Sunday, August 5, 2018
Today, I'll take a break from controversy. Let's talk about literature.
In 2003 the President’s Council on Bioethics published an anthology about bioethical dilemmas. It was a surprising contribution by a government committee. Such bodies are better known for generating reports which are dismal, dull, dreary and destined for pulping.
The selections in the anthology ranged from J.M. Barrie’s Peter Pan to Plutarch. Not only were they thought-provoking, but also enjoyable. At the time I thought it was the last word in the literature of bioethics, but since then I have discovered other texts.
One of these, which I highly recommend, is the Japanese novel The Sea and Poison, by Shusaku Endo, who, like Graham Greene, was a perpetual also-ran for the Nobel Prize. Endo is better known in the West as the author of Silence, which Martin Scorsese recently made into a film.
Silence was a 1966 historical novel about the apostasy of a Catholic priest in 17th Century Japan. The Sea and Poison, an earlier work published in 1958, is also about tormented consciences. It is based on an incident which happened shortly before the end of World War II, when Japanese doctors vivisected several American POWs. The focus of the story is not the gory procedure, which is described very briefly at the end of the novel, but the inner lives of the doctors and nurses. How could they have allowed themselves to participate in something which was so clearly evil? It’s extraordinarily insightful – and very relevant at a time when we are debating conscientious objection.
The Sea and Poison is out of print in English, but can easily be obtained second-hand on the internet. It’s well worthwhile for anyone teaching bioethics.
In 2003 the President’s Council on Bioethics published an anthology about bioethical dilemmas. It was a surprising contribution by a government committee. Such bodies are better known for generating reports which are dismal, dull, dreary and destined for pulping.
The selections in the anthology ranged from J.M. Barrie’s Peter Pan to Plutarch. Not only were they thought-provoking, but also enjoyable. At the time I thought it was the last word in the literature of bioethics, but since then I have discovered other texts.
One of these, which I highly recommend, is the Japanese novel The Sea and Poison, by Shusaku Endo, who, like Graham Greene, was a perpetual also-ran for the Nobel Prize. Endo is better known in the West as the author of Silence, which Martin Scorsese recently made into a film.
Silence was a 1966 historical novel about the apostasy of a Catholic priest in 17th Century Japan. The Sea and Poison, an earlier work published in 1958, is also about tormented consciences. It is based on an incident which happened shortly before the end of World War II, when Japanese doctors vivisected several American POWs. The focus of the story is not the gory procedure, which is described very briefly at the end of the novel, but the inner lives of the doctors and nurses. How could they have allowed themselves to participate in something which was so clearly evil? It’s extraordinarily insightful – and very relevant at a time when we are debating conscientious objection.
The Sea and Poison is out of print in English, but can easily be obtained second-hand on the internet. It’s well worthwhile for anyone teaching bioethics.
 Michael Cook Editor BioEdge |  |  |  |
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A difficult and controversial ruling viewed from a lawyer’s perspectiveUK Supreme Court decision changes rules about brain-damaged patients
by Clark Hobson | 4 Aug 2018 |
The Supreme Court is the United Kingdom’s highest appellate court. It has now ruled that it is not necessary to obtain a court order to withdraw life-sustaining clinically assisted nutrition and hydration (CANH) from patients in a vegetative or minimally conscious state. However, there must be agreement on the patient’s best interests between the clinical team and those with an interest in the patient’s welfare, such as family and carers.
Further, appropriate statutory tests must be followed, as well as observing relevant guidance and good medical practice. The Supreme Court also stated a court application can and should be made in certain circumstances. These include if the way forward in treating the patient is finely balanced, or there is a dispute about the patient’s best interests.
The decision comes in a case involving “Mr Y”. Mr Y was an active man in his 50s. He suffered a cardiac arrest which resulted in extensive brain damage. He never regained consciousness following the cardiac arrest. His treating doctor concluded that even if Mr Y were to regain consciousness, he would have severe cognitive and physical disability. He would remain dependent on others to care for him for the rest of his life. His wife and their two children believed he would not wish to be kept alive. Mr Y’s clinical team agreed it would be in his best interests for CANH to be withdrawn.
The case was initially heard by the High Court. There, a declaration was granted that Mr Y’s clinical team was not required to bring before the court the withdrawal of CANH from Mr Y. Permission to appeal directly to the Supreme Court was granted. Before the case was heard, Mr Y passed away. The Supreme Court decided still to hear the appeal, because of the general importance of the issues raised by the case.
The starting point for these issues is the decision involving Tony Bland, the 96th victim of the Hillsborough disaster. He was diagnosed as being in a vegetative state. Bland was decided in 1993. Bland held that if it is in the patient’s best interests, then CANH can be legally removed. Further, it was in Tony Bland’s best interests to remove CANH. But, Bland is a cautious decision, with safeguards put in place to limit its scope. One of those safeguards was the recommendation, as a matter of good practice, for applications to be made to court before CANH can be withdrawn.
The Supreme Court’s 2013 decision in Aintree University Hospitals v James is also important. James stated that the fundamental question facing a doctor or court considering treatment of a patient who is not able to make their own decision, is whether it is lawful to give treatment. If the treatment is not in the patient’s best interests, it would be unlawful to provide it. It would therefore be lawful to withhold or withdraw that treatment. The decision in Y now makes the legal position clear. Decision-making has been handed back to medical professionals, to undertake with families and carers, about patients.
Comment
Y will have several practical implications. Many of these are positive. In those cases where there is no doubt as to patient’s best interests, this decision enables families and patients to spend their last days together without the added expense and distressing burden of court proceedings. The court endorses this.
The decision should also alleviate the risk of inappropriate treatment continuing by default whilst court orders are pending. The decision also recognises that the dilemmas facing the clinical team, families and carers of patients in a vegetative or minimally conscious state are not so radically different from, for example, critically ill patients or patients with degenerative neurological conditions. Therefore, to have judicial involvement in the former, but not the latter, is arbitrary. Removal of this arbitrary distinction is justified practically. Across all these conditions, where a patient lacks capacity, the clinical team making treatment decisions will do so based on the patient’s best interests. This evaluation may not be straightforward, with difficult diagnoses and prognoses to make.
One estimate suggests there are around 24,000 patients in a vegetative or minimally conscious state in the NHS in England. Another estimate, which includes those in nursing homes, places this figure at around 64,000. Not all these cases will be affected. There is no need to go to court where patients have signed an advance decision to refuse treatment.
Where there is disagreement as to the patient’s best interests, the Supreme Court makes it clear that an application to court should be made. Resource allocation questions also arise. It may be extremely hard to detect in practice whether treatment costs may influence best interests deliberations, particularly on the part of families and carers. However, it has also been observed that the delay involved with court cases also places pressure on NHS resources.
Some have also queried whether CANH should be properly classed as medical treatment or is better perceived as basic case. That is, it can be asked what the pouring of food down a gastronomy tube is supposed to be treating. Y does acknowledge that CANH is more readily perceived as basic case. However, it goes on to state that in a critical care setting, CANH is not considered differently from any other form of life-sustaining treatment.
That Y hands decision-making to medical professionals, and these concerns, points to the increased need for clinicians to understand the relevant statutory provisions and supporting practice. The Mental Capacity Act 2005 is most important and relevant in this regard. The Act is the now statutory context within which treatment decisions are taken in relation to those who lack capacity. It places the best interests of the person who lacks capacity at the centre of the process. The Act also sets out how someone determining what is in in a person’s best interest must do so.
This Act is supported by the Mental Capacity Act Code of Practice. Further clarity will likely be provided by the joint publication of the General Medical Council, Royal College of Physicians, and British Medical Association, of in-depth guidance on good professional practice for making decisions about CANH. This is expected to be published in October 2018. Interim guidance has been published in the meantime. This guidance is likely to follow Y closely, particularly regarding how decision making should happen. This is outlined at paragraph 124 of the judgment.
Finally, it is worth emphasising that a best interests decision is not entirely a medical decision. Elements of that decision, such as considering as far as reasonably possible the patient’s past and present wishes and feelings, invoke an ethical dimension to the decision that medical professionals might not be uniquely qualified, nor best placed, to make.
Clark Hobson is a lecturer at the University of Leicester, UK.
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