Select Committee on Assisted Dying for the Terminally Ill Bill Written Evidence


Memorandum by Raymond Hoffenberg MD PhD FRCP

  I am a retired physician and from 1983 to 1989 was President of the Royal College of Physicians of London. I have had a longstanding interest in medical ethics, was President of the Institute of Medical Ethics and spent two years as Visiting Professor of Medical Ethics in the University of Queensland. My views on the subject of assisted dying have developed after witnessing many deaths in over 40 years of clinical practice and war service in World War II in North Africa and Italy.

  In my submission I have considered possible objections to the practice of assisting those who are dying (as defined in section 1(2) of the Bill) to achieve an "easy, gentle and placid death"—a phrase used by William Munk, Harveian Librarian of the Royal College from 1857 to 1898, in a monograph on euthanasia published in 1887. Where possible, I have tried to respond to these objections.

OBJECTIONS TO ASSISTED DYING AND MY RESPONSES

Objection 1

  1.  Adopting such means to end the patient's life should not be necessary, as modern therapy can always relieve physical pain, and the hospice approach is able to provide the emotional, social and spiritual care that characterises a good death.

Response

  2.  Experienced terminal care specialists admit there is a core of patients whose pain and suffering cannot be relieved except by using extremely large doses of drugs that induce states of coma or accelerate death. Dame Cicely Saunders, the distinguished hospice specialist, estimated that pain could not be controlled in about 2 per cent of dying hospice patients (personal communication). Other experts estimate that not more than 95-98 per cent of pain in terminally ill patients can be relieved. These figures appear to be at the top end of achievement and do not reflect what patients themselves say. In surveys of hospice patients who were asked about their pain level shortly before death, 5-35 per cent rated their pain as "severe" or "unbearable"; 25 per cent said their shortness of breath was "unbearable". Even in the best of hands the figures for unrelieved pain are not insubstantial. Other symptoms such as nausea and vomiting or severe itch can also be difficult to control.

  3.  Additionally, to many patients loss of capability and independence and/or the indignity of losing control of bodily functions, including sphincters, is more frightening and upsetting than the prospect of pain; these problems are not easily palliated. (As an extreme example I would refer to the case of Mrs Lilian Boyes, a dying patient to whom Dr Nigel Cox administered a fatal dose of intravenous potassium chloride, an act that brought him before the General Medical Council. She was in extreme pain unresponsive to massive doses of morphine, possibly due to the phenomenon of paradoxical pain, she had ulcers and abscesses and gangrene that extended through her rectum into bone; she was doubly incontinent and blind. Even if it had been possible to control her pain, her condition was so distressing that she and her two loving sons begged Dr Cox to put her out of her misery).

  4.  The reality of the situation is that a majority of dying patients do not have access to optimal terminal care. Richard Smith, retiring editor of the British Medical Journal, has written "For the minority who die under the care of palliative teams it is probably good, but there is a suspicion that for the majority who die in acute hospitals or nursing homes the experience is bad". For many of those who die at home it is almost certainly worse.

Objection 2

  5.  Knowledge that a doctor practises "euthanasia" might undermine the trust that patients have in doctors. They might be fearful of what will be done to them in the last illness.

Response

  6.  Evidence from surveys carried out in places in which euthanasia is permitted shows that this has not happened. On the contrary, in the Netherlands the percentage of people in favour of continuing the practice has increased steadily over the years. In Britain the number in favour of euthanasia rose from about 50 per cent in the 1960s to about 80 per cent after the Cox and Bland cases in the 1990s, suggesting that the public actually approved of the role of doctors in assisted dying. Surveys of elderly people in Australia confirm this view.

Objection 3

  7.  Vulnerable members of society will be placed at risk, eg the disabled, the elderly and ethnic or other minorities. A voluntary request for assistance in dying will be replaced by involuntary disposal of unwanted people. Various forms of pressure might be applied to people who want to live, especially the elderly who might be induced to request early death by uncaring members of the family or others.

Response

  8.  In a civilised society it is highly unlikely that a doctor, other than a pervert or a criminal (Shipman), would acquiesce in the killing of individuals or groups, simply to get rid of them.

  9.   It is probably impossible completely to eliminate inducements or pressure but the safeguards outlined in the Bill, if followed meticulously, should all but do so. (There is an analogy here in the transplantation field in which free voluntary consent to organ donation is regarded as critical, but undue pressure or coercion is equally hard to eliminate, except through the exercise of close scrutiny and maximal care).

  10.  This objection exploits the "slippery slope" argument. The flaw in the argument is the following: If practice A (acceding to voluntary requests) is accepted or desired, but practice B (involuntary disposal of people) is not, it makes no sense to ban A simply to prevent B. The right action is to retain A and outlaw B, imposing stringent scrutiny and appropriate punishment for those who transgress the boundary.

Objection 4

  11.  There is a risk of mistakes in diagnosis or prognosis. There are occasional examples of patients believed to be terminally ill who then recover and return to normal life.

Response

  12.  It is impossible completely to exclude the possibility of medical error. The likelihood of error would be greatly reduced by the provisions of the Bill, which require confirmation of the diagnosis and prognosis by another physician and a specialist in palliative care. Close observation through the 14 day period should help to minimise the chance of error. In contemplating the possibility of assisted dying doctors could be expected to exercise even greater care to avoid errors.

Objection 5

  13.  It may be difficult to determine the mental competence of the individual, on which the validity of the request for assistance is dependent. It is known that this might fluctuate in patients with a terminal illness.

Response

  14.  Competence has to be attested formally by two doctors, a solicitor and the witness. In addition, in most cases there will be family members who can provide information about the mental state of the patient. If there is any doubt on the part of any of these individuals, a psychiatric referral is mandatory.

Further comments

  15.  In present day medical ethics paramount importance is accorded to the concept of patient autonomy. Competent patients may decide whether or not to accept treatment, and may reject it even if it is thought to be lifesaving. They have power to make decisions about all aspects of their care but not to demand treatment that is regarded by their doctors as harmful or valueless. Presumably, it is under this rubric that patients with terminal illness are denied assistance in dying. They have the right, if they wish, to forgo all treatment including the ingestion of food and water and so to die from dehydration and inanition. Thus, they may elect to die a slow and distressing death but, having made the decision to end their lives, they are denied the means to achieve one that is quicker and more expeditious. Knowing that they are suffering from a terminal illness, they are denied autonomy—the right to choose how and when they would like to die.

  16.  The provision of the means to end their own lives or the knowledge that their wish to do so will be carried out at a time of their choosing, if their suffering becomes intolerable, can be a great comfort to those who fear the dying process more than death itself. Experience shows that patients who are given the means to end their lives frequently do not do so, but they are reassured by the knowledge that they have the means to do so if necessary.

  17.  It is usually agreed that there is very little ethical (as opposed to legal) distinction between allowing patients to die by withholding or withdrawing treatment and taking a more active step to end their lives. In all cases the intent is the same and the outcome is the same; only the means of achieving the end is different. Following the Bland case, the House of Lords gave consent in certain circumstances for the withdrawal of food and water from patients in a persistent vegetative state. Death follows about 10 days after withdrawal. During this time the relatives have to watch the slow inexorable extinction of life and the nursing staff have to wash, turn, toilet and generally tend what they know to be an incipient corpse. Would it not be more humane for the family and the nursing staff to expedite the process of dying?

  18.  There is little doubt that many doctors—good caring doctors—do assist the process of dying. They do so under the guise of the double effect principle—using large doses of a drug in order to relieve symptoms in the knowledge that this might shorten life. In many cases, I suspect, there is an implicit intent to end the patient's misery by doing so. If this intent were overt, they would expose themselves to serious legal and professional condemnation. Had Dr Cox been less ingenuous he might have chosen some other substance that would have hastened death and pleaded that he had acted under the principle of double effect without making his true intent known. A decision to allow assisted dying as outlined in the Bill would obviate a moral and legal contrivance, behind which many doctors take shelter.    

  19.  It is clear from many studies that doctors and other health professionals have little comprehension of the real views of the public with regard to end-of-life decisions. In a Queensland survey, in which I took part some year ago:

    (i)  57 per cent of general practitioners believed that patients would prefer to leave such decisions to their doctor; this view was held by only 34 per cent of the community;

    (ii)  84 per cent of doctors felt that patients do not like to think about death and dying; only 31 per cent of the community shared this view;

    (iii)  62 per cent of patients were in favour of assisted dying compared to 30 per cent of doctors,

    (iv)  65 per cent of patients felt the law should be changed to allow the process.

  I suspect that a British public would respond in a similar way.

  20.  I appreciate that many people object to assisted dying on religious grounds. It stands to reason that there should be a "conscience clause" that permits doctors who have this belief to recuse themselves. No doctor should be obliged to carry out any measure that is contrary to a firmly held belief or principle.

August 2004


 
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