Adults without the capacity to make their own medical decisions have their rights protected under the Mental Capacity Act (2005) in the UK. The underlying principle of the court's decisions is the best interests test, and the evaluation of best interests is a welfare appraisal. Although the House of Lords in the well-known case of Bland held that the decision to withhold treatment for patients in a persistent vegetative state should not be based on their best interests, judges in recent cases have still held that the best interests of persistently vegetative patients demand that the right to die with dignity prevails over society's interest to preserve life. The basis of suggesting that it is in the best interests for one who is alive (although vegetative) in peace to die in peace is weak. Even if it may not be in their best interests to live on, it may not be so to die either. The phrase ‘the right to dignity/to die with dignity’ has been misused as a trump card to justify the speculation that a vegetative patient would necessarily refuse to live on machines. Without disrespect to the court's decision, we argue that the use of the best interests test to authorise withdrawing/withholding treatment from persistently vegetative patients without an advance directive is problematic. We propose that the court could have reached the same decision by considering only the futility of treatment without working through the controversial best interests of the patient.
- Legal Aspects
- Mentally Diasbled Persons
- Clinical Ethics
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Adults without the capacity to make their own medical decisions have their rights protected under the Mental Capacity Act (2005) (the Act) in the UK. The underlying principle of the court's decisions is the best interests test.1 The evaluation of best interests is a welfare appraisal.2 The court should strike a balance between the sum of gains against the sum of losses. Only if the account is in significant credit can it be concluded that a medical decision can advance the best interests of a patient. However, for patients in a persistent vegetative state (PVS) who would never experience the slightest discomfort, it is difficult to make any meaningful comparison between continued existence and death.3 Interestingly, a review of relevant case law shows that the UK courts are still using the best interests test to justify denial of life-sustaining treatment for patients in a PVS.4–6 We argue that, while the courts’ decision to allow withdrawal of treatment for patients in a PVS is correct, the best interests approach is flawed and should be avoided.
Relevant case law
The Bland case is a landmark. The 17-year-old Bland was caught up in a stampede when attending the Football Association Cup semi-final in 1989. He suffered brain damage from lack of oxygen due to a crush injury to his chest, and ended up in a PVS. There was consensus in the House of Lords that Bland had no best interests of any kind and that the decision to withhold treatment should not be based on his best interests.7 The court sanctioned withdrawal of Bland's treatment, which in the opinion of the medical profession offered him no clinical benefits. Lord Goff of Chieveley correctly pointed out that a doctor is not required to continue life-prolonging treatment in the best interests of a patient in a PVS when the futility of the treatment can justify its termination.8
However, such reasoning has not been rigorously followed in subsequent cases. In NHS Trust v D, Ms D had mitochondrial cytopathy to the extent that she was in a PVS and had no awareness of any kind. The doctors applied to the court for a declaration that it would not be in Ms D's best interests to try to prolong her life with invasive resuscitation if either her breathing failed or she suffered cardiac arrest or contracted a potentially life-threatening infection that would normally be treated by antibiotics. The most relevant question was ‘Are there any advantages to this patient in attempting by the use of very invasive procedures to prolong her survival beyond that which will naturally occur?’ The court held that there was none and Ms D's best interests demanded that she should be allowed to die peacefully and with dignity.4
In A Hospital v W, because W was in a PVS after a cycling accident, Sir Mark Potter held that it would not be in W's best interests to continue life-sustaining treatment and that such measures could be lawfully withdrawn.5
In Re D, a 55-year-old man, Mr D, developed a swelling in his thyroid gland for which he underwent an operation in May 2011. In the course of the procedure, Mr D had a cardiac arrest after which he suffered severe and irreparable brain damage. He ended up in a PVS. Mr Justice Peter Jackson held that allowing Mr D to ‘die with dignity and with as little suffering as possible’ served his best interests.6 Although both Sir Mark Potter and Mr Justice Peter Jackson considered futility of treatment in their analysis, the best interests test underlay their decisions to allow withdrawal of treatment.
The best interests of patients in a PVS
One would not dispute that a patient in a PVS no longer has any quality of life. For someone with no cognitive function and no prospect of ever recovering such capacity in this world, we contend that it must be a matter of indifference whether he or she lives or dies. There should be no room for the court to hold that denial of life-sustaining treatment is in the best interests of a patient in a PVS even with reference to ‘the right to dignity’ or ‘the right to die with dignity’.
The right to dignity
It is trite that one's dignity should be treated with utmost respect. Dignity is a word to describe the very inherent and inalienable rights of everyone, especially vulnerable people, to be treated with equal respect and equal treatment.9 The dedicated medical professionals in our country have always endeavoured to keep vegetative patients alive in the most dignifying manner. In the premise, when asking for a life-prolonging treatment to be withdrawn, one simply exercises the right to refuse treatment rather than complaining that the patient has not been treated with dignity. Refusal of treatment is an entirely personal choice and should be distinguished from a claim for dignity. While the assertion of the right to die appears to be in sharp conflict with society's interest in preserving life, qualifying the right to die with ‘dignity’ may not be appropriate. In any event, who else, apart from the vegetative patient himself or herself, is entitled to suggest that to die can ever be more dignified than living on machines? Because one almost certainly has a valid claim for dignified treatment, associating ‘the right to die’ with ‘dignity’ may deceptively add value to the claim with a view to outplaying preservation of life. We submit that the phrase ‘the right to dignity/to die with dignity’ has been misused as a trump card to justify the speculation that a vegetative patient would necessarily refuse to live on machines.
One may suggest replacing the phrase ‘to die with dignity’ with ‘to die in peace’. However, how might one substantiate the claim that it is in the best interests for one who is alive (although vegetative) in peace to die in peace? Whereas it may not be in their best interests to live on, it may not be so to die either.
Conditions worse than death
We can all imagine different conditions in which we would rather die than live. And it is tempting, but objectionable, to suggest that relief of extreme pain and distress, even at the expense of life, can be in a patient's best interests. In the case of K (a minor), K was born prematurely with congenital myotonica dystrophy and was critically ill on a mechanical ventilator and broad-spectrum antibiotics. She had very poor prognosis while demonstrating no pleasure in a life dominated by regular pain, distress and discomfort. Continuing parenteral nutrition would aggravate her distress and discomfort, and was not likely to improve her quality of life. Sir Mark Potter allowed withdrawal of parenteral nutrition.10 Even so, the basis of the decision was futility given the inability of any treatment to reverse the condition predominated by regular pain, distress and discomfort.
As Lord Keith of Kinkel said in the case of Bland, ‘it is for an individual and only that individual, to decide that a life is no longer worth living’.11 Paternalistic assessment of a patient's quality of life is plainly inconsistent with the principle of self-determination. To ever decide on behalf of a patient that to die is better than to live or that death is in a patient's best interests is a grave violation of a patient's autonomy.
In the presence of an advance directive
There is no doubt about the best interests of patients when there is a binding advance directive (AD). As Munby J said in Re (Burke), if a patient (although now incompetent) has previously made a binding AD, the patient decides what is in his best interests and what treatment he should and should not have.12 It cannot be overemphasised that, in light of a binding AD, should the patient refuse life-sustaining treatment and subsequently become permanently unconscious, not only is it lawful for the attending physician to withdraw treatment, it would be unlawful not to do so. In short, the decision to end the life of a patient in a PVS based on the best interests test is sustainable only in the presence of a valid AD.13
Futility of treatment
Without disrespect to the court's decision to authorise withdrawal/withholding of treatment for patients in a PVS, we merely propose a consistent approach for the court to reach the same conclusion in line with existing legal and ethical principles. In fact, a medical practitioner is under no legal duty14 to continue a treatment, ‘where it is the doctor's clear professional view that such treatment would provide the patient with no clinical benefit or would be futile’.12 A treatment may be futile should it offer no reasonable benefit or should the potential risks far outweigh the expected benefits.15 One must bear in mind, furthermore, that the question is always whether the treatment would be futile, not whether the patient's life would be worthwhile. In the absence of a binding AD, withdrawal of treatment for a patient in a PVS could be appropriate based on the futility of the treatment without resort to the best interests of the patient.
While the court is entitled to a professional opinion as regards the futility of a treatment so far as it can withstand logical analysis,16 critics might argue that the futility of a treatment relies too much on the subjective assessment of individual medical practitioners. As a risk for someone might be considered a benefit by someone else, a risk–benefits assessment may not satisfactorily underlie the assertion that a treatment is futile. Such a view of relativism has ignored the principal duties of medical practitioners. While it is entirely valid to argue that not everyone would consider it a benefit to live for a long time, the essence of medical care is to pursue a well-recognised common goal to promote health and relieve suffering. It is on this principle that the ethical and legal duties of medical practitioners are based. To pursue something deviating from these core values would be beyond the remit of the duties of medical practitioners.
Of course, ethicists have not yet agreed upon the definition of futility. Schneiderman et al17 suggested that futility measured according to a qualitative parameter refers to any treatment that merely preserves permanent unconsciousness or that fails to end total dependence on intensive medical care. In the mid-1990s, the American Medical Association stated that ‘since definitions of futile care are value-laden, universal consensus on futile care is unlikely to be achieved’. Since then, there has been a switch to the process-based procedural approach to resolving futility disputes.18 However, such an approach was criticised for disguising futility as a criterion of distributive justice for rationing of healthcare. Moratti pointed out, and we agree, that futility should pertain exclusively to the appropriateness of treatment for an individual patient, and expensive interventions should not be labelled futile to justify denial to certain patients on the grounds of lack of resources.19 Although the latest development of futility pinpoints the importance of better communication and negotiation, the fact remains that negotiation may still fail with intractable conflict.20 Suffice it to say that intervention should not be given if there is a general consensus in the medical profession that a treatment is futile.
There are instances where, considering the invasive nature of a treatment, the risks of bodily injuries, and the poor quality of life achieved even if the treatment is successful, doctors may have different opinions as to whether a treatment is futile or not. It is important that the medical profession continue to evolve new strategies for resolving the questions of futility. However, the fact that there is no consensus on the definition of futility should not undermine its value. At the extremes of the continuum, medical practitioners would unanimously agree that some treatments would apparently be too risky to apply and others would offer no clinical benefits at all. It is noteworthy that the House of Lords have held that existence in a vegetative state with no prospect of recovery is regarded by the medical profession as not being a benefit, and this forms a proper basis for the decision to discontinue treatment and care.21 In other words, futility alone is sufficient to justify withdrawal of life-sustaining treatment for patients in a PVS. With this in mind, and considering that patients in a PVS have no interests that can be furthered by dying with dignity, the UK courts should consistently refrain from the best interests test for similar cases in the future.
Ought the court to authorise withdrawal of treatment for patients in a PVS? There is no easy answer from moral perspectives. Moral issues aside, we merely aspire to explore the reasoning in the recent decisions of the UK courts. The use of the best interests test to authorise withdrawing/withholding treatment from patients in a PVS without a binding AD is at least arguable if not fallible. Although the discussion on ‘dignity’ has become commonplace in the moral and legal debate concerning life and death issues, the word has also been abused to evoke emotional resistance about allegedly ‘undignifying’ treatment rather than inviting serious reflection on the issues. That said, we have no objection to passive euthanasia for patients in a PVS. It is only that the same conclusion needs a stronger foundation. In a nutshell, we propose that the UK courts should refine their approach by considering only the futility of treatment rather than working through the controversial best interests of the patient.
Contributors TKC participated in literature research, legal analysis, ethical assessment and writing of the manuscript. GLT participated in the ethical assessment and writing of the manuscript.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.