"Family Lose Right-to-Life Case at U.K.'s Highest Court." "Judges 'Right' to Allow Man to Die." "Widow Loses 'Withdrawn Treatment' Case." These were the headlines on a recent Supreme Court decision in the U.K. about end-of-life decision-making for a patient in a minimally conscious state: Aintree University Hospitals HNS Foundation Trust v James  UKSC 67. This is a particularly significant decision because it is the first case to come before the U.K.'s highest court under the Mental Capacity Act 2005.
It’s a long, sad, complicated story about disagreement between a family and a hospital about whether or not particular medical treatments were appropriate. The patient, David James, died of a cardiac arrest after the Court of Appeal declared that it was legal to withhold cardiopulmonary resuscitation. His widow appealed to the Supreme Court, which dismissed the appeal on the grounds that the Court of Appeal had reached the right conclusion, albeit for the wrong reasons.
In the U.K. competent patients have the right to refuse treatment: medical treatment without the competent patient’s consent could constitute a criminal offence. However, competent patients do not have an equivalent right to demand treatment: physicians are under no obligation to provide treatment that they consider futile. This is similar to the situation in the U.S. Where the U.K. and the U.S. laws diverge is in the treatment of patients who have lost capacity. English law requires physicians to act in the “best interests” of such patients instead of relying on the “substituted judgment” of a surrogate.
Families in the U.K. do not have the right to make decisions about medical treatments (or anything else) for adult patients lacking capacity unless they have taken specific legal action to acquire the right (and very few people do – or are even aware that they can). Therefore, it is usually the responsibility of the senior treating clinician to decide what treatment to give, as well as what treatment to withhold/withdraw for patients without capacity to make their own choices. Although clinicians in the U.K. are supposed to take into account the patient’s prior expressed wishes, values, and beliefs as part of their “best interests” decision-making, such wishes do not legally determine treatment. In practice, this means that clinicians – and the courts - often make decisions opposite to those which (according to family reports) patients would have made for themselves.
One such case in the English courts, which we discussed in our previous post, was W v M (2011) EWHC 2443 (COP). On the face of it, this earlier case and Aintree v James are very similar. Both relate to disagreements between a family and a hospital about medical treatments for a minimally conscious patient. In both cases, the courts made decisions opposite to the ones that, according to the families, the patients themselves would have made. In Aintree v James the judgment was ultimately that it was legal to withhold treatment even though the patient probably would have wanted it. In W v M, the judgment was that treatment must be continued even though the patient probably would have wanted to refuse it.
Despite the clear parallels between Aintree v James and W v M there are striking differences in the reasoning applied – and these differences are significant in clarifying key principles from the Mental Capacity Act 2005. The family of David James, although clearly angry and distressed by losing their appeal, is fairly positive about the Supreme Court ruling. As his daughter, Julie James, told BBC News, although they lost the case they “won the argument.”
An important part of the argument won and the principle asserted is a renewed focus on what the patient would have wanted. Not an imagined “reasonable” patient – but this patient, with his own particular personality, values, wishes, beliefs, commitments, and relationships.
It seemed clear that David James – despite the medical problems that beset him – was pleased to be alive. He was remarkably psychologically resilient and showed no signs of being depressed or upset by his condition. His wife said he got pleasure from seeing family and friends. His daughter said he was interested in family news and music. He smiled when told that his wife had telephoned, laughed when a nurse sang to him, and seemed to enjoy watching videos on his son’s phone. His wife reported how he had responded to cancer a decade before – with determination that “this will not beat me.” She believed that he would feel the same now and would want to live as long as he could.
Before the case reached the Supreme Court it had been considered in two other courts. First, in the Court of Protection, where the judgment by Justice Peter Jackson supported the family, Jackson judged that treatment, including CPR, would not be futile because it might be successful in enabling David James to continue with a quality of life that he would regard as worthwhile. He quoted the words of a judge in another recent case that “a life from which others may recoil can yet be precious.”
When the hospital appealed, the three judges in the Court of Appeal were unanimous that the trial judge had erred and that CPR (and some other treatments) could be legally withheld. According to two of the judges, these treatments would be futile because they would not restore David James to “such a state of good health as will avert the looming prospect of death.” If David James had capacity and “full informed thought” he would understand that “his position was hopeless.” One of the judges, Lady Justice Arden, argued that the court “should proceed on the basis that the individual would act as a reasonable individual would act,” which in her view meant that David James (contrary to the views of his family) would reject the treatments.
We are relieved to see that this line of reasoning was roundly rejected in the Supreme Court. Reading the judgment, we feel optimistic that case law is moving in the right direction in interpreting the Mental Capacity Act 2005 in ways that take the incompetent patient’s prior (and current) wishes, values, and beliefs (whatever they are) more seriously. The Supreme Court emphasized that “the purpose of the best interests test is to consider matters from the patient's point of view” – meaning the view of the actual patient and not a theoretical “reasonable” patient. Lady Hale, who wrote the Supreme Court judgment with which all the other judges agreed said:
“It is not for others to say that a life which the patient would regard as worthwhile is not worth living.” She pointed out that where a patient is suffering from an incurable illness, disease or disability, “it is not very helpful to talk of recovering a state of ‘good health.’ The patient's life may still be very well worth living.”
And she underscored the centrality of the patient’s perspective: “Insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being.”
Although neither David James, nor the patient in W v M were treated medically as they would have wished, the reasoning behind these two court decisions reads very differently. In W v M the judge stated that, while he took the patient’s prior statements into account, “I do not consider they carry substantial weight in my decision.” By contrast, Lady Hale gave them considerable weight and emphasized their centrality (even as she made a decision which supported withholding the treatments the patient had wanted on the grounds that his condition had deteriorated significantly since the earlier court decisions and that courts cannot compel doctors to give treatments against their professional judgment).
As part of our research in the York-Cardiff Chronic Disorders of Consciousness Research Centre we have interviewed more than 50 people with family members who are (or were) in a vegetative or minimally conscious state. Some, like David James’ family, believe that their relatives would want every treatment possible to keep them alive. Others, like the family in W v M, believe that their relatives would want to be allowed to die. All these families should be heartened by the Supreme Court judgment with its renewed focus on putting the patient’s own values at the center of medical decision-making.
Celia Kitzinger is a professor of sociology at the University of York. Jenny Kitzinger is a professor of communications research at Cardiff University. They are codirectors of the York-Cardiff Chronic Disorders of Consciousness Research Centre in the U.K.