C Explanatory Memorandum
by Mrs HUBINEK and Mr VOOGD
1 Introduction
1.1 Procedure
1. On 24 January 1974, Mr Archer and others presented
to the Parliamentary. Assembly a motion for a recommendation on
a European Declaration on the Rights of the Sick (Doc. 3401) with
a view to patients being accorded all rights and liberties so far
as compatible with their condition, in particular the right to information
as to their treatment and the right freely to decide on the kind
of treatment to be applied to them. The motion recommends that the
Committee of Ministers adopt a European Declaration on the Rights
of the Sick. On 25 January 1974 it was referred by the Assembly
to the Committee on Social and Health Questions (Reference No. 1004).
1.2 Background
2. In recent years, public opinion seems to have been
increasingly concerned with such questions as:
a the rights and duties of patients regarding the form of
care and treatment given to them;
b human experimentation, including the testing of new cures;
c organ transplants;
d progress in the field of genetics;
e problems concerning euthanasia.
What are the reasons for the
particular importance now being attached by society to these matters?
3. The background to some of these matters is a complex
one, covering, for example: the extraordinary progress made by medicine
as a result of its own development as well as of important discoveries
in biology, biochemistry and other sciences; the possibility of
prolonging life in previously inconceivable circumstances; the performance
of surgical operations on vital organs which it was formerly considered
to be fatal to stop functioning; the grafting of tissues and organs;
and the prevention or halting of the conception of human life without
any great disadvantage. Each of these scientific achievements poses
complex moral, social, legal and even economic problems, whose implications
frequently extend to the human rights sector. Nor should it be forgotten
that these important matters are tied up with the question of the
funds set aside for hospitals, medical care, drugs, treatment or
experimentation on patients to improve human welfare.
4. It is questionable whether national legislation can provide
solutions to these problems. It is a fact that the continuous progress
of technology and medical science in recent years has given rise
to a multitude of new problems for which no legislative solutions
have yet been found. Should the aim of medicine be to diagnose and
cure diseases or to help people to diagnose, resolve and master
their own individual and collective health problems? Of what use
is a diagnosis if it is not followed up by effective action arid
acceptable results? Whenever a new method is discovered, should
society necessarily make it available to all who are looking for it
P Or to all who can afford it? Or to all who require it? Should
one continue to develop a complex medical technology for the treatment
of acute or. fatal diseases, or would it be better to devote more
effort to diagnosing and curing complaints which have a major impact
on the quality of our lives? What proportion of health budgets should
be spent on therapeutics as opposed to medical care? Should funds
spent on medicines or forms of treatment whose effectiveness has
never been objectively assessed be transferred to services and personnel capable
of improving the living conditions of the chronic sick? To what
extent can a physician act as a teacher to the sick and to the healthy?
Is it sufficient simply to tell a patient that he is suffering from
a chronic illness and prescribe treatment for him, or should both
he and those around him be taught how to cope with the problem so
that he can lead a satisfactory life, in so far as he is able, without
being totally dependent on his family or his community?
5. It even seems probable that for certain specific problems
neither medicine nor legislation will ever find an adequate solution
at either national or international level because of various highly
complex moral, or religious factors. But in spite of these difficulties,
attempts have been made at both international and national level
to arrive at solutions. For several years now doctors and medical
lawyers have been holding frequent meetings for this purpose.
2 Development of the
concept of rights of the sick
2.1 The international level
6. At international level, numerous codes of ethics
have been drawn up since 1945, including the following:
- the Code of Nuremberg (1947),Note
- the International Code of Medical Ethics (London, 1949),
- the Declaration of Geneva (1948),
- the Declaration of Helsinki (1966),Note
- the Declaration of Sydney (1968),
- the Declaration of Oslo (1970), and the recommendation
adopted by the Round Table on Human Rights, organised by WHO (World
Health Organisation) and which took place in Geneva on 14 and 16 November
1973.
7. In October 1967, in co-operation with UNESCO and WHO, the
Council for International Organisations of Medical Sciences convened
a round table in Paris at which the ethical and even legal problems
raised by human experimentation were discussed. The difficulty in
obtaining consent in cases of organ transplants, particularly kidney
transplants, was emphasised. The members of the round table likewise
expressed the wish that in countries where there were centres capable
of carrying out such operations but where such operations were forbidden
by law, regulations be laid down to prescribe the circumstances
in which the voluntary donation of a transplant organ could be accepted.
8. Reference should be made here to the 1968 appeal by the General
Assembly of the United Nations, expressing world-wide concern and
requesting the Secretary General to prepare a report on the urgency
of a number of questions, including the protection of the individual
and his physical and intellectual integrity in the light of progress
in biology, medicine and biochemistry.
Note Attention
should also be drawn to another document, entitled Declaration on
the Rights of Mentally Retarded Persons, proclaimed by the United
Nations General Assembly on 20 December 1971. In 1971, the United
Nations Commission on Human Rights adopted Resolution 10 (XXVII)
envisaging a study being made of the implications of progress in
medicine, biology and biochemistry for human rights, particularly
for the protection of an individual's physical and intellectual
integrity, as well as for the right to health.
9. A further important provision, indeed the one which has the
closest bearing on our subject, is Article 7 of the International
Covenant on Civil and Political Rights, adopted by the United Nations
General Assembly on 16 December 1966, which states in particular
“that no one shall be subjected without his free consent to medical
or scientific experimentation”. However, this article is 'fair 'from
providing a solution to tie problems currently arising in this context.
10. These various international texts, particularly the Declarations
of Geneva 'and Helsinki, have considerably influenced the terms
of numerous codes of ethics relating to the medical profession in
several countries, notably France, the Federal Republic of Germany,
the Netherlands, Switzerland and the Scandinavian countries.
The Council of Europe
11. A group of experts on human clinical pharmacology,
restricted to eleven member states, is making a study of the various
problems relating to the scientific investigation of the effects
of drugs on man. The group considers it advisable to harmonise national
legislation on drug registration so as to achieve reciprocal recognition
of the results of pre-clinical and clinical testing of drugs. It
recommends in this context the drawing up of recommendations aimed
at improving facilities for initial clinical testing and the supervised
use of experimental forms of treatment. It also intends to carry
out co-ordinated research on the safe and effective use of registered
(marketed) drugs and to study the ethical, legal and insurance problems
raised by clinical testing (Doc. PA/SP (73) 26, appendix). The legal
problems raised by the removal, grafting and transplanting of human
organs were the subject of a general debate on member states' legislative
policy at the 9th Conference of European Ministers of Justice, which
took place in Vienna on 30 and 31 May 1974 (Doc. CMJ/Concl. (74)
1). The Ministers stressed the complexity of the problems involved,
pointing out that they had both legal and non- legal aspects. The
responsibilities of physicians and the rights of patients were the
subject of a Council of Europe symposium held in Lyons in March
1975. The points discussed included:
11.1 the economic aspects of the right to health (public health
expenditure trends in the different states; legal and economic aspects
of public health planning);
11.2 Patients' Charter (comparative study of Patients' Charters
in states where they already exist; problems of harmonising patients'
rights in relation to research and teaching; patients' rights depending on
whether the medical profession is organised on a private or a public
basis);
11.3 public health, preventive medicine and the rights of the
individual (compulsory reporting of diseases; individual health
record and automatic processing of medical data; compulsory vaccinations; protection
of the incapacitated);
11.4 civil liability of physicians;
11.5 ethical and legal limits to medical experimentation.
2.2 B. National level
12. As regards the national level, since 1972 the United
States has had a Patients' Bill of Rights (see Appendix III), which
has aroused great interest throughout the world, particularly in
France.
13. On 14 January 1974, Decree No. 74-27, generally known as the
“Charter of the Rights and Duties of the Sick”, was published by
the French Ministry of Health and Social Security. It deals, among
other things, with conditions for admission to and stays in hospitals.
Article 38 lays down that the reception of patients and those accompanying
them must be carried out at all levels by staff specially trained
for the purpose. Four rights are embodied in the decree:
- the right to be admitted and
discharged;
- the right to dignity;
- the right of communication;
- the right of information.
A patient's right to information
on the hospital, its staff and his own case is guaranteed by the
decree, which also makes provision for the distribution of an explanatory
booklet upon arrival, giving the patient practical information on
the hospital and its routine. The preparation of a separate charter
for the protection of the mentally sick was recently announced.
14. By formulating such rights, these two charters demonstrate
a concern to make hospitals more humane and ensure greater respect
for the dignity of patients. Generally speaking, the following basic
rights may be deduced from them:
- the
right to freedom;
- the right to personal dignity and
- integrity;
- the right to information; the right to proper care; the
right not to suffer.
2.3 C. Rights defined
15. Right to freedom. This fundamental right includes
the right to be admitted to hospital without difficulty and to leave
freely at any. time. The French Charter of the Rights and Duties
of the Sick, of 14 January 1974, specifies that a patient must be
allowed to leave hospital freely if he sees fit not to accept the
treatment offered him, regardless of his state of health, provided
he has settled any debts and signed a certificate discharging the
physician from liability in the event of the latter not giving his
agreement (Article 54 et seq.). The right also includes the right
to refuse surgery and new forms of therapeutic treatment.
16. Right to personal dignity and integrity. This right implies
that medical premises should be so arranged that examinations can
be carried out and treatment given without a patient suffering any
loss of dignity vis-à-vis other patients, physicians, hospital staff
or the outside world. A patient may demand that no information be revealed
regarding his presence at the hospital or his state of health, and
he may refuse visits from persons he does not wish to see. s It
should not be forgotten that a patient's human dignity generally
implies a right to the truth, which is therefore closely linked
to a patient's right to information. An individual is entitled to
respect for the integrity of his being as a whole (body and mind).
Naturally, physicians may not violate this integrity, even at the
request of the person concerned, unless this is required by the
latter's treatment. The law has in fact had to be adjusted to give
doctors a say, as it is sometimes difficult to judge whether medical
intervention is necessary. This too is a matter for a physician's
own conscience.
17. Right to information. A patient's right to information on
the hospital, its staff and his own case is also a fundamental right.
In several countries (for example, Canada, the United States and
France) a booklet is issued to patients upon admission to hospital,
giving them all relevant practical information on the establishment
and its routine. The recent French decree referred to above makes
the distribution of this booklet compulsory. A patient has a right
to know who is treating him and how he is being treated. He is,
moreover, entitled to accept or refuse any forms of treatment or
care offered him. In ail too many cases he is unaware of this. Implicit
in this right to refuse treatment is of course the patient's right
to receive adequate information on his state of health from the
physicians and other, qualified staff, as well as to have the necessary
information given to his family and to have his medical record passed
on as promptly as possible by the hospital medical staff to the physicians
responsible for his treatment both during and after his stay in
hospital. All forms of medical care require the participation of
the patient, Moreover, his free and informed consent is necessary.
It is therefore essential that a physician inform his patient of
the chances of his illness being cured. Free and informed consent
of this kind is sometimes difficult to guarantee. In most cases
the patient will not be qualified to make any choice, and in some
instances, although his consent may. be freely given, it will not
be particularly informed, as a patient is often unable to take a
valid decision about himself. There is no precise definition of the
term “consent”. Legal theory and practice are, however, in agreement
in requiring that consent be not just free but above all informed,
and be preceded by detailed and accurate information on the conditions
and effects of the action proposed.
18. Right to proper care. This light overlaps with the right to
information and the right to physical integrity, particularly in
the case of human experimentation, including the trying out of new
forms of therapy. A patient must have the right to benefit from
experimentation and new forms of treatment, but also the right not
to suffer as a result. The sole purpose of treatment in the case
of experimentation with new drugs must be curative, i.e. experimentation
should be permitted only where the advantages outweigh the disadvantages.
One of the questions to have aroused most reaction in certain countries
in recent years is, without doubt, that of human experimentation.
The problem was seldom discussed before the second world war. Afterwards
there was an increase in the use of volunteers (students, prisoners,
migrant workers) as patients. The World Medical Association considered
it necessary to publish a declaration known as the Declaration of
Helsinki, the text of which is attached (see Appendix II). This
declaration, which embodies the gist of the Code of Nuremberg rules, is
frequently quoted by medical researchers throughout the world in
connection with human experimentation. It makes a distinction between
the use of experimental forms of treatment and non- therapeutic experimentation.
In the case of the former, it lays down that a physician must be
free to apply an experimental method of treatment if he considers
it offers a genuine chance of saving the patient's life, restoring
his health or alleviating his suffering; where possible, the physician
must obtain the patient's free and informed consent. With regard
to non-therapeutic experimentation, the declaration specifies that
the free consent of the person concerned must be obtained in all
circumstances and that he must be informed by the physician of the
nature, aims and dangers of the experiment envisaged. As a result
of this declaration, codes of ethics have been drawn up for the
same purpose in several countries, including the United States,
Austria (official publication of the Ministry of Social Affairs,
19 December 1976) and France (Decree No. 72-1062 of 21 November
1962 on specialised drugs and experimentation with drugs).
Note
19. Right not to suffer. This right includes not only a patient's
right to benefit from all the newest methods capable of facilitating
a diagnosis effecting a cure or alleviating pain but also, in this
case, the right to stop suffering altogether. It is an established
fact that medical progress has led to greater longevity without
always preventing the deterioration of organic functions. Moreover,
continuation of a life without hope can cause great suffering, not
only for the patient himself but also for those around him. Where
the diagnosis has been medically confirmed, should a life devoid
of all hope be kept going or should the patient be given the right,
if he can express himself, to stop suffering altogether, to be given
immediate and painless relief?
20. There are various other questions relevant to the subject
under discussion. Although they cannot be examined in detail, they
should nevertheless be mentioned, in particular the question of
the protection of medical secrecy and that of the responsibilities
and rights of a physician. With regard to professional secrecy, the
use of automatic data-processing in medicine, particularly for medical
files, prompts the view that medical secrecy and a patient's right
to privacy may no longer be protected in the same way as hitherto.
This may well turn out to be a real danger, and responsibilities
of the medical profession in this field are considerable.
2.4 D. Definition of death and
organ, transplants
21. The right to physical and mental integrity is particularly
closely connected with the definition of death, as well as the transplanting
or removal of organs. This is because it is important to know at
what moment it is permissible to stop a heart, artificial lung etc.
functioning, and in particular at what moment it is permissible
to use a body for organ transplants.
22. At international level, the most frequently quoted definitions
of death are those of the Council for International Organisations
of Medical Sciences (CIOMS), dating from 1968, the one in the Declaration
of Sydney, formulated the same year, and that of the International
Transplant Society, dating from 1970. In addition, in 1968 an ad
hoc committee of the Harvard Medical School established a new and
clear definition of cerebral death which has subsequently been adopted
verbatim or with few modifications by many national medical associations.
The new definition was deliberately concerned with organ transplant
surgery. It made the “killing” of the donor of an organ (chiefly
in the case of kidney transplant operations) for the sake of the
recipient of the organ medically and ethically permissible. “Killing”
for the sake of the recipient normally occurs by switching off the
breathing apparatus. As a purely secondary matter the definition
permitted switching off the apparatus in the case of other patients
whose brains had died but who were not donors of organs. It should
be mentioned that there is no specific reference to criteria for
establishing death in either the recommendation of the International
Transplant Society or the Declaration of Sydney. At national level,
there are various definitions of death in both statute law and case
law. These include a definition by the American State of Kansas
and a Swiss definition (Judgement of 28 June 1972 by the Federal
Court, which accepts “cerebral death as a criterion which is now
almost unanimously recognised” (Chambre de droit public, Recueil
Officiel, pp. 491 et seq.)). The protection of the right to live,
and hence a reliable definition of death, is of such importance
as to warrant being embodied in a statutory provision.
23. With regard to the transplantation of organs, there is no
legislation in France on the removal of organs from living persons,
but French legal theory and case law do refer to cases of necessity.
The removal of organs from living persons must comply with the following
conditions:
- organs may only
be donated (i.e. not sold);
- the donor must give his “informed” consent. The consent
of the donor is not sufficient if the operation is not carried out
for a legitimate purpose. Removal must not be contrary to morality
or the rules of social conduct.
3 The question of euthanasia
3.1 Introduction
24. Examination of the list of rights in II. C above,
together with the 'formulation in the original motion for a recommendation
(
Doc. 3401), which mentions in particular the right to dignity,
the right to information and the right freely to decide on the kind
of treatment, gives rise to reflection on the extent of the rights
involved; at least three of the rights mentioned – the right to
freedom, the right to decide on treatment and the right not to suffer, might
well be thought to point toward a right to euthanasia. From the
start the committee showed strong interest in this aspect, and the
present section is an attempt to clarify a few of the issues involved.
25. It should be noted that the European Convention for the Protection
of Human Rights and Fundamental Freedoms defines, as the first right
to be protected, the right to life. At some point a consideration
of euthanasia must examine the trade-off between the right to life
and the right not to suffer. In so far as attention is confined to
the individual whose life or suffering is involved, the conflict
may exist only at a superficial level, since rights are not mandatory
– one may choose not to exercise a right. On the other hand, at
the level of medical ethics an uneasy tension may be generated between
the instinct – or even die duty (if there is a right not to suffer)
– to prevent suffering and the duty to prolong life. Moreover, at
the level of general socio-medical policy, decisions have from time
to time to be made between the preservation of life at all costs
– where relatively few persons may be involved and the cost may
be astronomically high – and the more general prevention of suffering
at a less dramatic stage for a much larger section of the population.
The emotional force of the euthanasia issue derives, in one perspective,
less from concern that certain individuals might choose not to exercise
their right to life, but that society might arbitrarily and in a
more or less obligatory way refuse to recognise the right to life
of certain individuals, or even categories of individual. An attempt
is made below to delimit the sense of euthanasia for the present
discussion in a way which would exclude such situations; but in
any discussion of euthanasia, the right to life provides- a salutary
starting point.
26. The right not to suffer, on the other hand, immediately creates
very serious problems. It is an intrinsically ill-formed concept,
since the corresponding duty may very well be incapable of fulfilment;
in that case, by a fundamental rule of jurisprudence, it is void.
More seriously, the alternative implications of a right not to suffer may
be mutually contradictory: it may imply a right to be cured, to
be anaesthetised or to be put permanently beyond suffering; and
the decision between these may be not simply a technical matter
but a question of priorities, of balancing short-term suffering
by long-term benefit, and so forth. It would be wrong, however,
to suppose that the right not to suffer constitutes the only justification
for euthanasia, even if it is that most generally cited. In particular,
one may refer here to cases of persons kept alive but unconscious
over long periods. There is presumably no suffering involved, yet
the question of the indefinite prolongation of life in such cases
is frequently posed.
3.2 The basis of discussion
27. For the present purpose the term “euthanasia” may
be used to refer to any death which is not wholly natural
Note and not accidental
– therefore implying that a conscious decision is made – which is
not suicide – and therefore involves an agency other than the subject
– and is not murder – and is therefore not contrary to the will
of the subject. If the term is understood in this way, it clearly
throws up several of the larger issues which are usually canvassed
in discussions of this subject, namely the taking of the decision,
the establishment that the act is voluntary and the role of the
outside agent. The first two in turn raise very important issues
of information and knowledge where the role of the outside agent
(the doctor) as expert is fundamental. In this connection it may
be worth considering briefly why the doctor comes naturally to mind
as the agent in euthanasia. The answer is twofold: first, the question
most obviously concerns those who are already in need of and undergoing
medical care; secondly, doctors command the most acceptable means
of euthanasia. It is also arguable that in the situations in question
the doctors' judgment may be the most balanced. Clearly, in cases
of passive euthanasia these two factors coincide.
28. Discussion is regularly based upon a distinction between “active”
and “passive” euthanasia; whereas active euthanasia would involve
an act which would shorten or terminate life, passive euthanasia
signifies failure to take action which may prolong life. In practice,
it may be extraordinarily difficult to draw the distinction between
the two. The term “indirect euthanasia” is also used to refer to
cases where death is caused as an undesired side-effect of action
undertaken for some other purpose.
29. It should be noted at this point that attempts are sometimes
made to exclude the concept of passive euthanasia on the grounds
either that the term euthanasia is misleading in such an area or
on the grounds that the kinds of activity referred to by die term
are so different – so obviously humane and acceptable – that it should
not be discussed in the same context as any form of active killing.
This attitude is misleading.
30. For reasons which will become apparent, it is unacceptable
to say simply that decisions on further treatment of a dying patient,
including the question whether or not to give any further treatment,
are simply matters of clinical judgement. Moreover, as Professor
Haemmerli has pointed out, “if the overall term euthanasia is restricted
to patients who are bound to die of their basic disease, then the
distinctions between passive and active euthanasia may be no more
than a play on words”. Professor Haemmerli has further shown that
the act of switching off breathing apparatus in the case of the
patient whose brain has died is active in the sense that it is an
act of commission but passive at the level of intention where passive
euthanasia constitutes tire omission or interruption of an attempt
to save the patient. It is also to be emphasised that, in practice,
when certain artificial means of maintaining life are switched off
or disconnected, the doctor is obliged to act positively to put
an end to the agonising asphyxiation which would otherwise result.
Certain members of the committee have expressed the view that, while
active and passive euthanasia achieve the same material result,
there is a fundamental difference in the moral quality of the act
in the two cases. The Rapporteurs cannot share this view; it is
essential that a discussion of euthanasia include a discussion of
passive euthanasia understood as in the sense formulated above.
31. The concept of death requires a certain clarification in view
of the advances in medical thinking in recent years. Traditionally,
death was established by the cessation of circulation and respiration.
Recently, the question of change in this position has been discussed
in the context of the transplantation of organs, and the ethical
problems of reanimation and the maintenance of life by artificial
means. There is pressure for a new concept of cerebral death on
the basis of a total, irreversible loss of central brain function.
Where this occurs – or even where the brain functions to the extent
of regulating the elementary bodily functions, in particular spontaneous
respiration – the life of the body has to be maintained by artificial
means. It is natural that there should be a temptation to see death
as having already occurred with the onset of such a condition. It
would solve serious problems in the supply of organs for transplantation;
it would also remove doubt over the justifiability of discontinuing
life-saving treatment for patients in the condition described. There
remain, however, grave problems of uncertainty. Not only does the
concept require expertise and equipment which are beyond the reach
not only of laymen but of most doctors; it also creates an uncertainty
over the time of death. It will therefore be assumed in what follows
that death is for the present to be determined by the traditional means.
32. It is also important to avoid introducing a category of the
“dying” intermediate between the living and the dead. Doctors and
scientists find it unrealistic to think in terms of a sharp distinction
between the two states; some philosophers have held similar views.
It is clearly the case that death is a gradual process and that different
levels of death may be distinguished. On the other hand, the process
in strictly scientific terms is immeasurably longer than is indicated
by most of those who wish to use the category of the “dying”; the
concept must introduce a degree of uncertainty unacceptable to the
law; and in political terms any policy based upon it would arouse
a disastrous reaction in public opinion. For all these reasons,
therefore, the category is best eliminated. We shall assume that
persons are living up to the moment of death as traditionally defined
and dead thereafter.
3.3 The medical viewpoint
33. On the basis of statements made to the committee
as well as information appearing in the press and elsewhere, it
may be said that the medical viewpoint on the topic of euthanasia
amounts to a demand for freedom to act in accordance with the doctor's
professional judgement and ethical principles, together with a refusal
to be involved in killing upon request. There are a few exceptions
to the latter while the former proposition is subject only to the
qualification that doctors would welcome a legal framework which
guaranteed their professional freedom rather than one which may,
as at present, burst in haphazardly upon their sphere of activity.
Professor Haemmerli, in his statement before the committee, claimed
by implication that sick and dying persons do not think rationally
in the same way as when they are in good health, and that only “experienced reality”
of death, with which doctors and nurses are in daily contact, provides
an adequate basis for judgement in this area. Such a position depends
heavily upon a conviction, not only of the good faith but also of
the good sense of the medical profession as a whole. It is, to some
extent, belied by the gap which all medical men are prepared to
acknowledge between ideal medical treatment within the limits of
current knowledge and the situation as it often exists in practice.
This gap may be due to lack of resources, insensitive medical policies
or tire over-zealous medication which all deplore. In the last case,
regulation is needed to counteract the effects of mistaken zeal
by doctors themselves. In the other two cases, the decision is,
in any event, one to be taken outside the medical profession.
34. There are, however, more serious objections to the medical
viewpoint with its demand to be left free of interference. It is
in the interests of doctors themselves, and, therefore, ultimately
of their patients, to be protected against the consequences of too
much freedom. Any discretion invites disputes as to whether or not it
has been properly exercised in a given case. Professor Wilkes, in
speaking to the committee, drew attention to the problems faced
in the legal sphere by doctors in the USA, where the question of
professional liability insurance is in consequence becoming a whole
area of study on its own. It is in the interests of doctors that there
should be as precise guidelines as are consistent with the progress
of medical science. To take an example relative to what has already
been said: would doctors in general really welcome the freedom to establish
cerebral death, on the basis of an electro-electroencephalogram
reading over a period of time, with the enormously costly implications
this could have in the field of inheritance law, insurance claims
and so forth?
35. Nevertheless, it might be argued, despite the consequences
for doctors, that only medical science is competent to define the
moment of death. In ideal terms, this may be true so long as medical
science is unambiguously concerned with the care of each patient
seen absolutely as an individual; but these conditions are very
stringent and it is scarcely possible for them to be realised in
the present day. Unavoidable complications create ambiguities in
obvious ways, such as possible tensions between (lie interests of
an organ donor and of the recipient, but also much more generally
over the proper allocation of scarce resources between various competing
priorities. The therapeutic purpose of a medical act is a key concept
in legal thinking and once it is put in doubt, doubt falls equally
upon any absolute claim of medical science to non-interference.
36. A particular aspect of the medical viewpoint requires consideration,
namely the claim that doctors can judge when a particular course
of 'action, or its continuation, would be “pointless”. In any but
a purely medical forum this term is dangerously ambiguous. No doubt
a conscientious doctor in using this term refers to a matter of
technical judgement whether a particular course of action will,
in fact, achieve the desired end. To the laymen, on the other hand,
the term may naturally convey a value judgement as to the quality
of the result which may be expected, and whether it is worth the
effort. It may be that such judgements have to be made, but the medical
profession is not trained for them, as has often been remarked,
and it is arguable that value judgements of this kind do not properly
form any part of a doctor's work.
37. It is impossible, in this context, to embark upon full-scale
discussion of medical ethics or the doctor's duty. Disagreements
are, in general, over questions of emphasis and priority, but all
would agree that one may distinguish three principal elements in
medical care: cure, care and the preservation of life. The first
has traditionally held the pre-eminent position, in part, as was
recently pointed out in Le Monde (6 May 1975), because medical ethics
developed in a period when the principal duty was to combat fatal
diseases among the young. The same attitudes are not immediately
transferable to the present-day situation, where two thirds of all
deaths occur among the old who are subject to progressive physical
decline. By a natural progression of -drought, tire traditional
medical view has tended to the belief that failure of attempts to
cure or, more recently, to prolong life, marks the effective termination
of medical activity. The special skills required for the care of incurable
patients have thus received less attention than they deserve.
38. This distinction between curing from caring reveals a further
danger in judgements of “pointlessness”. Judgements of this kind
are concerned with some goal, either its feasibility or its value,
which must give the process its justification. The concept of caring,
on the other hand, is not one which implies a goal to be achieved;
rather, medical care in this sense is justified at each moment.
The relief of suffering is self-justifying.
3.4 The legal aspect
39. There is no specific legal treatment of euthanasia
as such in the legal systems of Council of Europe member states,
although there are a number of legal provisions which bear on the
subject, concerning homicide, suicide and the professional duties
of doctors. It would be convenient here to rely upon the distinction between
active and passive euthanasia.
Active euthanasia
40. Since suicide is no longer a crime in any Council
of Europe member state, it might be supposed that assisted suicide
– which is what active euthanasia in the sense defined often amounts
to – would equally be permissible. The situation is not so simple,
however, and the individual case may often depend upon the degree
of participation of those involved. German legislation, according
to which complicity in suicide is not a crime, nevertheless includes
a specific prohibition of killing on demand, and the subject is
variously treated in other systems. In England, a complicated situation
was produced by the combined effects of the Homicide Act of 1957
and the Suicide Act of 1961 which made suicide no longer a crime.
While killing upon request is still murder, a new offence of complicity
in suicide was created; one must therefore take the view that there
is a liberty and not a right to commit suicide. This probably corresponds
to the position resulting from other legislations also. (This may
raise problems as to whether or not one has the right to restrain
someone from committing suicide or whether such an attempt would
constitute an assault.) It is clear that the permissibility of suicide
has not also established the permissibility of assistance in committing
suicide. In general, this is an ill-defined area and the position
varies from one country to another. While in Germany, complicity
in suicide is not a crime, there exists, as in France, an offence
of non-assistance to a person in danger. Depending upon the legislation,
a doctor who kills a suffering patient at his request may be accused
of premeditated homicide, though in certain cases with a less severe
penalty.
41. The situation is clearly different where there is no clear
consent of the person concerned, for example, by reason of unconsciousness.
In such cases, there has been a tendency towards nominal penalties
in view of the doctor's motivation, or even of acquittal on the
grounds of doubt whether the doctor's act was in fact responsible
for the death of the patient. A recent report of the Church of England
expressed the view that flexibility of this kind in the application
of the legal system was preferable to any change, but it must be
doubted whether the position is entirely satisfactory. Explicit
reliance upon flexibility in the law brings it into disrepute.
Passive euthanasia
42. The legal position in respect of passive euthanasia
depends upon three points: the possibility recognised by some, but
not all, legislations of homicide by omission; the professional
duty of the doctor; and the right of the patient to refuse treatment.
The first is a difficult area into which it would be unprofitable
to enter; it is, in any case, unlikely that a charge of homicide
by omission would be brought in the present climate of opinion against
a doctor who, for appropriate motivation, omitted or interrupted
a course of treatment which was senseless. On the obligation of
a doctor to provide the best possible care, the vital question from
a legal point of view is the objective establishment on purely medical
grounds of the soundness of any decision. This will involve such
questions as confirmatory or conflicting opinions by other members
of the profession, and the establishment of motivation.
43. The right of the patient to refuse treatment is the foundation
of the law on medical treatment. Any medical act is, in principle,
an assault upon the person unless it can be shown that the patient
consented, and the common-law countries take a particularly robust
position on this. The patient, therefore, has an established right
to refuse treatment, a right which courts will, in general, interfere
with only for the most imperative reasons, for example, in the interests
of a related child. The same is not true, for example, in France,
where doctors have been accused of omitting necessary treatment
when they have obeyed a patient's wishes in this respect. It might
seem that for the common-law countries there was a clear right to
passive euthanasia. However, in practical terms, this has less significance
than might appear. In the nature of tire case passive euthanasia
is, in general, of significance in cases of patients artificially
kept alive, and such patients will very often be in no condition
to express their view. Those who are fully conscious and suffering
and wishing to die would, in general, need some more active measure.
The right to refuse treatment, therefore, provides no clear solution to
the problem of passive euthanasia.
Consent
44. The fundamental concept, from a legal point of view,
in the whole question of euthanasia, whether active or passive,
is that of consent. At the present time, under most legal systems,
the general rule with regard to medical treatment might be summed
up by saying that therapeutic purpose plus consent amounts to legality. Thus,
if the doctor acts with a view to the proper care or cure of his
patient, and the patient consents, then legal problems do not arise.
However, there are limits to the validity of consent even where
there is a therapeutic purpose; consent to an operation which in
some way maims the patient is not valid. The act, in other words, must
not be intrinsically unlawful. Even outside the medical sphere,
the rule applies: it is no defence to a charge of homicide that
the victim consented. It has already been noted above, moreover,
that the validity of consent is limited in French law and under
other systems, in the opposite sense also that the absence of consent
to a necessary course of treatment may be overruled. At the conceptual
level, therefore, there does not at present exist any absolute right
of self-determination with respect to physical treatment in general
and death in particular.
45. It is to be noted that consent, in order to have any significance,
carries certain implications, above all with respect to the competence
of the subject to decide for himself, his freedom from outside pressure,
and the adequacy of the information upon which his decision is based.
These issues have been very much discussed in recent years in the
context of organ transplantation. They clearly require even more
serious consideration in tie context of euthanasia. The question
of competence, for example, is particularly relevant to precisely
the categories of persons who may be envisaged in discussions of
certain types of euthanasia, for example the very old, whose physical
decline is matched by a decline in their mental powers. Again, the
question of adequate information, as a basis for the decision, requires
close attention in view of the prohibition by the French code of
medical ethics on revealing to a patient a seriously unfavourable
prognosis.
46. It is arguable also that consent, even with the safeguards
already mentioned, is not a sufficiently strong concept, since it
implies that the initiative comes from elsewhere. Such a situation,
in practice, would be unacceptable. It is unimaginable that doctors
should invite their patients to allow themselves to be killed.
4 Some conclusions
47. With this background, it may be useful to consider
what are the situations most likely to arise in practice. They fall,
in general, into two categories: first, persons Who are sick but
not in a terminal position, conscious, in full possession of their
faculties and suffering to an extent which makes them desire a final
relief; secondly, those who are in a clearly terminal position,
maintained in life by artificial means, unconscious. In general,
those in the first category desire a positive relief from their
suffering by any means and require assistance to this end. The second
category may be presumed not to suffer or to desire anything; yet
the question presents itself to those who have care for them whether
their condition should be maintained indefinitely. There are also
many persons who are in neither condition, who are, in fact, in
perfect health and sanity but who, through fear or distaste for
the conditions described, wish by means of an advance declaration
in favour of euthanasia, to avoid reaching them.
48. With respect to the first category, it is claimed by all doctors
that there should be no need for any patient to suffer severe pain,
that is, that the technical means are available, if properly applied,
to control pain. Two obvious questions arise: are these means always
applied and properly applied? Secondly, and especially if the answer
to the first question is “no”, should the desire of such patients
to end their suffering permanently be respected? The answer to the
first question is clearly negative; while the relief of pain in
specialised clinics or hospitals and by staff specialised in these
questions is, undoubtedly very effective, it is obviously the case
that many other persons do suffer unnecessarily. In particular,
it is to be noted that an improvement in pain relief is often reported
upon transfer from hospitals where the standard of medicine is generally
very high, for example, university teaching hospitals, to institutions
specialising in the care of patients in this condition.
49. Action, then, is required. Is it possible to anticipate such
an improvement in the relief of pain for all patients that no further
action will be necessary?. If not, is “mercy killing” an appropriate
answer? Should it be the patient's right in any case? There is,
in effect, a distinction to be drawn between relieving pain by action
to shorten life and shortening life by action to relieve pain. Most
doctors are prepared to consider the latter if necessary, that is
to say, the provision of such measures for the relief of pain as
risk a shortening of life. It is difficult to say that this would
conflict with medical ethics. Positive action to shorten life, however,
is in principle rejected by almost all doctors. This would be an
important barrier to be overcome if the patient's right to request such
action were admitted. It is to be noted, in addition, that all doctors
report an infinitesimally small number of requests for such action
from patients in this condition.
50. On the other hand, it is not unknown for requests in this
sense to be received from the friends or relatives of the patient.
Such requests are to be absolutely resisted where a patient is in
full possession of his faculties and does not express any wish or
consent to be killed. Such an act would, at present, certainly constitute premeditated
homicide and there can be no justification for a change in that
legal position.
51. On 27 January 1975 a motion was submitted to the Conseil national
in Switzerland which envisaged an amendment of the existing penal
code to the effect that actions against the life or person of a
patient would not be an offence if carried out with the intention
of shortening the suffering of a patient, who was bound to die painfully
and within a short time. The doctor would be obliged as far as possible
to procure the consent of the patient and, where appropriate, of
his legal representative, and to take into account the opinion of
his relatives. In the light of what has been said above, it is clear
that this proposal includes two very dubious features: first the
qualification on the requirement of the patient's consent that this
should be procured “as far as possible”; secondly, the admission
of action to relieve pain by shortening life. On the other hand,
it should toe noted that tire opinion of relatives is to be sought
only where the patient is not in a position to express himself.
This point, will be considered below.
52. With respect to those suffering from illness from which there
is no hope for a cure, who are not in full possession of their faculties
and who are maintained in life by artificial means, the problems
are extremely complex. From the legal point of view, difficulties
must arise by reason of the fact that the patient is incapable of
expressing his own wishes. The question arises in such circumstances
of whether, and within what limits, others may take decisions which
vitally affect him. Some decisions are of a technical or clinical
nature, most notably the establishment that the condition is irreversible
and the discovery of the means most suited to prolong life. There
is, however, a fundamental decision which is of a non-technical
nature, namely, how long should life be prolonged by artificial
means.
53. There are serious ambiguities in this area depending upon
the point of view adopted and, as has been shown above, the distinction
between active and passive euthanasia or between commission and
omission may break down. On the one hand, it may seem abhorrent
consciously to act in such a way that the life of the patient will
be shortened. On the other hand, the maintenance of life by artificial
means of those who can never hope to regain their personality over
an indefinite period is patently contrary to sense and humanity.
But at what moment may the decision be taken and, above all, on
what grounds? If it is no longer a matter of clinical judgement,
there seems no good reason why the doctor alone should be entrusted
with this decision. There remains only the possibility of empowering
relatives of the patient to act in such an area. The dangers here
are obvious, not only of bad faith on the part of the relatives,
conscious of their own rather than the patient's interests, but
more generally, the problem of a judgement clouded by familiarity
with the patient and his condition. It may be that, in such a situation,
the proper solution would be to leave the initiative to close relatives of
the patient, with the decision to be confirmed by more than one
doctor; there would have to be special provision for cases where
there are no close relatives. In very advanced cases, however, where
the patient has reached the stage of “brain death”, it is arguable
that the doctor should be explicitly empowered to take the initiative
of bringing life to an end.
54. It must be stressed, as all doctors who write upon this subject
do stress, that in any case where life-prolonging measures are omitted
or interrupted and the therapeutic work of the doctor is, in effect,
terminated, there is a vital need for the highest standards of care
in the closing stage of the patient's life. Professor Haemmerli
went so far as to state before the committee that in any case where
such action had been taken in his clinic, and there was, thereafter,
any suspicion of a failure in nursing care, the decision was immediately reversed.
55. Problems of the kind described could, to some extent, be avoided
by action at a more general level. It is universally acknowledged
that the major problems with respect to the indefinite prolongation
of life by artificial means have become acute only in the last twenty
years, since the development of reanimation techniques in the early
1950s and the general advance in artificial support systems since
that date. At a political level, decisions are made daily over the
allocation of scarce resources to the medical services – for example
not to provide artificial kidneys vital to the survival of a certain
number of patients – decisions which may amount to the application
of passive euthanasia to whole categories of the population at a
time. At a more individual level, general practitioners make comparable
decisions each time they decline to refer a patient to hospital.
It is clear that what harrows the public conscience is not the failure
to keep people alive by al possible means but the decision to switch
off or not to switch on a particular machine available to a particular
patient. In so far as this problem arises, we have suggested that
it may be approached in the manner outlined above, but such an approach
should be linked to a more searching examination into wider questions
of medical policy.
56. It remains to discuss the desire expressed by many persons
of sound body and mind to see instituted a (legally -valid form
of declaration by which the individual might request, in advance,
that in case of serious suffering or irreversible unconsciousness
his life should be ended. Such a proposal, which has been made in a
number of countries, most recently in Switzerland, may raise certain
difficulties, some of which were brought out in the course of a
thoughtful debate in the British House of Lords on tire Voluntary
Euthanasia Bill in 1969. The principal points made on that occasion
concerned, firstly, the question of the duration of validity of
such a declaration – there must be some way of ensuring that the
patient is not by oversight, bound by a declaration made thirty
years earlier; secondly, the question of avoidance of abuse – if
a declaration is forged or made under pressure or otherwise improperly
carried out, tire death of the patient makes redress, or even proof
of the abuse, singularly difficult. The difficulties were also highlighted
in the recent report of the Church of England On Dying Well: “Since
the patient who is a candidate for euthanasia is ex hypothesi not
in a condition to make a rational choice at the time when it would
need to be administered, consent can be secured only by a previous declaration.
The declaration has to be formally registered if abuse is to be
prevented. Something like the arrangements proposed in the 1969
Bill would seem to be essential. But these arrangements presuppose
a reasonable man who decides upon due deliberation that he wishes
euthanasia to be administered to him in certain circumstances and
remains thereafter capable of deciding with equal rationality whether
he shall adhere to his resolution or cancel it. He must be in his
right- mind when he signs the declaration (need he be when he wants
to cancel it?). In any case it will fall to someone to decide whether
he is in his right mind or not, and problems are likely to arise
at that point.” Specimen forms of declaration are annexed to this
report (Appendix IV). If such a system is to be instituted, careful
attention will have to be paid to the practical details, not only
of the drawing up and validation of the declaration, but also of
its continued validity, its application in practice, and the possibility
of withdrawal.
57. In discussing the medical viewpoint, we stated that the doctors'
desire for non-interference could put them in a dangerous situation.
Any policy on the subject of euthanasia must consider not only what
society expects of its doctors, but also how to guarantee their
legal position in carrying out these measures. On the other hand,
we take it to be of fundamental importance that no doctor may be
required to act in any way which conflicts with traditional medical
ethics. Whatever decisions society may take and by whatever legal
means doctors are to be protected in carrying them out, they must
be permissive and. not mandatory.
