Disclaimer: The views expressed are that of the individual author. All rights are reserved to the original authors of the materials consulted, which are identified in the footnotes below.
By Shayahi Kathirgamanathan
Section Editor for Medical Law & Ethics
In Cruzan v Director, Missouri Dept. of Health, Justice Scalia famously commented on “the constantly increasing power of science to keep the human body alive for longer than any reasonable person would want to inhabit it.”[1] Advancements in healthcare within the last century have enabled the lengthening of the later stages of human life in ways which were unimaginable previously. But difficult questions about the quality of life vs the quantity of life have accompanied this progress, and whether we are preserving the latter at the cost of the former. Courts and healthcare professionals alike have had to grapple with the ethical implications of end of life decision making, and this is especially apparent within the context of advance decisions.
s24 of The Mental Capacity Act 2005 (MCA) defines an advance decision to refuse treatment as a decision, made by an individual aged 18+ at a time when they have the capacity, that a specified treatment is not to be carried out or continued in the event of future incapacity. Thus the MCA does not give binding force to advance directives generally but recognises that an individual has the ability to produce a valid and applicable advance refusal of treatment if incapacity arises.[2]At first glance, this would seem to accord with the overarching spirit of the MCA to empower those without capacity, and ‘place them at the heart of the decision-making process’.[3]
However, Halliday argues that in reality, the legislation works to undermine an individual’s precedent autonomy.[4]A heavy presumption in favour of life means that there is often a high threshold for an advance directive to be deemed valid and binding, especially in the case of refusals to life-saving treatment. This is demonstrated through the form and specificity requirements. The MCA introduced form requirements for advance refusals concerning refusals life-saving treatment in s25, which include the need for a written and signed statement or decision, and the presence of a witness. An advance refusal must also be sufficiently specific to address the situation which has arisen, or else it may be disregarded, as seen in cases like W Healthcare NHS Trust v H.[5] Moreover, healthcare professionals possess a ‘substantial degree of discretion’ to determine whether an advance refusal should stand or not- and there is little guidance as to how this to be exercised.[6]
It seems apparent that the current approach, which is driven by a heavy presumption in favour of life, towards advance decisions does seem to compromise patient autonomy. Arguably, if a patient has expressed their wishes about the way in which they wish to end their life, this should be facilitated and respected as far as practicably possible. On the other hand, a more stringent approach is defensible according to the sanctity of life doctrine, wherein each human life has inherent value. Moreover, the alternative of a lower threshold may be difficult to justify as it draws healthcare professionals into having to make determinations about the quality of life. Any deviation from the role of healthcare professionals as primarily healers could simply lead to unwanted confusion.
I would argue that the high threshold for a binding advance decision should remain, owing to the inherent value of each human life; a lower standard would not appropriately reflect the gravity of the decision being made. Alongside this, however, it is imperative that there is greater public awareness of the potential of advance decisions to protect the precedent autonomy of individuals, so that they can be drafted in a manner which properly adheres to the necessary form and specificity requirements. Of course, not every situation which could conceivably arise in the event of incapacity can be addressed by an advance decision, but the wider point is that we ought to be prepared for the events we can foresee, at the very least.
Moreover, to achieve wider and more effective use of advance decisions, we need to foster a culture wherein we can readily engage in uncomfortable, but necessary dialogue about end-of-life decision making, between loved ones, as well as between patients and healthcare professionals. In his book, ‘Being Mortal’, the American surgeon Atul Gawande writes that society’s failure to ‘honestly examine the experience of ageing and dying has increased the harm we inflict on people and denied them the basic comforts they most need’. Our hesitancy to confront the reality of end-of-life decisions is perhaps the most significant reason why advance decisions are under-utilised. Thus, in order to gain the intended advantage of precedent autonomy from advance decisions, and to ensure the wishes of patients regarding medical treatment can be expressed where possible, we must first acknowledge and answer difficult questions about the end of life.
Sources
[1] (1990) 110 S. Ct. 2841, 497 (Justice Scalia)
[2] Sam Halliday, ‘Legislating to give effect to precedent autonomy: comparative reflections on legislative incompetence’ (2011) Medical Law International, 11 (2). 2. 127 - 171, 130
[3] Department for Constitutional Affairs, Mental Capacity Act 2005 Code of Practice (2007) Foreword
[4] (n 3) 127
[5] [2005] 1 WLR 834
[6] (n 3) 131
[7] Atul Gawande, Being Mortal: Illness, Medicine and What Matters in the End, (Profile Books Ltd, 2nd edition, 2015) 9
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