Dying by the law
Athene H. Aberdeen 08/04/2021
In his 2019 Reith lecture Jonathan Sumption a retired British High Court judge opined that the role of law apart from giving statutes had become more and more one of producing conformity in the society. He described this kind of collective action to provide standards for greater security and reduced risk in our lives in health and to the person. The following is a reflection on this aversion to risk and shows how the roles of law intersect and indicate what the law can do and what it cannot do. These three cases can be the means to deeper study on the subject.
Charlie Gard the dying UK infant had a rare form of mitochondrial DNA depletion- the RRM2B mutation- and was warded at Great Ormond Street Hospital. There is no proven treatment to this disorder. When he began having severe seizures, the doctors suggested he be removed from life support. The parents disagreed saying since Charlie responded to their touch, his brain damage was not as severe as the doctors had concluded. They decided to send the infant to the USA for an experimental nucleoside therapy and raised 1.3 million pounds for that purpose. The hospital then applied to the High Court and the judge ruled that it was in Charlie’s best interest to stop life support. The parents pursued their fight to the Supreme Court, then to the European Court of Human Rights, but in the end, they lost their appeal. Apart from the human rights issues, two issues stand out, a) the value placed on a person’s life, and b) the role of the state, the family division of the High Court in overriding the decision held by parents to seek a cure for their sick infant.
In a Canadian case, Alan Nichols a 61-year-old retired school janitor depressed but otherwise healthy, arranged to receive a lethal injection from his doctor unknown to his family and was euthanized despite their requests to stay the procedure. Lethal injections were previously applied in Canada only to terminally ill patients, under Medical Aid in Dying (MAiD) legislation. But before Alan’s request, a Quebec judge had ruled that denying suffering patients to assisted dying is forcing them to endure harsh, physical, and psychological suffering, and she overturned the previous policy by observing that the patients’ rights, liberty, and security were being violated when the “requirements for that [patient’s] death have to be reasonably foreseeable”. The ethical dilemma here revolves on a) how Alan saw himself as a person, his understanding of his human dignity and, b) whether a patient who suffers from depression can exercise full autonomy under the law.
In an earlier case out of the United Kingdom, ‘The socialite and her dialysis machine’, the woman in question had attempted suicide by swallowing 60 paracetamol tablets with a bottle of Veuve Cliquot. She was rescued in time, but so much damage had been done to her liver and kidneys that she needed to go on dialysis for some months. She refused the treatment saying that was no way to live, and the hospital applied for a court order to restrain her and to allow her to be treated. It seemed that her family had come to terms with the unconventional life she had been living, and they supported her in her decision, knowing as she did that she would die without the dialysis. The question before the court was whether her apparently frivolous reasons for wanting her life to end were rational and “capacitous”. Having heard the evidence, the judge decided in her favour and ordered the hospital to respect her wishes. He concluded that she was entitled to make her own decision based on things that are important to her and in keeping with her own personality and system of values, and without conforming to society’s expectations of what is ‘normal’ in such situations.
In two of these cases, the patients are both rational human beings whose conception of the good was turned in on their own personal good and no other. Both felt no longer secure due to illness and this existential reality has been recognized by the state in both jurisdictions. With Charlie Gard, the state nationalized the parent’s decision to care for their sick child. In so doing, the state’s conception of the good replaced that of Charlie’s parents without any sound reasons for doing so. We therefore need to examine more closely in democratic societies, the ethical consequences when the value of life is increasingly relativized as legislation marries individual wants- the patient’s autonomy to choose- with their rights to choose death. Or, as in Charlie Gard’s case, when the state similarly implies that the quality of life of that child was not worth sustaining.