Background

A testimony to the increased importance of palliative sedation has been the recent production of clinical guidelines on its use in several countries, for example, in The Netherlands in 2009.1 The same year, the European Association for Palliative Care (EAPC; www.eapcnet.eu) released what it calls a ‘recommended framework for the use of sedation in palliative care’,2 authored by Nathan Cherny and Lukas Radbruch; the latter was until recently President of the EAPC. Niklas Juth and colleagues address this framework in a paper in 2010.3 In doing so, they also partially quote from the EAPC's 2003 position paper on palliative care and euthanasia, of which I am the first author.4 (The paper, commentaries to it in the journal Palliative Medicine, translations of it into several languages, as well as other responses may be downloaded for free at the EAPC website: www.eapcnet.eu/Themes/Ethics/PCeuthanasiataskforce/tabid/232/Default.aspx; accessed 11 Dec 2011.) The present article will not address any detailed criticisms of the specific content of the EAPC framework, but focuses on the broad principles behind palliative sedation.

Palliative sedation and euthanasia

The EAPC ethics task force paper on palliative care and euthanasia states (italics in original):4 ‘Terminal’ or ‘palliative’ sedation in those imminently dying must be distinguished from euthanasia. In terminal sedation the intention is to relieve intolerable suffering, the procedure is to use a sedating drug for symptom control and the successful outcome is the alleviation of distress. In euthanasia the intention is to kill the patient, the procedure is to administer a lethal drug and the successful outcome is immediate death.

However, the EAPC's framework for palliative sedation paper of 2009 fails to mention the organisation's 2003 position paper from which this quotation is taken. This is striking, not least since the 2009 paper includes a discussion of palliative sedation being abused as ‘slow euthanasia’. Additionally, as can be seen from the above, and as Juth et al appropriately point out,3 the 2003 paper contains remarks on the notion of intolerable suffering that are open to interpretation—a notion that is crucial to the framework as well as key in their critique.

Juth et al disagree with the EAPC ethics task force as far as intention and outcome in palliative sedation and euthanasia are concerned—that is, they think there is no difference between the two clinical actions in these respects (italics in original):3 Palliative sedation is done for the sake of relieving symptoms and primarily intolerable suffering of different kinds. However, the same thing can be said about euthanasia for terminally ill patients: euthanasia is to knowingly kill a person by the administration of drugs, at that person's voluntary and competent request for the sake of relieving symptoms and primarily intolerable suffering of different kinds. The ultimate end of euthanasia is not to end the patient's life—i.e., that is not the sake for which the administration of drugs is done. Rather, the ultimate end is to relieve suffering by other means than palliative sedation.

But this line of reasoning is fundamentally flawed. Euthanasia is about ending life as a way to stop suffering, not about relieving suffering5 6—the latter being the practice of palliative care, within which low dose palliative sedation may be occasionally required.7 Others have committed the same category mistake, stating that the practices of euthanasia and palliation reflect a ‘common value’ as regards ‘the importance of reducing human suffering’.8 Just because the end-point is death, this does not mean that euthanasia and palliative sedation are moral equivalents. If someone's suffering is relieved it is in effect made lighter, or less severe, which may mean that it has been reduced to the point of becoming imperceptible. By contrast, in euthanasia imperceptibility of symptoms is achieved through a very different procedure: the act of killing the perceiver.

However, one might want to say that euthanasia is performed in order to prevent further suffering. True, but preventing is not relieving and so this rejoinder is inadequate.

Furthermore, Juth et al's conception of euthanasia is at odds with the Dutch understanding: ‘euthanasia is usually defined in The Netherlands as the administration of drugs by a physician with the explicit intention of ending the patient’s life at his/her explicit request'.9 The large-scale studies of Dutch medical end-of-life practice that have been carried out in 1990, 1995, 2001 and 2005 understand euthanasia in the same way.10 11 So the intention is indeed to end the patient's life—the patient is injected with barbiturates inducing coma, followed by neuromuscular blockers that cause respiratory muscle paralysis, with consequent anoxia and cardiac arrest—not to make the patient more comfortable. ‘The ultimate end of euthanasia is not to end the patient’s life', write Juth et al.3 But it is just that, the end or goal is part and parcel of the Dutch definition, which is now adopted as the international convention.6 12

However, to Juth et al ‘this presents a scurrilous portrait of euthanasia by giving the impression that its ultimate aim is to kill off the patient’.3 This is much more than an ‘impression’; it is what is actually happening. Griffiths et al note:13 ‘Euthanasia’ in the strict—and in the Dutch context the only proper—sense refers to the situation in which a doctor kills a person who is suffering ‘unbearably’ and ‘hopelessly’ at the latter's explicit request (usually by administering a lethal injection)… ‘euthanasia’ is in the Netherlands reserved for killing on request.

It may be added that in The Netherlands, ‘relief of suffering on request’ to denote euthanasia is unheard of. What is more, in a Dutch qualitative study of 22 primary care physicians, doctors described the emotional difficulties of performing euthanasia, including one who depicted himself as an ‘executioner’ and another who described euthanasia as ‘a rotten job’.14

Three levels of palliative sedation

An important paper in the field is by de Graeff and Dean 2007.7 It is a systematic review by an international panel of 29 palliative care experts. Juth et al quote it repeatedly, but fail to observe that de Graeff and Dean define various levels of palliative sedation: mild, intermediate and deep. Of these, only the third removes consciousness in its entirety.

Yet that does not make it impossible for the patient to be subsequently awakened; that is still possible, but might not be clinically appropriate.15 When the decision is made to maintain unconsciousness, the situation is what physician and clinical ethicist Georg Bosshard and I have called ‘deep and continuous palliative sedation’ (DCPS) in 2009.5 We are of the view that the traditional concept of ‘terminal’ sedation is more appropriate for this particular use of sedation because patients in DCPS are actually terminally sedated, as inducing sedation for the remaining time until death constitutes the closing, or the concluding, of any possibility of the patient having social or interpersonal interaction of any sort. Accordingly, this state has been called ‘social death’.7 This total loss of autonomy makes deep sedation ethically problematic. It also appears to conflict with a basic value of palliative care; the emphasis of experienced quality of life as life draws to a close.5 6

Although likening of palliative sedation with euthanasia, as suggested by Juth et al, breaks down as regards mild and intermediate palliative sedation, their view has some plausibility when considering DCPS. The argument is as follows: to palliate means to relieve, alleviate, or ease; when sedation is so deep that it removes the ability to be aware of any symptoms, palliation of symptoms is not really taking place. Such eradication of any ability to perceive symptoms also happens when euthanasia is undertaken.5 6 So a parallel exists: DCPS and euthanasia both end suffering, while lighter forms of palliative sedation do not—these relieve or reduce such suffering. Although the patient's symptoms are not relieved or reduced in DCPS, this is, however, an instance of control of suffering.

But a fundamental difference is that euthanasia ends both the patient's biological and social life; DCPS only does so to the latter, turning the patient into ‘a living dead’ since from the time of its induction the patient only lives in terms of continued basic vital functions.5

Does DCPS accelerate the dying process?

The life-shortening potential of palliative sedation is uncertain and may be non-existent, particularly when short periods of sedation or light sedation are employed as therapeutic interventions.7 That said, DCPS raises serious concerns with regard to side effects: it sets in motion a series of predictable, self-perpetuating pathophysiological events that could cause premature death.16

Are we in a position to know the statistical likelihood of dying being accelerated by DCPS? To gather evidence based data about this, it would seem that a randomised controlled trial (RCT) is needed. That way one could tell what group of patients lived the longest; those treated with DCPS versus those who were not. One hypothesis would then be that, contrary to conventional wisdom, patients' lives are extended, not shortened, with sedation, since inadequately treated very severe symptoms may shorten life.6 However, this research design would conflict completely with the clinical imperative to avoid serious undertreatment, as well as with the duty to treat all patients that experience such symptoms with every means available, including those of last resort, such as DCPS. Therefore this kind of research would be what Sykes and Thorns call ‘ethically impossible’.17 Accordingly, generalisable data on the actual life-shortening effect of DCPS may not be obtained using gold standard medical research methodology.

But even presuming one could, through the use of a different route, document that DCPS accelerates the dying process as an adverse effect, it would remain legitimate treatment due to the doctrine of double effect.5 6

Indications for DCPS, and border with euthanasia and medical murder

A more difficult, as well as controversial, issue is that of the indications for DCPS. Should these be broadened beyond the management of refractory physical symptoms, and, if so, where and how to draw the line?5 If patients whose very severe suffering is mainly of a psychological or an existential nature request, and receive, DCPS, due to the complications of DCPS there is an increased danger of life-shortening for those patients who are not close to death. Life-shortening might then even be most likely in particular cases, if not certain in any normal sense of the word—that is, short of the degree of certainty about this that a RCT could provide.

Still this would not amount to euthanasia because the intention remains the relief of suffering, even though DCPS is in fact control of suffering, and drugs are procedurally used for that purpose. It can be difficult to estimate what is the appropriate, titrated dose of drugs in particular patients due to inter-individual variation, and there might also be disagreement among staff what that dose is. Thus one sometimes risks overdosing. However, if overdosing is done on purpose upon the patient's request, what is asked for, and what is performed, is, according to the Dutch definition,9,–,13 euthanasia—albeit slow. If there is no request for this (no consent to it) but it is done anyway, it is not euthanasia but would in principle be (slow) murder according to the Dutch penal code.6 12

Rady and Verheijde write that ‘physician-assisted death includes medical interventions intended to shorten life or accelerate the dying process with or without consent’.16 In other words: medical murder too is a case in point of such ‘assistance’. They further conclude that DCPS ‘should be viewed as physician-assisted death that is different from the normal sedation practices used for palliation’.16 But as shown, DCPS does not involve interventions intended to cause premature death. It therefore does not fall under their definition of physician-assisted death.

Personhood and terminal sedation (DCPS)

One view, according to Juth et al is that ‘there is no morally relevant difference between the permanent loss of consciousness and death’, which, they state ‘has been forcefully argued elsewhere’.3 However, they neither clarify what such arguments are, nor explain what they find so ‘forceful’ about them, simply referencing philosopher and medical ethicist John Harris.18 The fundamental issue in addressing the clinical-ethical implications of DCPS hinges on philosophical interpretations of personhood; as such these can be traced to concepts written about philosophers like René Descartes, John Locke and Immanuel Kant.5

Does DCPS involve ‘killing’ of the person? According to Descartes and Locke, the answer may be ‘yes’, but to Kant and Harris it is probably ‘no’.5 Indeed, Harris states:19 The individual can be said to have come into existence when the egg is first differentiated or the sperm that will fertilise that egg is first formed. This individual will gradually move from being a potential or a pre-person into an actual person when she becomes capable of valuing her own existence. And if, eventually, she permanently loses this capacity, she will have ceased to be a person.

It follows that an individual undergoing DCPS is still a person, because the particular capacity mentioned by Harris is intact, just as it is during anaesthesia for surgery; it has not been permanently lost but is only suppressed by powerful sedative drugs. Hence, consciousness is not permanently lost. In claiming ‘there is no morally relevant difference between the permanent loss of consciousness and death’,3 Juth et al's view of DCPS is not supported by Harris's account of personhood,18,–,20 nor is it supported by Rady and Verheijde's examination of the complications of DCPS when it is not reversed.16

The loss of consciousness per se is neither permanent nor irreversible; it is the ongoing administration of sedative drugs that results in the patient remaining unconscious. True, when patients never regain consciousness the loss of it turned out, with hindsight, to be permanent5—but the potential for reversibility exists as long as the patient is alive.