Joint Committee on the Draft Mental Incapacity Bill Written Evidence

74.Memorandum from Rev Dr Francis Marsden (MIB 713)

  May I establish my own interest in the draft Bill in question? For 19 years, I have been a priest of the Catholic Church. For seven of those years I was chaplain to either a large general hospital (Walton Liverpool) with busy AED and neurological departments, or to geriatric hospitals in Chorley, Lancashire. In my current parish, we have two nursing/residential homes for the elderly and I occasionally take the hospital bleep to substitute for the duty chaplain. All my priestly life I have regularly visited the sick and the elderly parishioners in their homes with Holy Communion.

  On a personal level, moreover, my mother is now 85 and has problems with arthritis, a faulty heart valve, blood clotting and glaucoma. I have delegated Power of Attorney for her, should she ever become incapable I also exercised Power of Attorney for my mother's cousin, my godmother. For several years until her death in 1996, I administered her affairs when she was incapable with Parkinson's Disease and in a residential home.

  I also lecture at Maryvale Institute Birmingham (distance learning) on a Medical Ethics Module for their MA in Personal, Spiritual and Moral Development.

  The aspect of the Mental Incapacity Bill which concerns me is in particular the section on Advance Directives. Previously the Government had said that it did not intend to legislate on "living wills." I wish therefore to comment upon Paras 23-25 of the draft Bill.

  There are several problems with such advance directives.

  The state of mind of a person in good health is not necessarily that of a person when they are ill several years later. A person's decisions and thoughts may change radically when they are seriously ill. The patient may then find himself at the mercy of a written document made a long time ago, which no longer expresses his/her intentions, and yet be incapable of signifying his/her altered wishes. Even if he or she does make some indication that he wants a particular treatment, if he/she is deemed not to have the mental capacity to express his or her wishes, then that indication is likely to be ignored. Such a document may then come to express the dictatorship of the past over the present.

  The draft Bill does not appear to stipulate that an Advance Decision to refuse treatment must have been properly drafted, written down and witnessed. "Word of mouth" reports, where someone with Lasting Power of Attorney merely says that "P said to me she didn't want to be resuscitated in the event of X" or "P didn't want to be treated in the event of Y" are surely inadequate and open to gross abuses. Large sums of money and property are sometimes in the balance when a person nears death, and sad to say, it is hardly unknown for certain relatives to have a vested interest in death occurring sooner rather than later. The very sick and the dying need much better protection than this Bill affords.

  The House of Lords Select Committee, which reported in 1994, opposed giving advance decisions greater legal force, saying this would risk "depriving patients of the benefit of the doctor's professional expertise and of new treatment and procedures which may have become available since the Advance Directive was signed."

  Secondly, I note that the sections 23-25 cover only "Advance decisions to refuse treatment." Surely, this should be widened to include Advance decisions to stipulate certain sorts of treatment, when these are medically feasible.

  There has been considerable concern ever since the Bland judgement, which in my opinion mistakenly re-classified artificial nutrition and hydration (food and water delivered by nasogastric or intravenous tubes) as medical treatment rather than a basic human right. This opened the way for artificial feeding to be withdrawn if it was deemed "inappropriate." However, food and water is a basic human right which I would maintain can never morally be "withdrawn." We must do all we can to make sure a patient receives nutrition until it becomes practically impossible, and the person is dying anyway from other causes. Certainly, the starving to death of patients eg stroke victims, who are not terminally ill, but seriously incapacitated, is a form of passive euthanasia morally equivalent to homicide. Such euthanasia by omission is contrary to the fundamental principle of medical ethics: primum non nocere—first, do no harm.

  The possibility, even the remote possibility, that a relative with Power of Attorney might be able to give legally binding instructions to medical staff (who could be prosecuted for disobeying) that a sick relative is to be deprived of hydration and nutrition, and condemned to a slow and painful death by starvation and thirst, is abhorrent.

  Euthanasia includes not merely active lethal measures to procure the speedy death of a patient, but also the deliberate omission of available medical care, in order to hasten their demise. Disthanasia, the undue and burdensome prolongation of life to no purpose, is also wrong. There does come a time to let nature take its course: I have on several occasions been with families in the intensive care ward when the time came for a respirator to be turned off, because a severely brain damaged patient had no chance of recovery whatsoever and was by all accounts already brain dead. It was my role to commend the dying person's soul to Almighty God. However, it is not the role of the doctor or medical staff to hasten a seriously ill or dying person on their way.

  As a priest, I consider that the last days of a person's life on this earth are of immense spiritual importance. It is a time for the dying individual to make their peace with God, and with their family and relatives, if they need to. As a person approaches death, and I have seen this many times, it is as if the veil of transcendence grows very thin, and for all concerned it can be a most moving and valuable experience of spiritual reality. It may also be an area of experience in which decisions about advance directives made long ago in robust health, now have little value given the new realities of the situation.

  If the Government is sincere in its stated opposition to euthanasia, and wishes to advance the true best interests of people who are mentally incapacitated, it should make it clear that whatever a person may have (allegedly?) stated in an advance decision, there can be no obligation on doctors to carry out unethical acts such as depriving a person of food or fluids or appropriate treatment. Incapacitated people, like all human beings, are entitled to the best available treatment, given in their clinical best interests.

  It is a valuable safeguard that the Mental Incapacity Bill provides for punishment if a person "ill treats or wilfully neglects" a mentally incapacitated person in his or her care. However, in permitting the withholding or withdrawal of food and fluids, with the purpose of ending life, the Bill itself sanctions such "wilful neglect" by starving and dehydrating a vulnerable person to death.

  Section 4 of the draft MIB also lacks clarity, insofar as it attempts to define a patient's "best interests" without clear reference to their health and best clinical interests. Are not "Past and present wishes and feetings" rather too nebulous without some clearer legal mechanism for ascertaining precisely how those wishes are to be expressed and evaluated? What about people who are severely depressed or suicidal? Would medical staff have to go along with their wishes and make no attempt to bring them out of a clinical depression? Are there times when the impartial but concerned and experienced observer does know better than the individual himself or herself what is good for them? The policeman who goes up onto the roof of a block of flats to talk a suicidal man into coming down is, in a way, being paternalistic.

  Unlimited autonomy would suggest that we just leave the man to kill himself if he so wishes, and make no attempt to dissuade him for fear of infringing his "autonomy." Unlimited autonomy can be hard to live with. There are times when we are victims of our own mood swings and emotional state, and need the reassurance and guidance of others.

  Moreover, there needs to be some over-riding statement about the preservation of life, health and consciousness wherever possible, along with adequate pain control treatment. This encompasses the basic role of the medical profession, but it appears to be lacking in the draft.

  I hope that necessary amendments can be made which will cover these points, which I am sure many other people have also made.

August 2003

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