention and
relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.
Palliative care:
-
Provides relief from pain and other
distressing symptoms
-
Affirms life and regards dying as a normal
process
-
Intends neither to hasten or postpone death
-
Integrates the psychological and spiritual
aspects of patient care
-
Offers a support system to help patients
live as actively as possible until death
-
Offers a support system to help the family
cope during the patient’s illness and in their own bereavement
-
Uses a team approach to address the needs of
patients and their families, including bereavement counselling, if
indicated
-
Will enhance quality of life, and may also
positively influence the course of illness
-
Is applicable early in the course of
illness, in conjunction with other therapies that are intended to
prolong life, such as chemotherapy or radiation therapy, and includes
those investigations needed to better understand and manage
distressing clinical complications.
3.2 Medicalised killing, withholding/withdrawing futile treatment,
and ‘terminal sedation’
Many definitions of euthanasia and
physician-assisted suicide have been formulated. None of the following
should be seen as euthanasia within the definitions used here:
-
Withholding futile treatment;
-
Withdrawing futile treatment;
-
Terminal sedation (the use of sedative
medication to relieve intolerable suffering in the last days of life).
Medicalised killing of a person without the
person’s consent, whether non-voluntary (where the person is unable to
consent) or involuntary (against the person’s will), is not euthanasia:
it is murder. Hence, euthanasia can be voluntary only.[18]
[19] Accordingly the frequently used
expression "voluntary euthanasia" should be abandoned since it by
logical implication, and incorrectly, entails that there are forms of
euthanasia which are not voluntary. In the literature, as well as in the
public debate, a distinction is sometimes drawn between so-called
"active" and "passive" euthanasia. It is our view that this distinction
is inappropriate. On our interpretation, as well as according to the
Dutch understanding,[20]
[21] euthanasia is active by definition and so "passive"
euthanasia is a contradiction in terms – in other words, there can be no
such thing.
Adoption of the following definitions is
recommended.
3.2.1 Euthanasia
Euthanasia is killing on request and is
defined as:
A doctor intentionally killing a person by the
administration of drugs, at that person’s voluntary and competent
request.
3.2.2 Physician-assisted suicide
Physician-assisted suicide is defined as:
A doctor intentionally helping a person to
commit suicide by providing drugs for self-administration, at that
person’s voluntary and competent request.
4 Key issues
It is the duty of EAPC to emphasise and
promote the importance of caring for patients with life-limiting illness
in accordance with the WHO (2002) definition of palliative care.
Palliative care aims to prevent or reduce suffering and hopelessness at
the end of life. Respect for autonomy is an important goal of palliative
care, which seeks to strengthen and restore autonomy, and not to destroy
it. Access to high quality palliative care must be promoted through
national and international policies that provide resources for a
competent multi-disciplinary palliative care workforce across Europe.
The Ethics Task Force takes the
following position:
-
It is recognised that within Europe several
approaches to euthanasia and physician-assisted suicide are emerging
and active debate surrounding this is to be encouraged.
-
Studies of attitudes to euthanasia and
physician-assisted suicide among professionals, patients and the wider
public as well as studies of their experiences of these issues may
inform the wider debate. Most of these studies however suffer from
significant methodological weaknesses raising doubts about the
evidence base. A more co-ordinated approach to these studies is
recommended.
-
Individual requests for euthanasia and
physician-assisted suicide are complex in origin and include personal,
psychological, social, cultural, economic and demographic factors.
Such requests require respect, careful attention, together with open
and sensitive communication in the clinical setting.
-
Requests for euthanasia and
physician-assisted suicide are often altered by the provision of
comprehensive palliative care. Individuals requesting euthanasia or
physician-assisted suicide should therefore have access to palliative
care expertise.
-
The provision of euthanasia and
physician-assisted suicide should not be part of the responsibility of
palliative care.
-
‘Terminal’ or ‘palliative’ sedation in those
imminently dying must be distinguished from euthanasia. In terminal
sedation the intention is to relieve intolerable suffering, the
procedure is to use a sedating drug for symptom control, and the
successful outcome is the alleviation of distress. In euthanasia the
intention is to kill the patient, the procedure is to administer a
lethal drug and the successful outcome is immediate death. In
palliative care mild sedation may be used therapeutically but in this
situation it does not adversely affect the patient's conscious level
or ability to communicate. The use of heavy sedation (which leads to
the patient becoming unconscious) may sometimes be necessary to
achieve identified therapeutic goals; however the level of sedation
must be reviewed on a regular basis and in general used only
temporarily. It is important that the patient is regularly monitored,
and that artificial hydration and nutrition are initiated when
clinically indicated.
-
If euthanasia is legalised in any society,
then the potential exists for: (a) pressure on vulnerable persons;
(b) the underdevelopment or devaluation of palliative care; (c)
conflict between legal requirements and the personal and professional
values of physicians and other health care professionals; (d)
widening of the clinical criteria to include other groups in society;
(e) an increase in the incidence of non-voluntary and involuntary
medicalised killing; (f) killing to become accepted within society.
-
Within the modern medical system patients
may fear that life will be prolonged unnecessarily or end in
unbearable distress. As a result euthanasia or physician-assisted
suicide may appear as an option. An alternative is to take action
through the use of ‘living wills’ and advance directives, contributing
to improved communication and advanced care planning and thereby
enhancing the autonomy of the patient.
-
The Ethics Task Force encourages the EAPC
and its members to engage in direct and open dialogue with those
within medicine and healthcare who promote euthanasia and
physician-assisted suicide. Understanding and respect for alternative
viewpoints is not the same as the ethical acceptance of either
euthanasia or of physician-assisted suicide.
-
EAPC should respect individual choices for
euthanasia and physician-assisted suicide, but it is important to
refocus attention onto the responsibility of all societies to provide
care for their elderly, dying and vulnerable citizens. A major
component in achieving this is the establishment of palliative care
within the mainstream health care systems of all European countries
supported by appropriate finance, education and research. Realising
this goal is one of the most powerful alternatives to calls for the
legalisation of euthanasia and physician-assisted suicide.
5
The EAPC Ethics Task Force on
Palliative Care and Euthanasia and its work
The Ethics Task Force met on three occasions:
at the 7th EAPC Congress, Palermo, Italy (April 2001)[22];
at the Unit for Applied Clinical Research, Faculty of Medicine,
Norwegian University of Science and Technology (NTNU), Trondheim, Norway
(September 2001)[23] and at the
Institut Universitaire Kurt Bösch, Sion, Switzerland (March 2002).[24]
The working methods of the Ethics Task Force
were as follows: A comprehensive literature review was undertaken and
disseminated to the members by the secretary. Members of the taskforce
group contributed individual written components and the consensus
document was formulated and agreed at the three meetings. The document
was presented to the EAPC Board in April 2002, after which some further
revisions followed prior to publication. The document represents the
views of the Ethics Task Force members and not of the EAPC.
During its work, the task force received two
manuscripts from Nathan Cherny, MBBS, FRACP (Israel) and one from Henk
ten Have, MD PhD (The Netherlands), that were most helpful. We thank
both researchers for their important contribution.
We would also like to thank our hosts in
Trondheim and in Sion for providing an excellent work environment.
The Task Force behind this paper had the
following members (in alphabetical order after chair):
Lars Johan Materstvedt, PhD
(Philosophy) – Chair & secretary
Postdoctoral Research Fellow, The Norwegian Cancer Society, Oslo
Associate Professor, Department of Philosophy, Faculty of Arts,
Norwegian University of Science and Technology (NTNU), Trondheim
Email:
lars.johan.materstvedt@medisin.ntnu.no
David Clark, PhD (Sociology)
Professor of Medical Sociology
Chair of Medical Sociology, Division of Clinical Sciences (South),
Section of Surgical and Anaesthetic Sciences, Academic Unit of
Palliative Medicine, University of Sheffield and Associate Director,
Trent Palliative Care Centre
John Ellershaw, MA FRCP
Medical Director – Marie Curie Centre Liverpool
Consultant in Palliative Medicine/Honorary Senior Lecturer – Royal
Liverpool University Hospitals
Reidun Førde, MD PhD
Professor of medical ethics, University of Oslo
Head of The Council of Ethics, The Norwegian Medical Association
Anne-Marie Boeck Gravgaard, MD
Specialist in internal medicine and family medicine
Vice President, SFPM – Swedish Association of Palliative Medicine
Helsingborgs Hospice
H. Christof Müller-Busch, MD PhD
Priv. Doz. Ltd. Arzt Gemeinschaftskrankenhaus Havelhoehe
Abtlg. für Anästhesiologie, Palliativmedizin und Schmerztherapie
Kladower Damm 221, D-14089 Berlin
Josep Porta i Sales, MD PhD, BA (Bioethics)
Consultant in Internal Medicine
Consultant in the Palliative Care Service, Institut Català d'Oncologia,
L'Hospitalet L. –Barcelona
Charles-Henri Rapin, MD PhD
Professor of Geriatrics
Médecin-chef de service
Policlinique de Gériatrie, 1205 Genève
References:
[1]
Roy DJ, Rapin C-H, and the EAPC Board of Directors. Regarding
euthanasia. Eur Jour Palliat Care 1994; 1: 57-59. (Also
available in full text at:
http://www.eapcnet.org/)
[2]
Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ,
van der Wal G, van der Maas PJ. Refused and granted requests for
euthanasia and assisted suicide in the Netherlands: interview study
with structured questionnaire. BMJ 2000: 321; 865-866. (Full text:
http://bmj.com/cgi/content/full/321/7265/865)
[8] Kimsma G, van Leeuwen E. The new Dutch law on legalizing
physician-assisted death. Cambridge Quarterly of Health Care
Ethics 2001: 10; 445-450.
[11] Hume D. A treatise
of human nature. Selby-Bigge LA, ed. Oxford: Oxford University
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[12]
ten Have H, Janssens R, eds. Palliative care in Europe: concepts
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[13] ten Have H, Clark D, eds. The ethics of palliative care: European
perspectives. Facing Death series. Oxford: Open University Press,
2002.
[14]
Clark D, ten Have H, Janssens R. Common threads? Palliative care
service developments in seven European countries. Palliat Med
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[17] Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: The
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[18]
Materstvedt LJ, Kaasa S. Euthanasia and physician-assisted suicide
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[19]
Griffiths J, Bood A, Weyers H. Euthanasia and law in the
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[20]
Kimsma GK. Euthanasia and euthanizing drugs in the Netherlands. In:
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[21] Kimsma GK, van Leeuwen E. Comparing two euthanasia protocols: the
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