Memorandum by Dr Richard Scheffer
Dr Richard Scheffer has been a consultant in
Palliative Medicine and medical director of an independent hospice
for 16 years. He read, and then taught, social work at the University
of Natal, Durban, South Africa in the 1970s before reading medicine
at the University of Cape Town. He trained in Clinical Oncology
at King Edward VIII Hospital, Durban, South Africa, and Velindre
Hospital, Cardiff before going to St Christopher's Hospice in
London to pursue a career in Palliative Medicine. He is involved
in both undergraduate and post-graduate education, is chairman
of the local Palliative Care Network and is a member of the National
Council for Hospices and Specialist Palliative Care.
This evidence is submitted in his personal capacity
and does not necessarily reflect the views of his employer or
any of the committees on which he serves.
1. KEY RECOMMENDATIONS:
1.1 Assisted dying/euthanasia should be
a legal option to those terminally ill patients in the United
Kingdom who wish to chose such an option (but this should not
detract from the need to offer all patients facing life threatening
illness a high quality palliative care service).
1.2 Assisted dying/euthanasia should be
limited to individuals suffering from a life-threatening disease
which is beyond cure.
1.3 The mechanism by which assisted dying
is achieved should be by the establishment of independent "assistants"
to prescribe and/or administer the necessary drugs. The medical
and nursing professions should be specifically excluded
from the process (beyond the confirmation of diagnosis and
prognosis, the exclusion of depression and the discussion of the
options of care).
1.4 The Bill in its current form should
therefore be rejected.
2. INTRODUCTION
2.1 In considering the issue of assisted
dying or euthanasia there are three questions that our society
needs to address collectively:
1. Do we want to alter the legal code to
allow individuals to choose to be assisted to die?
2. If so, in what circumstances should an
individual be able to choose this option?
3. What mechanism should be put in place
to effect their decision?
2.2 This is a personal paper. My view on
euthanasia has changed over the years from being implacably opposed
to wanting to find a way to introduce it for the few without compromising
the care we offer for the majority. My thoughts are obviously
influenced by my clinical experience of 25 years in medicine,
most of which have been in oncology and palliative care. But there
are other influences too:
I trained as a social worker, before
I read medicine.
I have a Christian faith.
I was born and brought up in South
Africa during the apartheid years. I saw there how the legal process
could be warped to manipulate individuals and society. I am concerned
that this should not be possible in well meaning changes to the
law over this issue.
2.3 Definitions: Much has been written
about the question of euthanasia/assisted dying. It provokes strong
reactions from both those who advocate it and those who oppose
it. Misunderstanding in these circumstances is common. To try
to prevent this the following definitions will be used:
"Euthanasia/assisted dying" is
the act of deliberately/actively ending the life of an individual
at their stated request. (The phrase "assisted dying"
will be used in this paper.)
"The individual" is the person
requesting/experiencing euthanasia or assisted dying.
"The Assistant" is the person
providing/administering the drugs to the individual to assist
them to die. (This is a new proposal.)
3. DO WE,
AS A
SOCIETY, WANT
TO ALTER
THE LEGAL
CODE TO
ALLOW INDIVIDUALS
TO CHOOSE
TO BE
ASSISTED TO
DIE?
3.1 There can only be a "yes"
or "no" answer to this question.
I do not propose in this paper to rehearse the
arguments for and against assisted dying in detail.
Those who argue "yes" point to:
the need to be humane in the prevention
and alleviation of human suffering.
other options, for example palliative
care, cannot alleviate all suffering.
some people, however small their
number may be, want to have control over this part of their life.
Those who argue "no" do so because:
they see each human life as special
(the "sanctity of life" argument).
they express concern that vulnerable
members of society will feel pressurised into accepting assisted
dying to reduce costs/concern to their family.
it is not possible to alleviate all
suffering in society.
other options, for example palliative
care, can alleviate suffering and improve quality of life.
3.2 I have come to believe that the option
of assisted dying should be available to those who want it. I
have changed my opinion on this because over the years I have
cared for a small number of people for whom this would have been
the only humane option. The situations in which I would have felt
it right to allow a patient to be assisted in their dying have
always been related to the indignity and frustration of the experience
of the illness from which they suffered. They have not necessarily
had physical suffering, in the sense of their having unacceptable
pain or other symptoms, although the disease had altered their
physical being eg in making them weak, or unable to speak, or
incontinent, etc.
3.3 When, as a doctor, I face a patient
with intolerable physical suffering, which cannot be controlled
without their being sedated, I can, and do, offer to increase
their analgesia and/or tranquillisers, if that is their wish,
even if that sedates them, so that they are no longer aware of
their suffering. This treatment option is more difficult to justify
and apply to someone who is frustrated by advancing frailty and
indignity. I am concerned that to extend this treatment possibility
to such patients would result in more abuse than would a formal
change in the law to allow assisted dying in specific circumstances.
3.4 There is no reason to link the decision
of an individual asking for assisted dying to their experiencing
"unbearable suffering". The latter is a subjective and
indefinable term and using it further complicates an already complicated
situation. An individual making a personal choice to ask for assisted
dying should be the only criterion necessary.
3.5 The number of individuals in our society,
who wish to have the control over this part of their lives, is
difficult to ascertain. The experience of palliative care physicians
is twofold. Firstly, that a remarkably small number of patients
actively ask for assisted dying. And, secondly, the vast majority
of those who do ask, usually do so in the context of unrelieved
suffering that, once relieved, alleviates their desire to die.
The counter argument to this is that it is possible that patients
do not raise the issue of assisted dying with palliative care
physicians as this is not seen to be acceptable. From other countries,
however, and from our experience in the United Kingdom mainly
with cancer sufferers, it seems unlikely that the number requesting
assisted dying would exceed 5 per cent of persons facing life-threatening
disease.
3.6 While accepting that I do not wish to
deny this 5 per cent of patients their right to choose assisted
dying it is important not to lose sight of the rights and needs
of the other 95 per cent of the population. It is essential to
continue to offer, and improve where possible, a high quality
palliative care service. In changing my opinion to accepting the
need for assisted dying I remain concerned about two issues:
(a) how to prevent the relationship
of trust between doctor and patient (especially in the 95 per
cent) from being damaged by this change in society.
(b) how to prevent vulnerable individuals
feeling pressurised into feeling they must choose this option.
(These issues are addressed below.)
4. UNDER WHAT
CIRCUMSTANCES SHOULD
AN INDIVIDUAL
BE ALLOWED
TO CHOOSE
THE OPTION
OF ASSISTED
DYING?
4.1 There are four groups of individuals
who may wish to explore an option of assisted dying. These are:
(i) those facing a life-threatening illness
with a relatively short prognosis. Examples would be cancer or
motor neurone disease.
(ii) those facing a life threatening illness
which might/is likely to limit their life expectancy but not necessarily
in the short term, but which they perceive limits their quality
of life. Examples would be:
those suffering slowly progressive,
neuro-degenerative conditions, eg multiple sclerosis, Parkinson's
disease, Alzheimer's disease;
those with other end stage disease,
eg cardiac or lung failure, advancing peripheral vascular disease.
(iii) those facing severe disability, either
congenital or acquired, which may or may not limit their life
expectancy, but which they perceive limits their quality of life.
Examples would be:
those with severe congenital physical
disability;
victims of severe accidents, eg spinal
injuries, burns, etc.
(iv) the fourth group would be all persons
who do not fit into one of the above three groups but who consider
their quality of life, for any other reason, unacceptable.
4.2 If the concept of autonomy is going
to be expanded to include the right to choose assisted dying,
then it is logical, ethically, that all four of these groups of
individuals should be offered this option. However, it is important
to recognise that there is opposition to assisted dying for disabled
persons amongst disability rights groups and it is unlikely that
our society would wish to give the assisted dying option to anybody
who simply fell into group (iv). It is likely therefore, that
if we as a society decide to agree to assisted dying, we will
want to limit this option to group (i) above, namely those who
are facing a life threatening condition with a relatively short
prognosis, and possibly group (ii). It should be recognised, however,
that there may be problems in defining the limits of group (ii).
4.3 There are two important issues, however,
that must be considered whatever the definition of the patient
group.
(i) it is essential that depression be excluded.
It would be unacceptable to act on requests for assisted death
from people suffering from depression, when such requests would
be changed by treatment of the depression.
(ii) it is also important that we as a society
recognise that many in our society feel very vulnerable, especially
when ill, and it is important not to create a situation where
the "right to die" becomes a "duty to die"
to prevent cost or concern to relatives. It is difficult to see
how this can be completely overcome. The only safeguards would
be making sure:
that an adequate quality palliative
care service is available to all, and
that all care options are explicit
and therefore able to be openly and honestly considered. (cf para
3.6 b).
5. BY WHAT
MECHANISM SHOULD
ASSISTED DYING
BE ACHIEVED?
5.1 This is the question that is of particular
interest and concern for me. I would argue that it is essential
to make the medical and nursing professions independent of the
actual administration of the medication used in the assisted dying
process. If doctors and nurses are the agents of assisted dying
this will radically change the relationship of trust with many
of the 95 per cent of patients who do not wish to be assisted
to die. (cf para 3.6 a)
5.2 Palliative care physicians already meet
many patients who are reluctant to be admitted to a hospice for
fear that they will not be given adequate care and just allowed
to die or, even worse, have their demise hastened. Many of the
95 per cent of patients who would not request assisted dying would
be very frightened by the idea that this may be done to them without
their request. Although a change in the law would not legally
change the status of an individual not choosing assisted dying
it is likely that the change in the law will make many in the
95 per cent group more frightened of the medical profession. It
is essential the relationship of trust between doctor and patient
is not eroded.
5.3 If we accept that assisted dying should
be possible then this should be achieved by the creation of a
specific role in our society of "the assistant" in assisted
dying who would be a technically trained person able to prescribe
and administer the necessary drugs.
5.4 There are two possibilities:
(i) the provision of medication taken orally
by the individual, at a time, and in a setting of their choosing
(this may or may not be in the presence of the Assistant); and
(ii) the administration, by the assistant,
of an injection, either directly into a vein or under the skin,
that will sedate and then cause a cessation in breathing and consequently
death.
5.5 Each of these options has advantages
and disadvantages and it is likely that both should be offered
to all individuals requesting assisted dying.
(i) the provision of oral medication to be
taken by the individual at a time of their choosing has the obvious
advantage of giving the control and the timing of the act entirely
to the individual. The major disadvantage, however, is that oral
drugs may be poorly absorbed. Consequently doses needed to bring
death will vary and death may not be instant, which may cause
added stress to relatives or, indeed, the individual, should they
recover consciousness; and
(ii) the administration of an injection by
an assistant has the advantage that death is assured and instant
but the disadvantage is that the individual and Assistant must
be brought together. This will involve some planning and loss
of control on the part of the individual.
6. A POSSIBLE
PROCESS
6.1 A possible process for assisted dying
would be:
1. The individual expresses a wish for assisted
dying to their usual medical carer and confirms this in writing
by completion of a specific form.
2. The diagnosis and likely prognosis are
confirmed by the consultant under whose care the diagnosis and
treatment of the disease have occurred.
3. The options for care are discussed with
the individual by a palliative care physician or specialist nurse.
This would be to specifically discuss the palliative care option
or to consider assisted dying. This may not be achieved in one
meeting.
4. A diagnosis of clinical depression is
specifically excluded by a psychiatrist.
5. The family of the individual are involved
in the discussions.
6. The individual (and their family) is
referred to the assisted dying clinic where the assistant will
explain to the individual the options of:
(a) having oral medication made available
to them to use at a time and place of their choice; or
(b) having an injection, at a time of their
choice, administered by the assistant.
7. There is a "cooling off" period.
8. The person is assisted to die.
6.2 It is recognised that there are many
practical issues that would need clarification in such a pathway.
It is included here to facilitate understanding of how a system
using assistants and assisted dying clinics could operate.
7. SUMMARY
We should as a society:
accept that some people will want
to control the timing and mechanism of their death and legislate
accordingly;
explore the ways of defining the
limits of the group to whom this option should be available;
exclude the medical and nursing professionals
from the actual process of assisting dying as their involvement
risks compromising the relationship of trust between professional
and patient;
create the mechanism by which people
can be assisted to die if that is their choice;
reject the Bill in its current form
but ask the Select Committee to advise on how this matter can
be taken forward with suitable safeguards; and
recognise that no change in the law
will solve all problems and in fact changes in the law will bring
new challenges, to individuals, the professions and to organisations
such as hospices.
August 2004
|