Wednesday, 5 May 2010

The End of Life Assistance (Scotland) Bill: Views from the trenches. Part 2

This posting is the second part of the article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill. The article will be posted in 4 parts to facilitate reading.


Dignity in health care has come to be synonymous with assisted dying. The Voluntary Euthanasia Society is now called Dignity in Dying, and if you go to Zurich to end your life, it is to the Dignitas organisation. All political attempts to legalise assisted dying base their case on dignity. The MacDonald Bill, as you can see, does the same, but doesn’t define dignity, or explain why it should be enhanced by the Bill.

Dignity is a complex social construct, involving honour and esteem, merit, grace, relationship and dependence, who we are and how we behave. There are ways of identifying factors which compromise dignity in health care and good evidence on how to enhance it. Dignity is cheapened by simply equating it to assisted dying. Arguably the MacDonald Bill diminishes dignity in dying because of the requirement to submit to a formal protocol, with numerous consultations, scrutiny of one’s mental health, within a short time frame and without the opportunity to discuss hesitation or distress lest that should be interpreted as a wish to stop the process, all at a time when life is already deemed to be intolerable!
So what about choice and autonomy? Isn’t autonomy a basic human attribute? Dictionary definitions of autonomy include; ‘Freedom to determine one’s own actions; to govern our will by our own principles and laws; to make choices regardless of the influence of, or effect upon others’. Proponents of assisted dying say that we should be free to make our own choices about these deeply personal issues, without having to defer to anybody else. But if we think about it a bit, is there anything we can do or decide, trivial or important, which does not have a potential or actual effect on others? In reality, is autonomy not a limited concept? Maybe it is actually a myth! We are in fact created and designed to be relational and interdependent and our very dignity is intrinsic to that. Choice is something we do have, but we must choose responsibly.

Margo MacDonald’s Bill recognises that people can come under inappropriate influence, and it describes safeguards to prevent this. Scrutiny of the safeguards reveals inadequacies, but that is not the point I want to make here. What I want to say is that when people are seriously ill or incapacitated, they are particularly vulnerable to internal and external influences. The availability of the choice for some to have their lives ended would create a powerful societal influence which would place others – a greater number of people - at risk. Exposure in the course of debilitating and terminal illness to the very influences created by this Bill would increase the risk to a vulnerable majority. One individual insisting on the right to die will affect others. When people say that life and death are individual matters, they are wrong.

What does the Bill propose? To summarise, if it should become law in its present form, it would be legal, under certain circumstances, to assist a requesting person to die, or to help someone else to assist the person to die. It is usually assumed that such a procedure would be carried out by a doctor, but this Bill makes allowance for this to be done by lay people who meet certain eligibility criteria, and provided a doctor is present. The requesting person must be at least 16 years old, with either a terminal illness with a life expectancy of six months or less, or a physical debility which renders them unable to live independently, plus they must find life to be intolerable. The formal procedure includes two independently witnessed written requests by the person, assessments by the doctor to whom the request is made, assessments by psychiatrists, discussion with the doctors about the illness or disability from which the person suffers, feasible alternatives to assisted dying, the means of causing the person’s death, who should do it, where it should be done, and the option to stop the process at any time.

Given that the doctor is the only professional mentioned in the Bill and related documentation, it is reasonable to assume that the doctor will be responsible, not only for clinical assessment and drug administration (assuming that to be the chosen means of ending life), adjudication of the degree of dependence caused by a disability and the level of intolerability of life arising from this or from a terminal illness but also for scrutinising the credentials of the witnesses, and determining that the eligibility criteria of witnesses are met. The Bill is completely silent on the means by which death is to be brought about, as this is left to the supposed expertise of doctors. There is no opt out for doctors who conscientiously object to assisted dying, and referral to a willing colleague is obligatory. It is therefore possible that the requesting person could end up being assessed by a doctor who does not know them, and who would certainly have some difficulty assessing the degree of intolerability, and the level of influence under which the person is acting, let alone the legal ins and outs. And as far as the legal side of things is concerned, it is interesting to reflect on the comments of Julia Cumberlege, former health minister, House of Lords, who said; “The medical profession is there to treat, cure, and care for sick and disabled people. Once lawyers get involved the whole premise changes: bitterness, strife, and serious money take over, families are divided, and suspicion reigns. Doctors should steer clear of assisted suicide—or more accurately of putting people to death—if they want to retain the trust of their patients.” This Bill depends largely on the cooperation of doctors to make it work, but there has been no prior focussed consultation with the medical profession. Moreover there doesn’t seem to have been any thought about the level of competence a doctor would need before providing this service, how doctors will be trained for that, or about personal and professional support for those who are willing to be involved. Nor have similar needs for lay people been considered.

Continued on next posting...

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