By Mackenzie Graham

On July 30, The UK’s Supreme Court ruled that there is no requirement to obtain court approval before withdrawing clinically assisted nutrition and hydration (CANH), when there is agreement between physicians and the family that this is in the best interests of the patient.

In the judgement, Lady Black writes:

“If the provisions of the MCA [Mental Capacity Act] 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.”

Until now, requests to withdraw CANH needed to be heard by the Court of Protection to determine if withdrawing treatment was in the patient’s best interest. In addition to being emotionally difficult for families, this is a time-consuming and expensive process, and often results in the patient dying before a judgement is rendered.

I think this decision has much to be said in its favour. First, it means that when there is agreement that continued treatment is no longer in the best interests of a patient with a prolonged disorder of consciousness, these patients are no longer being ‘forced to live’ until the Court affirms that being allowed to die is in their best interests. In many cases, court decisions take months, meaning that a patient is forced to be kept alive, against their best interests and the wishes of their family. Making the decision to withdraw care from a loved one is highly distressing, and this is likely further compounded by the burden and distraction of court proceedings.

Second, rather than protecting a patient’s best interests, the need to go to court might influence both families and physicians in ways that will frustrate the best interests of the patient. On the one hand, a desire to avoid going to court might lead physicians or the patient’s family to maintain CANH when doing so is no longer in the patient’s best interests. Similarly, it is possible that the legal hurdles associated with withdrawing CANH might induce physicians or patients to forego CANH in the first place. Patients who may have gone on to recover may not receive the best possible treatment, because of a reluctance to start an intervention that would be difficult to stop. By allowing physicians and families to more easily withdraw CANH, they may be less reluctant to pursue more aggressive therapy at the outset, knowing that they have greater flexibility in their options, should the goals of treatment change.

Third, removing the need for court approval expedites the process of allowing patients to exercise their rights, via surrogate decision-makers. Every patient has the right to refuse unwanted medical interventions. This right is based on the right to self-determination and bodily integrity. A competent patient can refuse the provision of CANH at any time, even when doing so will result in their death. It is unethical for the courts to compel a patient to accept medical intervention, when physicians and surrogate decision-makers acting on the patient’s behalf have judged that this is not in the patient’s best interests, given their previous values, desires, or wishes.

Fourth, this decision affirms that it can be in a patient’s best interests to die. The central argument of the Official Solicitor in this case was that “only by requiring judicial scrutiny in every case concerning the withdrawal of CANH from a patient suffering from prolonged disorders of consciousness can human life and dignity be properly safeguarded.” This suggests that the judgement of physicians and families —appealing to regulations like the Mental Capacity Act 2005— are inadequate to fully ensure the best interests of patients.

The basic protective structure for patients who lack decision-making capacity is laid out in the Mental Capacity Act 2005. In the Act, decisions made on behalf of a person lacking decision-making capacity must be made in their best interests, taking into account their past wishes, values, feelings, and other factors the person would consider if they were able to do so.

There is some concern that removing the courts from these decisions defers too much to the views of physicians about what is in a patient’s best interest. Physicians are experts in medicine, and can speak authoritatively to the medical interests of the patient. But ‘best interests’ in the sense referred to in the Mental Capacity Act 2005 goes beyond a patient’s medical interests; it requires a holistic account of what is a good life, for them.

Physicians are likely to have their own biases about whether a patient’s life is worth living, and it is possible that these may influence surrogate decision-making. It is impossible for physicians to remain completely objective —to explain only the medical facts to families— but it is not clear that this is what surrogate decision-makers want from physicians. They may welcome some guidance in decision-making, as this may ease the burden of an incredibly difficult decision. Nevertheless, withdrawal of CANH cannot occur without the approval of the surrogate decision-maker; their insights into the prior values, wishes, and beliefs of the patient continue to play a critical role in an evaluation of the patient’s best interests.

Indeed, it is unclear that the courts are capable of being any more ‘objective’ than physicians about whether withdrawal of CANH is in a patient’s best interests. Requiring court approval to remove CANH from a patient suggests that the role of the court is to ensure that withdrawal is occurring ‘for the right reasons’. (The language of the Official Solicitor regarding the value of human life and dignity is revealing here). It is unclear to me what gives the court the insight to know —better than physicians or the patient’s family— what is in the best interests of the patient.

On the one hand, if a patient is suffering incredible pain with no possibility of recovery, this seems to be a clear case in which it would be better for the patient to be allowed to die. But this is a clear case not because there is some objective fact of the matter for the courts to uncover, but because in a case like this, decision-makers can be reasonably confident that death is most consistent with the patient’s desires, values, or prior wishes.

Patients with prolonged disorders of consciousness are challenging, because it is less clear what their experience is actually like, and thus, whether continued treatment to keep them alive is in their best interests. It is unclear if patients with prolonged disorders of consciousness experience pain. Research suggests that patients in a persistent vegetative state cannot feel pain, whereas patients in the minimally conscious state are capable of experiencing pain, though it is less clear that existing in this kind of state is inherently painful.

The relevant question is whether these patients are benefitting from continued treatment. For patients with prolonged disorders of consciousness, who are medically stable but highly unlikely to recover consciousness or cognitive function, this question amounts to asking if their lives are worth living, for them. If they are incapable of experience, it is unclear how continued life could be beneficial; they cannot be harmed or benefitted. In this case, treatment should be removed because it is no longer beneficial. If they are capable of only very limited experiences, but these experiences are sufficiently beneficial to outweigh the burdens of continued treatment, an argument can be made in favour of providing it. Here, physicians are best positioned to describe what the patient’s experience is like, while the patient’s family and close relations are best positioned to judge whether this is the kind of life the patient would want. Again, it is unclear why the courts are required to render a judgement about whether these benefits and burdens have been weighed up properly, particularly when families and physicians agree.

This judgement is not a step towards giving physicians unilateral discretion over what constitutes a patient’s best interests. It is an acknowledgement that the patient’s family, in concert with physicians, are in the best position to judge what is in the best interests of the patient, even when this means allowing the patient to die.

I think that much of the apprehension about removing CANH from patients with prolonged disorders of consciousness stems from the psychological and emotional associations we have with eating and drinking. The idea that we would ‘starve’ a loved one is horrifying. But the provision of CANH is not the same as nurturing a baby, or sitting down to a meal with family. CANH, though sometimes necessary to keep patients alive, is a highly invasive medical intervention. It can lead to infection and a variety of other negative complications, depending on the type used. Conversely, research suggests that dying as a result of dehydration (the typical cause of death after the withdrawal of CANH) is not painful, and any discomfort can be easily alleviated. Rather than being a cruel or barbaric means of ending the life of a loved one, withdrawal of CANH is actually a compassionate means of allowing someone to die.

A possible objection here is that we can’t be sure that a diagnosis of a prolonged disorder of consciousness is actually correct. Several recent studies have shown that patients are often misdiagnosed as being in a vegetative state; patients who appear behaviourally non-responsive may retain sophisticated cognitive capacities. Rather than risk killing these patients, who may benefit from continued life, we shouldn’t withdraw treatment from any patients with prolonged disorders of consciousness.

(This kind of objection could be raised whether court approval was required to withdraw CANH or not. In the 2016 case Briggs v Briggs, the court found that it was in the best interests of a minimally conscious patient to be withdrawn from CANH; the fact that a patient remains conscious doesn’t make their lives worth living, even in the view of the courts.)

At present, some degree of uncertainty about the diagnosis (and prognosis) of patients with prolonged disorders of consciousness is unavoidable. Indeed, even with court approval, it is possible that withdrawal of CANH could turn out not to have been in the best interests of the patient. But it is also possible that a court decision to prevent the withdrawal of treatment could turn out not to be in the best interest of the patient. The decision to withdraw CANH from a patient is undoubtedly a difficult one, and one that isn’t taken lightly by physicians or families. The best that can be done is to consider all of the relevant information, and try to make an honest, compassionate judgement about what is in the best interests of the patient. By allowing these decisions to be made between physicians and families, and carried out in a timely fashion when agreement is reached, the Supreme Court’s judgement rightly puts the interests of the patient first.