We are grateful to the commentators on our article1 for their thoughtful engagement with the ethical and clinical complexity of expanded terminal sedation (ETS) in end-of-life care. We will start by noting some points of common ground, before moving on to the more challenging ways in which TS might be permissibly expanded. First, several commentators pointed out, and we completely concur, that it is important to provide patients with full information about their end-of-life options, including the ‘outcomes, uncertainties and costs (...) of ETS’.2 Where possible, they should be given time to ‘process their feelings and to reflect on how they wish to live in their last few days, weeks or months’.3 Furthermore, where patients receive sedation, it will be critical that they receive appropriate medical and nursing care to prevent physical complications such as pressure ulcers.2 This would be no different from other patients who are in states of reduced consciousness from disease. We acknowledge that there are heightened risks with earlier and more rapid TS, including the potential loss of spiritual and social moments,4 as well as the meaning that can be derived from conscious existential distress.3 However, while these conscious experiences might be valuable to some, others might weigh them less highly against the foreseen …. (shrink)

Gilbertson, Savulescu, Oakley and Wilkinson propose extending the availability of terminal sedation (TS) to patients with intractable pain and/or suffering who are expected to live more than 2 weeks (hence the designation of extended TS (ETS)) and to patients whose values are known but who do not have decision-making capacity.1 Their plan is worthy of serious consideration: it is, after all, based on the fundamental and well-recognised medical ethical values of patient autonomy and beneficence. But, even when restricted to jurisdictions (...) that allow assisted dying, the ETS proposal raises three important issues. When the authors speak of ‘assisted dying’ and of ‘Voluntary Assisted Dying (VAS)’, they refer specifically to the laws in Australia and similar ones in New Zealand, the Netherlands, Belgium, Luxembourg, Switzerland, Spain and Canada that permit clinicians either to provide patients with lethal medications for self-administration (formerly called physician-assisted suicide) or to administer lethal medications themselves (voluntary euthanasia). First, the authors distinguish—as do many patients and the public—between sedation to unconsciousness and death. Indeed, as the authors point out, the difference seems obvious: unconsciousness can be reversed, death cannot. Yet in the case of TS, this may be …. (shrink)

Gilbertson et al present a considered analysis of the abstract problem of ‘sedation’ at the end of life,1 and it is reassuring to see the separation of multiple practises that are often grouped under the heading terminal sedation. In their work, the authors attempt to introduce and justify a new practice in the care of those dying with significant suffering—expanded terminal sedation (ETS). This analysis will not, however, help our colleagues at the bedside. Here, we will focus on the flaws (...) which are most relevant to clinicians: jurisdiction, uncertainty and reversibility. The authors’ focus on a jurisdiction that does already allow medically assisted in dying confuses their analysis. For example, either an instance of their proposed ETS does amount to intentionally hastening death, in which case it should be treated as a means of euthanasia and practised only where that is permitted, subject to its limits and regulations; or it does not amount to intentionally hastening death, in which case there is no reason to specify such jurisdictions. To explain that the most controversial elements of terminal sedation have been tacitly ‘accepted’ by the society in question does not invalidate the concerns. It is beyond the scope of this response to explore these, but to us, …. (shrink)

Gilbertson et al should be commended for their insightful exploration of expanded terminal sedation (ETS)1; however, there are a number of concerns that I will address in this response. I will first better characterise the currently accepted and commonplace ‘standard’ TS (STS), and then argue that the advocated forms of ETS draw very close to—and at times clearly constitute a subtype of—euthanasia, as opposed to representing a similar but separate practice. I will then conclude with concerns regarding the inappropriate application (...) of ETS, particularly in the non-voluntary context. Gilbertson et al distinguish ‘gradual’ TS, which they state is the currently accepted form of TS, from ‘rapid’ TS, which is then argued to be a justifiable form of ETS. However, in my experience working in multiple large public teaching hospitals in New South Wales, Australia and consistent with local clinical practice guidelines,2 3 STS falls somewhere in the middle between ‘gradual’ and ‘rapid’ TS. STS explicitly aims to achieve permanent unconsciousness so as to eliminate the potential for (and therefore relieve) suffering; conversely, lighter or more intermittent forms of sedation, or administering sedatives with aims other than to achieve unconsciousness (eg, anxiolysis), do not constitute TS proper. STS uses doses proportionate to the extent of symptoms so as to avoid ‘overshooting’ and inadvertently administering excessive doses which actually hasten/cause death, in order to distinguish STS from euthanasia in this respect. This is achieved by gradually uptitrating doses when the patient appears distressed, and is therefore by definition …. (shrink)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief response, we critically engage Gilbertson (...) et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)