Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence


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

    (a)  "terminally ill; or

    (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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