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


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:

    —  individual autonomy.

    —  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


 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2005