Memorandum by Friends at The End
1. THE FACTS
OF DEATH
1.1 The dying process often means a lot
of pain and distress to ourselves and to those around us. This
escapes general attention not only because death today tends to
be a very private matter, but because in popular films and conventional
literature people are depicted as dying serenely in bed surrounded
by their loved ones, or suddenly as if felled by a blow.
1.2 The reality is often very different.
Unless a massive stroke or other sudden event carries us off,
we are most likely to suffer from a variety of extremely unpleasant
symptoms which are repellent to ourselves and to others.
1.3 Within a medical framework death is
often seen as a failure by medical practitioners and a struggle
goes on to postpone death as long as possible whatever the embarrassment
and suffering.
1.4 Often sedation is used instead of painkillers
and even hospices do not always understand that the patient would
prefer not to endure the last hours, days, weeks, or even months
provided by modern medicine.
1.5 Accounts of the deaths of Jo Shearer
and Shirley Nolan are provided in Appendix 1.
2. FRIENDS AT
THE END
Friends at the End is an organisation committed
to promoting knowledge about the facts of death and end-of-life
choices. It is an educational and caring society which maintains
that each of us is entitled to personal choice and its members
range in age from as young as 22 to some over 90 years old.
2.1 Its purposes
2.1.1 In terms of its Constitution
(Appendix 2) its principal purposes are:—
(a) to promote knowledge about end-of-life
choices and dignified death; and
(b) to support those concerned about end-of-life
choices and dignified death and to support those suffering from
distress, especially that associated with the end of life; and
(c) to advance medical education relevant
to the processes of death and terminal illnesses; and
(d) in furtherance thereof to fund research
into the causes, cures and prevention of distress in the dying
and those caring for them and to publicly disseminate the outcome
of such research; and
(e) to act along with others in pursuit of
the above, and its subsidiary purposes are all things reasonably
conceived to bring about or advance the foregoing.
2.2 Its activities
2.2.1 Friends at the End meet in Glasgow
on Saturday afternoons three times a year with a wide variety
of speakers, sometimes doctors, nurses, health care professionals,
sometimes speakers with a personal experience to relate. The gatherings
are very friendly and relaxed, and question-time is always lively.
We have a Newsletter full of topical information of interest and
full reports of our meetings and activities. Readers are welcome
to write about any issues surrounding a good and peaceful death.
2.2.2 We provide speakers for secondary
school classes in ethics and for any other gatherings.
2.2.3 Information is provided on many
topics including
2.2.3.1 Living Wills (also called Advance
Directives) with sample forms (See Appendix 3).
2.2.3.2 Scottish Welfare Powers of Attorney
(See Appendix 4).
2.2.3.3 Sample Do Not Attempt Resuscitation
forms.
2.2.3.4 NHS Trusts' policies on Living Wills
and Do Not Attempt Resuscitation instructions.
2.2.4 We provide an advice and counselling
service for those suffering distress caring for the dying.
3. ASSISTED SUICIDE
AND VOLUNTARY
EUTHANASIA: ARGUMENTS
AGAINST AND
FOR IT
3.1 Background
3.1.1 Suicide has never been illegal
in Scotland and has been allowed in the rest of the UK since 1961,
but it is a crime for anyone else to be involved. This means that
if you are too ill or disabled to take your own life, the person
who helps you can be charged with murder.
3.1.2 Some people suffer greatly before
the end comes. Care for the dying has improved a lot in recent
years, but medical technology has also enabled life to be extended
even when the person is past being able to enjoy it. We believe
that we should be able to ask for help when we feel we have suffered
enough.
3.1.3 Opposition to voluntary euthanasia
comes mainly from those with religious convictions who say they
believe life is a gift from God and is therefore sacred. Other
arguments are used to support these views but the fundamental
one is the "sanctity of life".
3.2 Arguments against assisted suicide and
voluntary euthanasia
3.2.1 THE SANCTITY OF LIFE This phrase
has little meaning unless both "sanctity" and "life"
are defined. Sanctity means "sacredness", something
that must not be interfered with, but to us life is a continuum.
It starts with the egg and the sperm which are biologically programmed
to be lost in their hundreds and millions throughout the lifetime
of the individual; on to the embryo; the foetus; the infant; the
child; the man and woman, to the "lean and slippered pantaloon,
sans eyes, sans teeth, sans everything"; as Shakespeare so
graphically put it. Brainless old age is what we all fear but
it is possible to lose one's "biographical life", one's
individual personality, in childhood or adolescence as Tony Bland
did. He lay in a Persistent Vegetative State (his brain was so
damaged that he was always in a coma) as a result of the Hillsborough
football disaster. The House of Lords decided that his biological
life could be ended—four years after the tragedy.
3.2.2 UNNECESSARY AND UNNATURAL Palliative
care is so good that life can end "naturally" with the
minimum of suffering. This is not true as will be shown in the
"Arguments For". Some people die in intensive care,
being fed intravenously, attached to a ventilator with tubes coming
out of every orifice. How can this be regarded as natural?
3.2.3 THE SLIPPERY SLOPE Once euthanasia
is legalised it will open the door to abuse and will allow unscrupulous
relatives to put the elderly and infirm to death, like Hitler
did. Old people will feel pressurised to ask for euthanasia so
that they are not a burden. Evidence for this view is often misquoted:
a survey of deaths in the Netherlands in 1991 (the Remmelink Report)
showed that 2.5 per cent of all deaths were by euthanasia; a second
(1996) and third Report (2001) came up with the same 2.5 per cent
figure.
3.2.4 DOCTORS MUST PRESERVE LIFE They
have sworn the Hippocratic oath—the trust between them and
their patients would be destroyed if they were allowed to perform
euthanasia or Physician-Assisted-Suicide (PAS). Few doctors practising
today have been asked to swear this ancient Greek oath, but they
do have a professional duty to care for their patients to the
best of their ability with compassion and skill.
3.3 Arguments for assisted suicide and voluntary
euthanasia
3.3.1 CHOICE We can now choose our
partner, when to have a child, and whether to continue with an
unplanned pregnancy. We have the right to accept, or refuse, medical
treatment. We should have the same right to decide when and where
to die. The present law is based on traditional beliefs which
are no longer held by many UK citizens and should not be imposed
on those who do not share them.
3.3.2 TERMINAL SUFFERING Even with
the best palliative care, between 5 per cent and 10 per cent of
those dying cannot have their suffering adequately relieved. Pain
is often a major problem, but not the only one—nausea, vomiting,
coughing, breathlessness, incontinence, and other horrible symptoms
which can be difficult to treat. Severe weakness and total dependence
on others are inevitable and many people find this the most distressing
thing to bear. The final stages are often treated by increasing
the dosage of pain-killers such as morphine and heroin and also
by giving sedatives which induce sleep which slides into coma
and death. This is known as "terminal sedation" and
in most cases the patient takes no part in the decision to use
it.
3.3.3 DOCTORS' DUTY OF CARE Those who
truly want to do their best for their patients by responding to
a request to end their suffering are forbidden by law from doing
so. Many surveys of British doctors have shown that some already
help their patients to die and risk their professional career
by doing so. Doctors are also able to give pain-killers in such
high doses that people die more quickly. This is known as the
"double effect"—if the intention is to relieve
suffering, but the side effect is death.
3.3.4 PUBLIC OPINION Eight-one per
cent of the public think that a person suffering unbearably from
a terminal illness should be allowed by law to have medical help
to die if that is what he or she wants (National Opinion Poll
2002).
3.3.5 WORLD OPINION Euthanasia has
been accepted in the Netherlands for over 20 years and a law was
passed in 2000 to regulate this. Belgium passed a similar law
in 2001. In the US, one State, Oregon, has had a Physician Assisted
Suicide law since 1998.
4. SCOTTISH LEGISLATION
4.1 LEGAL BACKGROUND Neither suicide nor
attempted suicide are crimes in Scotland and the society believes
that a person will only be criminally liable if he did something
to encourage another person to put his or her intention into effect.
Nevertheless, it is possible that a person who urges another to
commit suicide or furnishes the means to do so could be guilty
at common law of recklessly providing the means of self destruction
unless the act of the victim him or herself in taking the final
step is considered to break the chain of causation.
4.2 POWERS OF ATTORNEY have a long history
of use in Scotland. Until comparatively recently, such mandates
fell if their granters became incapax, and until the implementation
of the Law Reform (Miscellaneous Provisions) (Scotland) Act 1990
Scots law recognised no concept of an "enduring Power of
Attorney" (to use a term of English law) and if you, as the
granter of a Power of Attorney, reached the stage where you could
no longer understand the management of your affairs, the authority
which you had granted to other people to assist you fell on the
grounds that the authority could only subsist while you actively
wished it to be in place.
4.2.1 The 1990 Act enabled attorneyships
to be exercised notwithstanding the subsequent incapacity of the
granter, and at that point people began to confer upon their attorneys
powers to deal with their welfare in the event of them losing
capacity.
4.2.2 The Adults with Incapacity (Scotland)
Act 2000 significantly revised the law relating to Powers of Attorney
and created a new form of mandate (available from April 2001)
known as a Welfare Power of Attorney. It also created a new public
authority called the Office of the Public Guardian to supervise
(among other things) the exercise of Welfare Powers of Attorney
created by the Act and the Continuing Powers of Attorney which
the Act also created, in the process ending the possibility of
granting Powers of Attorney intended to remain in force notwithstanding
subsequent incapacity, which now can only be granted in terms
of the Act. All Powers of Attorney governed by the Act must be
registered with the Public Guardian in order to become effective.
4.2.3 Those acting as attorneys for
adults with incapacity are required to do so in accordance with
the following principles:—
(i) The intervention must benefit the incapax
and not reasonably be achievable without the intervention.
(ii) The intervention must represent the
least restrictive option available, given the condition of the
incapax.
(iii) Account must be taken of the following
views:—
(a) The past and present feelings
of the incapax.
(b) The nearest relative and primary
carer of the incapax, so far as reasonable and practical.
(c) Any attorney or other person
who has powers relating to the act proposed.
(d) Anyone whom the Sheriff (the
English equivalent might be the County Court Judge) directs should
be consulted.
(e) Any other person who appears
to the person seeking to intervene to have an interest.
4.2.4 There is a code of practice for
Welfare and Continuing Attorneys issued under the authority of
Section 13 of the Act.
4.2.5 Apart from granting, withholding,
and withholding consent to medical and dental treatment, areas
commonly covered by a Welfare Power of Attorney would include:—
(a) Acting to ensure the comfort, privacy,
heating and adequate ventilation of the granter's accommodation.
(b) Ensuring that carers assisted the granter
to dress independently.
(c) To take decisions over the adequacy and
dietary requirements of the granter's meals, cleaning arrangements
etc.
(d) The activities which the granter could
carry out at a day-centre or elsewhere, what hobbies or interests
could continue to be provided for the granter, and the possibility
of holidays.
(e) Provision for visits by families and
friends.
(f) Assessing and reacting to the diagnosis,
likely development and longer term prognosis of any illnesses.
(g) Ensuring that the granter has reasonable
amounts of personal dignity and privacy.
(h) Authority to liaise with whoever has
financial authority to act for the granter.
(i) Authority to liaise with the local authority
and others in connection with services such as community care.
4.2.6 The legislation clearly recognises
that a person who has granted a Welfare Power of Attorney is entitled
to be able to rely upon those to whom the power has been granted
to exercise it, which includes the refusal and withholding of
medical treatment.
4.2.7 A Welfare Attorney is in a much
stronger position to enforce the granter's wishes than a health
care proxy or other mandatory.
4.3 PROSPECTIVE LEGISLATION—The Assisted
Suicide Bill
4.3.1 More or less contemporaneously
with the studies which gave birth to the Adults with Incapacity
(Scotland) Act 2000 Professor Sheila McLean of the Institute of
Law & Ethics in Medicine and Professor Joseph Thomson of the
Faculty at Law in the University at Glasgow carried out a study
into the possibility of legislation, in the course of which was
prepared the outline provisions for legislation contained in Appendix
6 as the Assisted Suicide Bill.
4.3.2 The Bill provides immunity from
prosecution for a registered medical practitioner who assists
a person to die after that person has made an oral or written
request (which may be included in an advance directive or "Living
Will"), when the person concerned is
(b) in extreme physical or mental suffering."
4.3.3 The authors of the draft Bill
(Appendix 6) and Professor McLean in particular, have an international
reputation and the Bill is masterfully laconic; it recognises
that Parliament will wish to debate the fine details, outcome
and safeguards—at the time it was produced, Welfare Powers
of Attorney were not yet available.
5. GUIDELINES
IN THE
NETHERLANDS
The Society understands that the following guidelines
have been followed in the Netherlands for over 20 years:—
(i) There must be unbearable physical
or mental suffering.
(ii) Those suffering unbearably do
not require to be terminally ill in order to benefit.
(iii) The suffering and the desire
to die must be lasting.
(iv) It must be the patient's own decision.
(v) The patient must have a clear understanding
of his or her condition and prognosis, be capable of assessing
the options, and have done so.
(vi) There must be no other acceptable
solution.
(vii) The time and way the patient
dies must not cause avoidable misery to others (eg close relatives
should be informed and the patient's affairs be put in order).
(viii) The practitioner involved must
consult another professional.
(ix) A medical practitioner must be
involved in prescribing the right drugs.
(x) The decision process and the actual
treatment must be carried out with the utmost care.
6. SUPPORT FOR
THE BILL
The Society welcomes the introduction of a humanitarian
measure addressing the express wishes of over 4/5ths of the United
Kingdom's population. Dr Michael Irwin, a member of the Society,
helped draft the original Bill when Chairman of the Voluntary
Euthanasia Society of England and Wales.
It wishes to draw the attention of the Committee
to the following points:—
(1) The current Bill requires the patient
to be terminally ill—this seems inhumanely narrow when compared
to the Dutch guidelines.
(2) Only competent adults will benefit from
the proposed legislation. This raises interesting questions in
relation to the treatment of young people. It also would appear
to disenfranchise those who have granted advance directives or
Living Wills in order to provide against such an eventuality
as their losing the capacity to make informed decisions, and also
those who have granted Welfare Powers of Attorney under the Law
of Scotland.
(3) The detailed formalities surrounding
the type of declaration proposed in the Bill are complicated and
could easily be inadvertently infringed.
(4) Although common in some jurisdictions,
such as Spain, it may be felt in this country that a solicitor
(or indeed, any other lay person) is not an appropriate judge
of medical competence.
(5) It may be difficult to obtain witnesses.
(6) There are varying degrees of mental
capacity and mental competence. For instance, a person may in
general be incapable of giving instructions for the management
of his or her quotidian affairs, but know perfectly well that
a particular child or adviser is the person whom he or she would
wish to conduct them, and, similarly, may be in no doubt of his
or her desire to bring terminal closure to a period of unbearable
suffering. The Society would therefore suggest that wherever the
concept of mental competency is introduced, it be qualified as
competency to take a decision of this type.
It is suggested that the Bill take account of
the Scottish Ministers as well as the Secretary of State in areas
where it is proposed that Regulations will be made.
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