01 December 2016
A 21st Century Death
Is it modern technology, lack of religious beliefs or simply lack of familiarity with death which makes us so bad at managing dying?
by Lynda Goetz
A few weeks ago, the case was reported of a 14 year-old girl who was dying of cancer and was, at her own request and the consent of a judge (and at not inconsiderable expense to her grandparents), cryogenically frozen in the hope and belief that she might be able to be ‘woken up’ in hundreds of years when a cure to her illness had been found by medical science.
The case of former police officer and Gulf War veteran Paul Briggs, who is severely brain-damaged and ‘in a minimally-conscious state’ following a road accident over a year ago, has also, once again, brought to public attention the very conflicted modern attitude to death and dying. Paul Briggs is only 43 but his wife Lindsey is arguing for his life-support to be withdrawn as she feels that he would be “horrified” at being kept alive in his current state. He does not recognise or respond to her when she visits and when she looks into his eyes she sees “at best, nothing there, or at worst, distress or suffering”. Their daughter of five is apparently “scared of him”. Lindsey Briggs feels convinced that her husband would not want to continue “living for no reason”. Doctors, however, have apparently noticed signs of improvement, even though they admit that were he to survive for the nine or ten years expected for people in his condition, PC Briggs would at best remain severely physically disabled. His family “don’t want him to suffer any more”.
The Court of Protection hearing is expected to last four days and like all such cases is complex. In 2012 Tony Nicklinson, a 58-year-old with so-called ‘locked-in syndrome’, lost his High Court case to allow doctors to end his life, which he described as a “living nightmare”. He refused food from the date of the court decision and died of pneumonia a week later. Mr Nicklinson’s widow, Jane, and Paul Lamb, a former builder paralysed from the neck downwards, carried on Mr Nicklinson’s campaign and took their appeal to the Supreme Court, where it was turned down, and thence to the European Court of Human Rights, which unanimously declared the applications inadmissible. Last year a 50-year-old man, known only as Martin, lost his High Court battle against General Medical Council (GMC) guidelines which prevent doctors from assisting patients to end their own lives.
For those who are not so disabled, whose family are prepared to assist and who can face the idea of death far from home, there exists the option of assisted dying/assisted suicide in a country like Switzerland, through an organisation such as Dignitas. For those who are severely disabled, however, that route is not available if family members feel unable to be involved. All the rulings to date put healthcare professionals at risk of prosecution should they get involved. As there is a lack of clarity as to what constitutes involvement, there is concern that even discussing the options or preparing background information on a patient’s condition might be considered involvement, so healthcare professionals are understandably wary. A very clear case note of the landmark case in the Supreme Court on 25th June 2014 is provided by Adam Sandell, junior counsel to Martin in which he quotes, inter alia, Lord Sumption’s statement that ‘many medical professionals are frightened by the law and take an unduly narrow view of what can be done to relieve the suffering of the terminally ill under the law as it presently stands. Much needless suffering may be occurring as a result’.
Anyone who has read The Diving Bell and the Butterfly (1997) or seen the film which was made ten years later, describing effectively the ‘view from the inside’, will know that it is impossible not to be moved by such tragic cases. That autobiographical story was ‘written’ by Jean-Domenique Bauby, the glamorous former editor-in-chief of Elle magazine, who, having suffered a massive cerebrovascular incident (a type of stroke) at the age of 43, awoke from a coma three weeks later suffering from locked-in syndrome and able to move only his head and one eye, but with his mental faculties intact. The story was ‘dictated’ to assistants using a method called ‘The Silent Alphabet’ and involved Bauby blinking his left eyelid to indicate letters, each word taking up to two minutes to get onto paper. Bauby’s daughter, who was only seven at the time, recalls looking deep into her father’s opened eye and not recognising him. She apparently cried out, “This is not my father, you are lying!” before running out of the room.
Bauby did not express a wish to die, although that wish is attributed to him in the film. He died, like Tony Nicklinson, of pneumonia. Paul Briggs is unable to communicate any wishes, but his family feel certain that as “the kind of person who lives for the moment” and to whom the “most important thing is independence” he would not wish to continue life ‘as a vegetable’. (Bauby apparently joked that when people heard he was a vegetable, he asked “What sort of vegetable? A carrot? A leek?”)
After Labour peer Lord Falconer’s Assisted Dying Bill ran out of time before the general election in May 2015, Labour MP Rob Marris won a ballot in June of that year to put forward a similar bill in the Commons. The bill proposed that patients with no more than six months to live and who had ‘demonstrated a clear and settled intention’ to end their lives would be prescribed a lethal dose of drugs on the authority of two doctors. This issue is one which divides both the public and parliamentarians and not down any party lines. The subject had not been debated in the House of Commons for 20 years. However, in spite of indications that members of the public were more inclined to support such an idea, the parliamentarians were not and the bill was defeated by 330 votes to 118 in a free vote in the Commons. Less than a year later, another private member’s bill has been introduced, this time once more in the House of Lords with Lord Hayward as its sponsor. The first reading (which is a formality and merely signals the start of the Bill’s journey through the Lords) took place on 9th June, but as yet no date has been set for a debate. As few private members’ bills become law due to lack of time, and this government looks set to have enough legislation of its own to keep the Houses occupied, it is probably not worth holding out much hope or worrying (depending on your point of view) that this one will make its way through to Royal Assent.
The question of how we deal with human death is complicated by issues that do not affect our attitude to the death of other living creatures. Were we to suggest that a beloved pet should be allowed to die of starvation and dehydration, which is effectively what withdrawing life support means, there would be outrage and cries of ’cruelty’. It is of course, much kinder, as most acknowledge, to ‘put an animal out of its misery’ (which is done with a lethal dose of drugs) and yet we are not prepared to offer this ‘kindness’ to our fellow humans – even where they have expressly requested it. The reasons for this are numerous and both sides of the argument have vocal supporters. The campaign group Dignity in Dying argues that around 80% of adults support their campaign to legalise assisted dying with safeguards, whilst Care not Killing supports palliative care and opposes euthanasia. Another organisation, ‘Living and Dying Well’ (ldw), seeks rather to ‘explore the complexities surrounding the debate on assisted dying and other end-of-life issues’ and feels that it is not simply the question of assisted dying which needs re-examining, but the basic questions of how we deal with death and dying – our own and those closest to us.
Vets do not always want to administer that fatal dose, particularly where they feel that the welfare of an animal is not best served by doing so. Doctors have never been expected to be involved in actively promoting the death of their human patients, so their total reluctance even to express ‘neutrality’ on the subject is surely entirely understandable? Physician-assisted suicide (PAS) is available to the terminally-ill in five US States, but in this country the British Medical Council (BMA) have, thus far, resisted all attempts to involve doctors in any form of assisted dying, which is felt to undermine the integrity of the profession and to subvert the role of the physician as healer. Atul Gawande, the physician who wrote Being Mortal: Medicine and What Matters in the End, (a book I would thoroughly recommend) makes the point that; “Our ultimate goal is not a good death, but a good life to the very end”. Can we – the public, the legislators and the medical profession – somehow ensure this is what we achieve?
Joan Bakewell’s series on BBC Radio 4 on Wednesday evenings ‘We Need to Talk about Death’ started on 30/11/16, available on iPlayer.
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