Sedation, Communication and Compromise: A British Perspective

What is a good death? What does it mean for a patient to die well — for the patient himself or herself, the professionals caring for that patient, and for the patient’s loved ones? Andrew’s story illustrates how difficult these questions can be to answer but also how important they will be, ultimately, for each of us. In this commentary, I offer a British perspective, which seeks to develop the sensitive handling of Andrew’s situation by his team and which — for the most part — echoes and reinforces the author’s analysis. Viewing the issues initially through the prism provided by English law and practice,¹ I consider the obligations to respect the autonomy of the patient and to serve the patient’s best interests, and in turn, how these give rise to significant ethical questions about the value of life. Mindful of the problems in adjudicating between the various competing principles, I conclude with a plea for open communication and a willingness to countenance compromise in cases of ethical conflict.

Respect for Autonomy

It is conventional, at least when dealing with an adult patient, to start by considering what that patient might want — or, just as importantly, what they might not want. Respect for autonomy is a (perhaps the) central principle in English medical law. The dominance of this principle over ethical discussions in the developed world has not gone unnoticed (Gillon 2003), but neither has it gone unchallenged. What it means to respect the wishes of an autonomous individual certainly requires careful consideration (Stirrat and Gill 2005). Automatic acquiescence with any stated wish (or whim) is probably not sufficient, but whether the principle should be tied to the values and beliefs by which the individual lives (or has lived) his or her life or whether it requires anchoring in some more objective account of the “good life” remains a contested issue (Coggon 2007).

If, for present purposes, we accept the former view, then we can understand autonomous choice as that which corresponds with the patient’s worldview. Core values can often be glimpsed, against which available options might be judged: in Andrew’s case, those beliefs, drawn from his mixed Chinese and Indian heritage, could provide the necessary clues. But, as this combination itself might begin to suggest, a worldview can encompass a wide range of sometimes competing ideas and ideals (Benjamin 1990). How are we to navigate a route over this terrain? Sometimes the answer might be (or at least seem) clear, such as where the patient is currently capable of stating his wishes or where he has issued a directive prepared in advance. English legislation now provides explicitly for such statements in relation to the refusal of treatment (Mental Capacity Act 2005, ss. 24–6). Less formally, a patient’s views might be gleaned through “advance care planning”, as seems to have been the case in Andrew’s situation, when he “voiced the wish to remain alert for as long as possible and to be nursed in his own home in the bosom of his family”. Given that we have a record of this discussion, one might think that the dilemma dissipates; with respect for autonomy as our guide, Andrew himself has already given us the roadmap. The problem is that the signs and symbols on this map invite further interpretation. How far does “as long as possible” extend? Is it being at home or being within “the bosom of his family” that matters most to Andrew?

Matters become even trickier in the absence of any such statements. Efforts to respect autonomy might then encompass the “substituted judgement” (an attempt to decide as if one was the particular patient who is currently incapable of deciding) or “presumed consent” (to which the author refers). Whether such methods substantially advance the principle of respect for autonomy is open to question. Substituted judgements will be unavailable for patients (unlike Andrew) who have never been capable of stating their wishes or values. There is also the risk that presumed consent might be too presumptuous. Lingering questions about the principle and its application in cases like Andrew...