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Briefing papers Does Patient Autonomy Only Apply If You Want To Die?
Thousands of column inches have been written lately in praise of people with severe disability who are asking others to hasten their death. Where does that leave the vast majority of people with impairment who want to live, and make their contribution to the world? Dr Vivienne Nathanson, commenting on the case of "Miss B" on BBC Breakfast News, 22 March 2002, said: "Patients must have the right to say whether or not they want treatment." That is quite true, but they have no right to receive it. In "Who Decides?", the Consultation Paper issued by the Lord Chancellor's Dept. in December 1997, it is admitted (para 2.5) that: "A patient cannot demand a particular form of treatment - that is a matter for the judgment of the doctor. He or she can, however, refuse." (para 2.5) Dr Colleen Clements, a Canadian professor of psychiatry, noted in 1996: "Patient wishes/choices are given supreme value when they are choices not to receive medical care, but are overridden when they are choices to receive medical care. Official opinion cries 'Medical futility' in going against patient wishes for medical care, thus saving money. It cries 'Patient Autonomy' in supporting patient wishes to terminate care, which also saves money." The same ratchet system now operates in Britain. In 2002 Dr. Brian Iddon M.P. said to the Leader of the House of Commons On 14 February, Channel 4 transmitted a programme that showed the application within the national health service of futile care theories. That is when medical staff make subjective judgments about their patients that can lead to death by dehydration and starvation—procedures legitimised in 1993 by the Bland judgment. Rather than the courts and the medical profession leading the debate, is it not high time Parliament began to debate that difficult area of policy? Mr Cook replied, "That sensitive and delicate issue has been raised on a number of occasions. I fully understand the sincerity with which my hon. Friend raises the question, but I have always taken the view—it must be a personal judgment—that such decisions are best left to the discretion of the medical doctors involved, who in hospitals throughout the country are daily faced with difficult judgments. I am not sure that high-profile political debate would assist them to make those difficult judgments." (Hansard, 28 February cols. 850 and 851). In the same vein, a 15th century Minister might have said that the deaths of young princes in the Tower was a delicate matter best left to the discretion of the jailers. In a Channel 4 TV programme filmed at a teaching hospital, shown on 14th February 2002, an elderly man showing signs of recovery from a stroke was selected for death, and his hydration stopped. He clung to life for ten days without fluid. Another patient was allowed to live and went home after a consultant said he felt too tired to argue with the daughter, who insisted that her father should be given food and fluid. The Bland judgment of 1993, legalising removal of the means of life from a patient declared to be in a persistent vegetative state, encouraged the British Medical Association's Ethics Committee to rule in 1999 that doctors could withdraw food and fluids in the "best interests" of patients who could not speak for themselves, such as disabled newborns, people with Alzheimer's disease and people seriously disabled by a stroke. The Times (24 June 1999) reported after the BMA's press conference that: "The doctor must first judge against a set of criteria whether the patient is benefiting from being kept alive… If the family cannot be persuaded that it is time to withdraw treatment" (to starve and dehydrate the patient) "then it has the option to go to the courts for a ruling. Doctors, however, should not go to the courts to seek backing for a decision to withdraw treatment." Families are commonly told that the patient is already dying, to forestall objections. In an opinion poll in 1999 which asked "Do you think doctors should have a legal right to withdraw food and fluids?" only 30% thought they should have this right, while 56% thought not. In a letter to The Times on 28 June 1999, a daughter described what happened to her elderly mother who was taken to hospital with a fractured skull and severe brain damage. At first she was put on an intravenous drip. "Two and a half weeks later the drip came out of its own accord and was not re-inserted. We were not consulted but did not object because we thought she would die more quickly. We then watched her for the seven agonising days it took her to die of dehydration…" Note: the most common type of "Living Will" authorises planned death from lack of fluid. Not all signatories may realise what might happen to them. Even before the BMA issued its guidelines for premature death, dehydration was being practised. Dr Keith Andrews, Director of medical services Royal Hospital for Neurodisability, wrote in a letter to the BMJ: "It is ironic that the only reason that tube feeding has been identified as 'treatment' is so that it can be withdrawn…" ("Tortuous arguments evade the issue". BMJ 25 November 1995.) An elderly woman had a second stroke on 31 May 1998 while in a nursing home. Her daughter tried and failed to get her mother admitted to hospital. She was given liquid through a sponge on a lolly stick. "She was so desperate for moisture that at one point she snatched the sponge from me and rammed it into her mouth," the daughter said. Subsequently "her total intake of liquid could not have been much more than half a pint from the time of the second stroke until she died some seven and a half days later," though she told the doctor "My mother still had most of her own teeth and not getting any liquids was making her teeth stick to the insides of her lips. "My mother was complaining of a bad backache. Someone said that was her kidneys packing up. By the Friday she was no longer passing water and the room stank of death. She finally died at around 9pm on Sunday 7th June 1998." The European Court and the Mental Capacity Act Dr. Peter McCullagh, of the John Curtis School of Medical Research in Canberra, Australia, wrote in a letter to The Times on 16 May 1996: "Animal research has ... shown that keeping the mouth moist has no more influence on thirst sensation than an oasis mirage has for a traveller lost in the desert." Dr. Helga Kuhse, speaking at the Fifth Biennial Congress of Societies for the Right to Die, held in Nice in September 1984, said: "If we can get people to accept the removal of all treatment and care - especially the removal of food and fluids - they will see what a painful way this is to die and then, in the patient's best interest, they will accept the lethal injection." Article 2 of the European Convention on Human Rights, now part of our law, lays down that everyone shall have the right to life. Has the European Court of Human Rights, in refusing Leslie Burke's application, now endorsed the dehydration method of killing patients who can't communicate? Not quite. While supporting the General Medical Council's guidelines, challenged by Leslie Burke, the judges on 11th July 2006 interpreted them and the earlier Appeal Court judgment as protecting his life, and said 'As a general rule ANH (Artificial Nutrition and Hydration) should continue as long as it prolonged life. There were nevertheless circumstances, for example, where a doctor might find that ANH in fact hastened death and it was thus impossible to lay down any absolute rule as to what the best interests of a patient would require.' Under the Mental Capacity Act 2005, a doctor is legally obliged to comply with an Advance Directive refusing food and fluid, but is not bound by one requesting it. The new Court of Protection, to be set up under the Act , will have the power to sentence a patient to death by dehydration, like Terri Schiavo in the USA, and its deliberations can be held in secret, at a judge's order. Euthanasia has been practised by doctors in the Netherlands without fear of prosecution for a number of years. Legalisation is alleged to bring the whole practice of killing patients into the open, where it can be "regulated". It is not often realised that less than half the Dutch euthanasia deaths, regardless of "strict guidelines," were reported as such to the authorities. This was revealed in two official enquiries. The form of report which was supposed to be made by the euthanasing doctor, listed wonderfully strict requirements before "voluntary" euthanasia could be applied - and then allowed for euthanasia "without specific request." In fact doctors could kill patients when they liked. The Dutch "Lifewish Declaration Foundation" tried to give patients a chance to protect themselves. "More than 10,000 people in Holland are carrying anti-euthanasia 'passports' because they are frightened of being killed prematurely by over-enthusiastic doctors if they fall ill," the Sunday Telegraph reported on October 18 1998.
The new law gives even less protection to patients. Dutch paediatricians are now asking for the right to kill disabled newborn babies more openly than before. A report in the New England Journal of Medicine, February 22 2001, on Physician-Assisted Suicide in Oregon showed that from 1998 to 2000, the proportion of those who died after receiving prescriptions or lethal medications and who felt that they were a burden to family, friends or other care givers rose from 12% to 26% to 63% in each successive year. Mrs. Rita Marker, head of the International Task Force on Euthanasia and Assisted Suicide (ITF), commented that while proponents of assisted-suicide claim to be offering a "choice", they're really leaving the elderly and infirm with an obligation. "You have someone who merely offers the option, saying 'Well, you know you could get this prescription. You could get help,' and that 'help' is in the form of a deadly overdose of drugs. Well then there's the question of 'Would that be better for everybody else?' "And that's not a choice anyone should have to make." In Britain "Money now follows the individual to the point of service," Professor Allyson Pollock noted in The Lancet 1999:354:1889-982 ("How the World Trade Organisation is shaping domestic policies in health care"). "In 1991, the National Health Service internal market replaced resource allocation based on area needs with capitation funding. Payments per person are generally seen as a cost-containment strategy because they provide organisations with an incentive to withhold care (necessary and unnecessary) … Capitation models are promoted by the World Bank." In a book called "Freedom to Die, published in 2001, Derek Humphry, the British-born founder of "Hemlock" in the U.S.A., and Mary Clement, wrote approvingly (p.361): "The rising cost of health care is a social reality that has promoted a rush of populist interest in constructing a new culture of dying in the United States, focussing on shortening the dying process for those that want it. It is the unspoken connection of value to cost - for the nation, business and the family unit." Writing in the British Medical Journal of 7 December 1996, fifty years after the Nuremberg trial of the Nazi doctors, Dr. Hanauske Abel reported an estimate made in 1941: "The 70,273 futile or terminal patients 'disinfected' (murdered) in German killing hospitals up to 1 September 1941 are calculated to free up '4,781,339.72 kg of bread, 19,754,325.27 kg of potatoes…' a total of '33,733,003.40 kg' of categories of food, plus '2,124,568 eggs' … Removal of these patients from the wards saved estimated hospital expenses of '254,955.50 Reichsmarks per day'". Dr. Hanauske Abel's article concludes: "Developments within medicine and society during the past decade, particularly in North America and Europe, found another convergence of previously separate political, scientific and social forces. Biomedical progress, fiscal constraints, legal decisions, and government regulation are all closing in on the practice of medicine. These forces may not be as demoniacal as those in Germany in the summer of 1933, but only by approaching their next apparent alignment with great caution can we avert a conflagration." A private member's bill - the "Medical Treatment (Prevention of Euthanasia) Bill" - was opposed by the Government and so failed for lack of time. The Government opposed the "Patients' Protection" Bill also. The Mental Capacity Act 2005 put the Bland judgment into statute form. Now the Law Commission recommends that "Mercy" Killing should be scarcely punishable. Private Members should continue to promote Bills to protect their constituents' lives. Published by ALERT 27 Walpole Street, London SW3 4QS. Telephone
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Paralysed woman wins the right to decide when
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