Were 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.