Peter Lapsley: Dignifying death

Peter LapsleyWere I to develop motor neurone disease, or some comparably progressive, incurable, and terminal condition, I would wish to be informed of the diagnosis, perhaps to have the opportunity of a second opinion, to be given a carefully considered and evidence-based prognosis with timelines, however approximate, and then, having put my affairs in order and at a time of my choosing, to be allowed to depart this life at home and as quickly, quietly, and painlessly as possible.

Much of my enjoyment of life comes from being active. I will not see my muscles waste away and increasing weakness inevitably cause loss of the use of my limbs until I am unable to move by myself. Nor will I sit by as I become breathless, my speech slurs, and swallowing becomes more and more difficult. I see no reason why I should be expected passively to accept the removal of all pleasure from my life by a terminal disease.

I have been responsible for every aspect of my life since my late teens and believe strongly that I have the right to decide when it should end. I am not a religious person, so no amount of religious argument will change my mind. I am essentially non-partisan politically; I have no wish to be told by politicians of any persuasion whether or not I may take my own life – in my view, this is a deeply personal social issue, not a political one. Nor am I much interested in the protestations of palliative care physicians, who say they might enable me to live out my allotted span peacefully and painlessly, however meaningless it may have become to me. They are doctors, and almost by definition many doctors see their sole role as having to do with curing the sick and preserving life. It is for none of these people – clergymen, politicians, or doctors – to tell me how and when my life should end. Unless that end comes naturally and unexpectedly, my life is my own, and the decision to end it is mine alone to take.

Nor am I prepared to traipse to Switzerland or some other country where assisted suicide is allowed in order to die in grim, unfamiliar, quasi-clinical surroundings. For governments to allow that but to refuse to allow clinician-assisted releases from life in their own countries is simply to fudge the issue, a cop-out, and a pretty grubby one at that.

This is not a judgement on those living with disability or terminal illness, but rather a personal view on how I wish to die, when my death becomes inevitable. A death I wish to be able to control on my terms.

In order to ensure a quick, quiet, and painless death at home I shall require the help of a doctor. There is a welcome and growing number of doctors who share my view and whom I admire and respect, just as I respect the views of those who, for various reasons, prefer not to join them (any change in the law should include conscientious objection provisions). From the doctor concerned I would require two things – the wherewithal to effect my escape and sound, dispassionate advice on the most efficient way to achieve it.

All of which is why I so warmly welcome the formation of Healthcare Professionals for Assisted Dying (HPAD), the members of which support the campaign by Dignity in Dying for greater patient choice at the end of life. HPAD now has over 500 members and it is growing steadily.

HPAD believes that medical professional bodies such as the BMA should not oppose change intended to put the wishes of individual patients first. Its members see healthcare professionals’ duty of care to their patients extending to ensuring that people should not have to suffer against their wishes at the end of life.

Healthcare professionals can indirectly hasten death already, of course, through the withdrawal or withholding of treatment or through the principle of “double effect,” but direct and deliberate assistance to die, at the patient’s request, is illegal. HPAD believes the law must be changed to provide greater choice at the end of life, ensuring that within reason and with safeguards, the wishes of terminally ill, mentally competent adults are respected. Assisted death should be available to complement other end-of-life care, as it does in other countries that have legalised and regulated assisted dying. Those wanting an assisted death should be allowed to be supported by willing healthcare professionals to die at a place and time of their choosing.

Peter Lapsley is patient editor of the BMJ.

  • Alison Payne3

    As a family Doctor who has my own advance directive (I am 51 and healthy – I don't plan to wait till I am old to write it, you never know what is coming your way) and I have also quietly helped patients to die at their request, Peter Lapsley has put it far more eloquently than I.  I totally agree, none of us are trying to force it on anyone –  it is a matter of personal choice.  Some of us feel that quality of life is not something for anyone else to decide for us.  I also have no 'official' religion but my elderly Mum is a committed Christian and feels the same – and has her own advance directive.  So not all Godly people disagree with assisted dying, and I'd like to hope not all Christian doctors want to foist their 'playing god' on to the rest of us!

  • The BMA should discuss Assisted Dying at the AGM.  We should prioritise patient autonomy before religious dogma. The current situation is not acceptable.

  • At the heart of the great plays of Molière is the folly of humans trying to artificially maintain an ideal state that does not take account of future reality, whether through storing up spiritual credits (Tartuffe), money (The Miser) or medical advice (Le Malade Imaginaire). This debate, about idealizing a present conception of how a future death should be, could do with an infusion of Molière's joyous sense of human finitude, as well as some scrutiny of both the evidence base and extensive ethical literature on later life.

    Without sentimentalising or romanticizing illness, the reality of the onset of severe disability is not only of loss but also of personal growth, as evidenced by studies of personal growth in spinal cord injury (1), or narratives of severe stroke such as Kirk Douglas' My Stroke of Luck or Jean-Dominique Bauby's The Diving-Bell and the Butterfly. In addition, our efforts to use this growth are enormously influenced by a negativity about both advanced age and disability that position of 'better dead than that form of disability' will do little to advance.  This was particularly marked in Clint Eastwood's film Million Dollar Baby whereby euthanasia took place in the face of palpable depression, inadequate facilities and support and a dismally untherapeutic environment. This mindset is strikingly mirrored by how much advance directives are phrased almost exclusively in terms of that which I should not have, rather than in terms of what I should have that my might enhance the quality of my life and my care (2).

    A further troubling aspect of the debate is the tendency to disconnect the debate from the pain caused by suicide in other settings, and a failure to ask why suicide might now become right in the context of some diseases and ages but not others: is it a deep manifestation of prejudice against significant disability and age-related disease that suicide should be somehow acceptable in these settings but not at younger ages?

    It is also unhelpful to portray professional resistance to assisted suicide as either paternalistic – clergymen and doctors telling us how to die – or as another correspondent writes 'doctors playing god'. An understanding of human vulnerability, a historical sense that doctors have been here before (widespread support for eugenics in the 1930s), an awareness that we change our priorities and insights with the dying process (3), insights into prejudice against disability and the professional imperatives of assisting the troubled and vulnerable are more prominent themes in the literature.

    Finally, unlike Mr Lansley, while it would be nice to think that I have been responsible for all aspects of my life, the reality of my autonomy is that it has always been exercised in the embrace of others. It is exceptionally rare, if not impossible, for most of us to state that we have been 100% autonomous and had 0% co-dependency of some form or another during the course of our lives.  We diminish the reality of our human existence if we allow the hugely important principle of autonomy to have a vice-like and inflexible hegemony over the wide range of other important aspects of our individual and shared lives.

    Desmond O'Neill MD FRCPI
    Centre for Ageing, Neuroscience and the Humanities,
    Trinity College Dublin

    1. Pollard C, Kennedy P. A longitudinal analysis of emotional impact, coping
    strategies and post-traumatic psychological growth following spinal cord injury:
    a 10-year review. Br J Health Psychol. 2007;12:347-62.
    2. O'Neill D. Present, rather than, advance directives. Lancet. 2001;358:1921-2..3. Micco G, Villars P, Smith AK. The death of Ivan Ilyich and pain relief at the
    end of life. Lancet. 2009;374:872-3.