Monday, 21 June 2010

Personal View of the Debate on the End of Life Assistance (Scotland) Bill

We are very fortunate to have the personal input of Rev Dr Donald M MacDonald. He is a medically trained minister of the Free Church of Scotland with twenty one years’ experience as a doctor and surgeon in Scotland and India before becoming the minister of a congregation in Scotland and then lecturing in Practical Theology in the Free Church College, Edinburgh. He retired in June 2009. He has had MS for 27 years and uses a wheelchair. His perspective therefore is of extreme importance for us and we are very grateful for his contribution.

On Saturday 12th June I attended a debate on the End of Life Assistance (Scotland) Bill in Committee Room 1 at the Scottish Parliament. Speaking for the Bill was Margo MacDonald MSP, supported by members of FATE (Friends at the End) and others, and against was Suselle Boffey, supported by members of Inclusion Scotland and others, many of whom have disabilities. The debate was ably chaired by Rev Cllr. Ewan Aitken. No vote was taken.

Margo MacDonald argued for the Bill on the basis of individual human autonomy: each one has the right to decide when one’s life is no longer worth living because of unbearable pain, weakness, or loss of independence and dignity. People should have the legal right to be helped to end their lives when they find life intolerable. She claimed that the majority of people are in favour of such a Bill, that similar legislation in the Netherlands and Oregon is working well and that her Bill has strong safeguards against abuse.

Suselle Boffey argued for the right of people with disabilities to have all necessary support to live independently to the very end of natural life. The Bill is harmful to the interests of disabled people because it includes as eligible for “end of life assistance” those who are “permanently physically incapacitated to such an extent as not to be able to live independently and who find life intolerable.” This potentially includes many thousands of people, especially those who do not have access to the support they need for independent living. The important thing is to ensure that disabled people are treated equally under the law and that this support is available. The Bill would encourage stereotypical views of disabled people as not having a good quality of life and would put pressure on them to think of themselves as burdens on society.

People were then invited to speak briefly from the floor. The views polarised between supporters of the Bill, who appeared to think it was self-evident to any rational person that it was humane to help someone to end their life when they found it intolerable because of pain, loss of independence and loss of dignity, and its opponents, who argued passionately that people with disabilities do have a good quality of life provided they have the necessary support and equipment to live with freedom, choice, comfort and dignity.

My own view
I oppose the Bill on the following grounds:
1. The Bill attacks the sanctity of human life.
From the Christian perspective human beings are made in God’s image and likeness, and this likeness and consequent dignity is not diminished by injury, illness, physical or mental impairment or loss of function. Defence of and care for the weak and vulnerable has always been a cornerstone of the Christian social conscience. We have a duty to care for one another to the very end of life and it is wrong to deliberately end someone’s life.

2. The Bill is based on the myth of absolute individual autonomy.
The foundation of the Bill is clearly stated on page 2 of the original Consultation Document to be “the principle of autonomy, that the person has the right to determine the quality of his or her own life and its value, unrestricted by the moral, cultural, religious, or personal beliefs of others”. This would appear to give the individual an absolute right to decide when his/her life has such a quality and value that it should be ended. This extreme individualism ignores the importance of the fact that we humans exist in relationships and in community. We come into the world as completely dependent creatures and we remain dependent on one another to a greater or lesser extent throughout our lives. As well as rights we have responsibilities and duties towards others. The care we exercise towards one another is part of what makes us fully human. We should also learn to receive care as well as give it. It should not be regarded as loss of dignity to be dependent on others. I have found that becoming more dependent on others makes me more appreciative of the loving care and the sheer humanity of those who care for the weak, the vulnerable and the defenceless. We have no right to demand that someone help to end our life. Ending an innocent person’s life, even with the purpose of reducing the amount and length of suffering is not justified, especially when good long term support and palliative care are possible. Our common humanity is best represented and supported by ensuring that this kind of care is available to all and not by deliberately ending a life. I fear that this Bill, if it comes into force, would lessen people’s willingness to care sacrificially for those who have long term disabilities and those suffering from chronic, debilitating and terminal illnesses.

3. The Bill proposes an unacceptable change in the role of medical practitioners.
From the time of Hippocrates, 2,400 years ago, it has been the accepted ethical standard of the medical profession not to administer a fatal dose to a patient. This radical new proposal would have serious effects on the profession and the doctor/patient relationship. It would require doctors to be trained in “end of life assistance” – in other words how to kill people. It would cause a division in the medical profession between those who see deliberately ending a patient’s life as acceptable and the vast majority who want to maintain life with all the support necessary to reduce the suffering of those who are dying. It would undermine confidence in the medical profession as supporters of life. Of course the time does come in the course of an illness when death has to be allowed to supervene, but supportive and palliative care should continue to the end and the doctor should never intentionally bring about the death of a patient. Patient autonomy is not absolute. The patient has the right to refuse treatment that he/she considers to be intrusive and distressing and may prolong life only at the cost of increased suffering, but this does not confer the right to demand that the doctor end their life deliberately. The two situations are different.

4. The Bill is poorly drafted and, despite so-called safeguards, wide open to abuse.
I have highlighted many defects in my submission to the Parliamentary Committee, but here are a few of the most glaring:

4.1 End of Life Assistance is defined as “assistance, including the provision or administration of appropriate means, to enable a person to die with dignity and a minimum of distress”. The title of the Bill says that it is for “persons who wish their lives to be ended”, obviously by someone else (euthanasia) and not necessarily by themselves (assisted suicide). “Appropriate means” are never defined, another serious omission. The inference of the title and the definition taken together is that only by deliberately ending one’s life can one die with dignity – an insult to those practising and those benefitting from palliative care. At a time when we are trying to stem the tide of suicides among young people who see no point in going on living, this seems a strange note to be sounded in proposed legislation!

4.2 The Bill defines too loosely the categories of people eligible for “end of life assistance”. “Terminally ill” is defined as having less than six months’ life expectancy. This is extremely difficult to predict. As noted above, the inclusion of a large number of people who are “permanently physically incapacitated” is unacceptable. The main criterion of eligibility seems to be finding life “intolerable”. This is a subjective judgement and may well vary over time depending on a wide range of factors – physical, psychological, emotional and social.

4.3 There are many flaws in the procedure of application for “end of life assistance”. It lays a huge burden of responsibility on the “designated practitioner”. The role of the psychiatrist is fairly peripheral, being limited to judging capacity and freedom from undue influence. The possibility of palliative care has only to be “discussed”; the minimum age is only sixteen; the residency requirements could easily be evaded; the various time limits are too short; the requirements for witnesses are poorly defined and the impression is given of these being merely token safeguards.

4.4 The procedure at the end of life, including the means of ending life and who actually administers them, is not clearly defined. There seems to be a deliberate vagueness about the matter, with the liberal use of euphemisms.

4.5 Although the motive of the framers of the Bill is not to save money, the accompanying Memorandum notes that this Bill could actually result in savings for Health Boards, because ending a person’s life is cheaper than continuing to treat and care for the person (paragraph 97). This potential financial saving could very quickly become a determining factor in decision making in treating people with disabilities or chronic illnesses and in end of life situations and this would put extra pressure on patients and carers.

I believe that if this Bill were to become law, it would have a detrimental effect on society’s respect for human life, would damage the doctor-patient relationship, would be difficult to enforce without widespread abuse and would lead to a devaluing of the lives of people who are dependent on others because of disability or chronic illness or are nearing the end of life. Evidence from the Netherlands and the State of Oregon shows the potential for abuse of such legislation. Instead of such a law what we need is to ensure the widest
possible availability of support for independent living and good long term and palliative care for all who need them.


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