Memorandum by Dr Helga Kuhse
As a researcher in the field of medically assisted
dying, I am writing in support of the Assisted Dying for the
Terminally III Bill [HL].
Before doing so, allow me to introduce myself.
I am the former Director of the Centre for Human Bioethics and
Associate Professor at Monash University. I am now semi-retired
and currently hold the position of Senior Honorary Research Fellow
at the University. Throughout my professional career, spanning
nearly 30 years, I have researched various fields within bioethics.
Ethical issues, as they arise at the end of life, have been one
of my special interest areas. I have published more than 150 professional
articles and 12 books in the field of bioethics, including many
publications on medical end-of-life decisions.
I am co-founder of the International Association
of Bioethics and have served as a Consultant on medical end-of-life
decisions and euthanasia
to the Human Rights Commission of
Australia;
to the Government of the Australian
State of Victoria;
to the Select Committee on Euthanasia
to the Legislative Assembly of the Northern Territory of Australia;
as an Expert Witness for the Northern
Territory of Australia [on its voluntary euthanasia law] before
the Supreme Court;
as a Witness appearing before the
Social Development Committee of the Parliament of South Australia.
My research into medical end-of-life decisions
and other ethical issues has been supported by competitive grants
from the Australian Research Grants Foundation, The Australian
Research Council, The National Health and Medical Research Council
and Monash University.
In the course of my thinking and research in
the area, I have reached the conclusion that there are two broad
grounds for legalizing direct help in dying to terminally ill
patients who request such help.
(1) The first reason is an ethical reason,
in the narrow sense of the term. With many others, I take the
view that it is wrong to deny a terminally ill and suffering patient
direct help in dying. To deny this right to competent, well-informed
patients is to fail to treat them as persons and as autonomous
moral agents. It shows lack of moral respect for persons as persons.
(2) The second cluster of reasons encompasses
ethical grounds in the wider sense of the term. It relates to
issues of public policy, to questions of justice and fairness,
and to control and regulation.
My attached submission will focus on Point 2.
My reason for focusing on the second, rather than the first, point
is this:
In multicultural and pluralist societies, such
as Britain or Australia, people give very different answers to
questions such as whether voluntary euthanasia, stem-cell research,
or organ donation (to give just three examples) are morally right
or wrong. Because these different answers have their source in
different value systems, they cannot be shown to be true or false,
in the ordinary sense of those terms.
This raises the question of an appropriate social
response. Given that there is fundamental disagreement about the
morality of a practice, how should modern pluralistic and liberal
societies respond to it: Should they allow or prohibit the practice,
and on what grounds?
It is now widely accepted that personal autonomy
or liberty is a very important value and that it is inappropriate
for the state to either adopt a paternalistic stance towards its
mature citizens, or to restrict their freedom through the enforcement
of a particular moral point of view. Only if one person's actions
cause harm to others is it legitimate for the state to step in,
and to bring in laws that restrict individual liberty. As John
Stuart Mill put it in his famous essay On Liberty: "The
only purpose for which power can be rightfully exercised over
any member of a civilised community, against his will, is to prevent
harm to others . . . Over himself, over his own body and mind,
the individual is sovereign."
If this standpoint is accepted, it follows that
the House of Lords, in its deliberation on the Assisted Dying
for the Terminally Ill Bill, should not so much concern itself
with the question of whether or not it is intrinsically morally
right or wrong to ever render direct help in dying, but with rather
the issue of Public Policy: whether there are good grounds for
retaining the prohibition on direct help in dying for terminally
ill patients who request such help.
INTRODUCTION
In this submission I shall focus on two clusters
of problems that may be grouped under the following two headings:
1. THE PROBLEM
WITH DRAWING
BOUNDARIES
Existing law prohibits the intentional termination
of life. This assumes that a morally relevant and/or practically
workable distinction can be drawn, in end-of-life patient-care,
between cases of the intentional termination of life, on the one
hand, and other end-of-life decisionssuch as non-treatment
and palliative care decisionsthat are tolerated by the
law.
This submission will show that the assumed distinction
between lawful and unlawful medical end-of-life decisions is marred
by serious conceptual and practical problems.
2. THE PROBLEM
WITH PROHIBITION
It is often assumed that a restrictive public
policy approach that prohibits direct or intentional help in dying
to the terminally ill who request it ("assisted dying",
as defined in the Assisted Dying for the Terminally Ill Bill),
is more protective of patients as a whole than a liberal approach.
As an earlier House of Lords Select Committee put it: "The
prohibition (of intentional killing) is the cornerstone of law
and of social relationships. It protects each of us impartially,
embodying the belief that all are equal. We do not wish that protection
to be diminished."[135]
This submission will show that empirical evidence
challenges this belief. Patients as a whole appear to be better
protected by laws that regulate assisted dying than by laws prohibiting
it.
Terminology: My discussion is limited
to competent, terminally ill patients, as defined in the Bill;
and I shall use the term "assisted dying" to refer to
both medically assisted suicide and voluntary euthanasia for the
terminally ill.[136]
1. THE PROBLEM
WITH DRAWING
BOUNDARIES
Around 40 per cent and more than 80 per cent
of deaths are preceded by a medical end-of-life decision, that
is, an action or an omission undertaken by the doctor in the knowledge
or belief that the patient will die earlier as a consequence of
that decision than she or he would if that decision were not taken.
In other words, with or without the patient's consent, doctors
are taken courses of actions that will often determine when and
how a patient dies.
Doctors who engage in these end-of-life decisions
are not necessarily acting contrary to the law. Rather, in many
countries it is lawful for doctors to implement decisions that
will shorten the patient's life. Under certain circumstances,
doctors can lawfully withhold or withdraw life-sustaining treatment,
and a consensus is evolving according to which doctors may administer
life-shortening pain of symptom control, in full knowledge of
their "double effect".
There are a number of reasons why the present
situation of permitting some but seemingly prohibiting other medical
end-of-life decisions is problematic:
Discrimination
Non-treatment decisions:
Contrary to what the House of Lords Select Committee
on Medical Ethics stated in its Report[137],
the continued prohibition of assisted dying in the practice of
medicine does not "protect [ . . . ] each of us impartially".
Rather than treat all patients impartially, and give expression
to "the belief that all are equal", laws that prohibit
assisted dying are, on the face of it, discriminatory: they allow
some patientsthose who are fortunate enough to require
life-supportto take control of their dying process, and
to shorten their suffering; they do, however, deny the same rights
or opportunities to others: those who are in the unfortunate position
of not requiring life-support, but whose suffering is just as
great, and may be greater, than that experienced by patients in
the first group.
Palliation
Modern palliative care can help many patients,
but can unfortunately not help all patients. At the end of life,
some 15-20 per cent of patients referred for palliative care may
experience intolerable pain, delirium, shortness of breath, nausea,
persistent vomiting that is refractory to the usual therapies.[138]
Some patients can be helped only by what has been termed "terminal
sedation", but terminal sedation, it has been argued, is
a form of assisted dying indistinguishable in all its relevant
features from currently prohibited forms of the intentional termination
of life[139],
with some doctors referring to it as "slow euthanasia"[140].
This leaves one with the following conclusion:
(a) If terminal sedation is rejected as a morally
licit and lawful means of aiding a patient's death, then patients
suffering refractory pain cannot be helped by available medical
care; and some of these patients may also feel discriminated against
on the grounds that in addition to not being able to refuse treatment,
they are also experiencing intolerable and unrelievable pain and
suffering.
(b) If terminal sedation is accepted as lawful,
then doctors will be permitted to intentionally end the lives
of patients "slowly" and in afor many patients,
relatives, and health care professionalsdistressing way,
but not quickly and in according with the patient's own considered
wishes, values and beliefs. As one well-known physician has put
it:
In many cases, terminal sedation amounts
to euthanasia because the sedated patient often dies from the
combination of two intentional acts by the physicianthe
induction of stupor or unconsciousness and the withholding of
food and water . . . It is the physician-created state of diminished
unconsciousness that renders the patient unable to eat, not the
patient's underlying disease.[141]
THE PROBLEM
WITH "INTENTION"
How can one be sure what doctors intend to bring
about when they engage in end-of-life decisions? Under the Principle
of Double Effect, an outwardly identical action or omission, such
as administering a potentially life-shortening dose of a palliative
agent, or the withdrawing of life-support, can be a case of impermissible
assisted dying or the intentional termination of life, depending
on what the agent intends to bring about. Since intentions are
internal mental states, often only the doctor herself will know
what she intended to do when she did what she did.
The legal presumption is that doctors administering
palliative care to dying patients, and those who withhold or withdraw
life support from the terminally ill, are not intentionally terminating
these patients' lives. But what do doctors actually intend when
they engage in end-of-life decisions?
A number of important, comparable nationwide
studiesconducted in the Netherlands, Australia and Belgiumasked
doctors about their intentions; they can shed some light on this
question. Here my main focus will be on some data from the Australian
study. The Committee may want to access the original studies.[142]
Non-treatment decisions:
The study found that of all Australian deaths
in the period, 28.6 per cent were preceded by a non-treatment
decision that in the doctors' opinion would hasten the patients'
death.
In 24.7 per cent of all deaths, the doctors
acted with the intention of shortening the patient's life; in
3.9 per cent of all deaths was there no intention to shorten the
life of the patient.
Palliation
30.9 per cent of all Australian deaths were
preceded by a palliative care decision. 24.4 per cent did not
involve an intention to hasten death; 6.5 per cent involved a
partial intention to hasten death.
The Administration of Prescription of drugs, Administered
or prescribed with the explicit intention of hastening the end-of-the
patient's life:
The study found that 5.3 per cent of all Australian
death involved this form of medically assisted dying.
Setting partially intended deaths to one side,
this means that approximately every third patient's death was
preceded by a decision that was directly intended to result in
their death.
This shows that existing laws prohibiting the
intentional termination of life are not being observed by Australian
doctors. While the prohibition of the intentional termination
of life may prevent some doctors from using fast-acting non-therapeutic
drugs, prohibition does not, and cannot, prevent doctors from
intentionally ending the lives of suffering patients in some other
"lawful" ways.
This brings us to the cluster of problem associated
with prohibition.
2. THE PROBLEM
WITH PROHIBITION
Prohibition does not work
The reason for the non-workability of the prohibition
of the intentional termination of life lies in the mainstream
legal assumption that doctors do not intend all the foreseen "natural"
consequences of their actions and omissions. Rather, existing
laws rely, at least in part, on a subjective notion of intention.
If the notion of intention where understood in a wide objective
sense, then the death resulting from each and every deliberate
medical-end-of-life decision, to the extent that it was not accidental
or inadvertent would be taken to be the intended consequence.
Since this is not the mainstream view, it entails that current
regulatory frameworks and laws are at least to some extent based
on a subjective notion of intention.
This makes for the extreme malleability and
"constructability" of medical end-of-life decisions
and with this, for the unworkability of existing laws.[143]
Existing laws can neither prevent doctors from intending what
it is impermissible to intendthe death of a suffering and
dying patient, for examplenor effectively prevent them
from implementing those intentions. A doctor who does not, for
whatever reason, wish to administer a non-therapeutic lethal drug
to aid the patient's passing, will often be able to achieve the
same result by using a therapeutic drug, by a non-treatment decision,
or both.
Lack of transparency and consent
The legal focus on the doctor's intention in
medical end-of-life decisions offers neither transparency nor
regulatory protection. Rather than encourage honesty and openness
in the doctor/patient relationship, it encourages, self-deception
and hypocrisy, and seems to lead doctors to act without their
patients' consent.
The Slippery SlopeWhich way does it slope?
It has often been claimed that the acceptance
of assisted dying [voluntary euthanasia], at the patients' request,
will lead to non-voluntary or involuntary euthanasia. The British
academic J Keown, for example, has argued that this is illustrated
by evidence emerging from the Netherlands, where doctors have
been able to practice voluntary euthanasia for a number of years:
". . . since [voluntary] euthanasia became widely tolerated
in the Netherlands, thousands of patients have had their lives
intentionally shortened without an explicit request."[144]
The claim by Keown and others that voluntary
euthanasia leads to non-voluntary euthanasia is not born out by
empirical studies. Rather, comparable international empirical
studies suggest that the acceptance assisted dying at the patient's
request, is associated with fewernot morecases of
non-voluntary euthanasia.
The Australian survey into medical end-of-life
decisions was modelled on the 1996 Dutch study.[145]
One of the central findings of the Australian study was that 3.5
per cent of all Australian deaths result from the administration
of drugs explicitly intended to end patients' lives without their
consent. The figure was five times higher than in the Netherlands,
where it was 0.8 per cent and 0.7 per cent, respectively. [The
asymmetry between the Dutch and Australian figures is also born
out by a comparable Belgium study Belgium doctors administered
drugs with the explicit intention of ending the patient's life
in 3.2 per cent of all deaths.[146]
These findings [for further important data,
please consult directly the Dutch, Australian and Belgium studies]
raise the question of why more Australian [and Belgium] than Dutch
doctors chose intentionally to end the lives of some of their
patients without the patient's consent. One plausible explanation
is that since existing laws prohibit the intentional termination
of life, doctors are reluctant to discuss medical end-of-life
decisions with their patients lest these be construed as collaboration
in the intentional termination of life.
CONCLUSION
To conclude: there appears to be good evidence
to suggest that laws prohibiting the intentional termination of
life, but permitting the withholding and withdrawing of treatment
and the administration of life-shortening palliative care, do
not prevent doctors from intentionally ending the lives of some
of their patients.
There are also good grounds for believing that
these laws are discriminatory and unjust, that they encourage
hypocrisy and lack transparency, and the unconsentedto
termination of patients' lives.
For the purposes of public policies and laws
governing medical end-of-life decisions for competent patients,
we should stop asking whether a doctor "intends" death
or merely "foresees" it, whether death comes about as
the result of an action or an omission, or as the result of administering
a slow-acting therapeutic or a quick acting non-therapeutic drug.
What is needed is a single regulatory framework
for all medical end-of-life decisions for competent patients,
a framework that does not rely on the largely unworkable notion
of intention, but on the substantive notion of respect for the
patient's autonomy, which finds expression in the procedural requirement
of consent. Under such a framework, patients and doctors would
be free to jointly decide on a mode of dying that best meets the
needs of patients. For many patients this would involve foregoing
life-sustaining treatment, and accepting palliative care. But
for some patients this would also involve direct help in dying,
through the prescription or administration of a drug.
2 August 2004
135 House of Lords, Report of the Select Committee
on Medical Ethics, Vol 1, Report, London: HMSO, 1994, p 48. Back
136
While some writers hold that the two practices are morally distinct
as far as the role of the doctor is concerned, I do not share
that view. A doctor who prescribes a lethal drug, at the patient's
request, is as morally responsible for the foreseen outcome-the
patient's death-as a doctor who, at the patient's request, administers
a lethal drug. I also believe it would be bad public policy to
limit legislation to medically assisted suicide. Not all patients
are capable of ending their own lives, and attempts at suicide
may fail. Back
137
See note 1. Back
138
See eg, N I Cherny, R K Portenoy, "Sedation in the
Management of Refractory Symptoms: Guidelines for Evaluation and
Treatment", Journal of Palliative Care:, Vol 10, (2),
1994, pp 31-38; David Orentlicher: "The Supreme Court and
Physician-Assisted Suicide-Rejecting Assisted Suicide but Embracing
Euthanasia", New England Journal of Medicine, Vol
337 (17), 23 October 1997. Back
139
See eg, Helga Kuhse: "Why Terminal Sedation is no
Solution to the Voluntary Euthanasia Debate", in T Tannsjo:
Terminal Sedation: Euthanasia in Disguise?, Kluwer, 2004. Back
140
See eg, J A Billings, D Block: "Slow euthanasia",
Journal of Palliative Carer, Vol 12(4), 1996, pp 21-30. Back
141
David Orentlicher, see footnote 4. Back
142
Helga Kuhse, Peter Singer, Peter Baume, Malcolm Clarke and Maurice
Rickard: "End-of-life decisions in Australian medical practice,
Medical Journal of Australia, Vol 166, 17 February 1977;
P J van der Mass, G van der Wal, I Havercate et al: "Euthanasia,
Physician-Assisted Suicide an d Other Medical Practices Involving
End of Life in the Netherlands, 1990-95", New England
Journal of Medicine, Vol 335, 1966, pp 1699-05. Luc Deliens,
Freddy Mortier, Johan Bilsen, et al: "End-of-life decisions
in medical practice in Flanders, Belgium: a nationwide survey",
The Lancet, Vol 356, 25 November 2000, pp 1806-11. Back
143
John Griffith: "The Regulation of Euthanasia and Related
Medical Procedures that Shorten Life in the Netherlands",
Medical Law International", Vol 1, 1994, pp 137-158. Back
144
As quoted in the Australian Senate and Constitutional Legislation
Committee report: Consideration of Legislation Referred to
the Committee-Euthanasia Laws Bill 1996, Canberra: The Parliament
of the Commonwealth of Australia, March 1997, p 103. Back
145
See footnote 142. Back
146
See footnote 142. Back
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