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Abstract

Palliative sedation refers to the reduction of consciousness in patients who suffer from refractory symptoms at the end of life. In this entry, the most radical form of palliative sedation, namely, deep and continuous sedation until death, is at the focus of attention. It is one of the most contested medical decisions at the end of life and is generally considered to be a means of last resort, to be justiﬁed only when conventional interventions are no longer effective. After the concept of palliative sedation has been introduced, some empirical ﬁndings have been described, and a global perspective has been shortly introduced; three main areas of ethical debate are sketched out and analyzed: (1) the moral status of palliative sedation and differences and similarities between palliative sedation and physician-assisted death, (2) the decision to withhold or withdraw artiﬁcial nutrition and hydration in deeply sedated patients, and (3) the assessment of refractory symptoms and the expertise in palliative care that is required from the physician. It is concluded that, although guidelines show important similarities regarding these three domains, there are important differences of opinion among experts in the ﬁeld. The debate on palliative sedation will remain of topical interest in the ﬁeld of medical ethics and palliative care.

Introduction

Palliative sedation is one of the most contested medical decisions at the end of life. It refers to the reduction of the consciousness of a patient who is at the end of life, and it is indicated only if the patient, in spite of adequate palliative care, is suffering from symptoms that cannot be relieved without the lowering of consciousness. The practice can range from only a mild reduction of consciousness to the induction of deep sleep. In the former case, the patient will still be able to communicate with loved ones and caregivers, while in the latter case, consciousness is taken away. It can be administered intermittently or continuously. In the former case, the patient is awake during episodes, for instance, during the day, while in the latter case, the patient is not expected to wake up anymore. Mild and intermittent sedation certainly involves ethical aspects that need to be addressed, but the international debate has focused on one speciﬁc type of palliative sedation, namely, continuous deep sedation until the end of life. In this form of sedation, the patient is in deep sleep, not expected to wake up anymore, and expected to pass away on short term. It is this form of palliative sedation that is at the focus of this entry.

In the next section, the concept of palliative sedation will be further clariﬁed. It will be indicated that in the ethical debate on the moral status of palliative sedation, many different deﬁnitions have been proposed, and authors attach many different meanings to the concept. The following section addresses some empirical data regarding the use of palliative sedation in different countries in order to gain insight in current practice. Issues such as the prevalence of palliative sedation, its indications, and the aims of physicians will be addressed. Little is known about palliative sedation in countries outside the North Americas, Europe, and Australia (with Japan as exception). Yet, in a separate section, a global perspective on palliative care, pain relief, and palliative sedation is shortly introduced. The main section addresses the international ethical debate on palliative sedation. Under three headings, the most important ethical aspects of palliative sedation will be addressed. Views that are presented in important guidelines on palliative sedation will be contrasted to different views from the literature. Thus, it becomes clear that guidelines, although reﬂecting the majority view, presuppose a speciﬁc concept of palliative sedation that is not shared by everyone. First, the moral status of palliative sedation will be analyzed, and argumentation strategies to distinguish palliative sedation from physician-assisted death will be compared to strategies pleading for a moral indifference of palliative sedation and physician-assisted death. Second, the decision to withhold or withdraw artiﬁcial nutrition and hydration in deeply sedated patients will be analyzed. Whereas guidelines hold that this is a decision that should be separated from the decision to start palliative sedation, arguments against it may also have convincing force. And third, ethical aspects regarding the assessment of refractory symptoms will be addressed and related to the question whether expert consultation is a prerequisite before resorting to palliative sedation. It will be concluded that, although there is agreement between international guidelines on the moral status of palliative sedation, various authors in the ﬁeld hold different opinions. The ethical debate on the moral legitimacy of palliative sedation is, in this respect, topical and expected to continue.

The Concept Of Palliative Sedation

The term “palliative sedation” can be seen as an alternative to the term “terminal sedation” which was coined in the early 1990s by Enck. Authors argued that the adjective “terminal” might be associated with termination and with the physician’s intention to shorten the patient’s life by administering high doses of sedatives. Instead, the adjective “palliative” indicated that the physician’s aim is (and, according to most, should be) to relieve symptoms that could not be relieved by using conventional measures. The use of the “new” term palliative sedation is now increasing in landmark publications and guidelines.

Deﬁnitions of palliative sedation vary widely. Deﬁnitions may or may not include the physician’s intention, the depth of the sedation, the aim of sedation, the prognosis of the patient, and the proper indications of sedation. Depending on the deﬁnition that is used, practices of sedation may be included or excluded, potentially leading to major differences in empirical data. An example of a narrow deﬁnition that includes many of these aspects was introduced by Chater et al. in 1998. Terminal sedation was deﬁned as: “The intention of deliberately inducing and maintaining deep sleep, but not deliberately causing death, for the relief of (1) one or more intractable symptoms when all other possible interventions have failed, or (2) profound anguish that is not amenable to spiritual, psychological, or other interventions, and the patient is perceived to be close to death” (cf. Claessens et al. 2008, p. 322). An example of a broad deﬁnition was introduced by Morita in 2002. Palliative sedation was deﬁned as “The use of sedative medication to relieve intolerable and refractory distress by the reduction of patient consciousness” (cf. Claessens et al. 2008, p. 316). Contrary to the former deﬁnition, this deﬁnition does not speak of the depth of the sedation, the prognosis of the patient, and what symptoms might be proper indications. It does not explicitly exclude “causing death,” and instead of aiming at deep sleep, it speaks of relieving intolerable and refractory distress to which reduction of consciousness is a means. Finally, the guideline on palliative sedation from the European Association for Palliative Care (EAPC) speaks of: “The monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and health-care providers” (Cherny and Radbruch 2009, p. 581). What is noteworthy here is that the deﬁnition includes ethical acceptability, while the guideline later on addresses practices of “injudicious use of palliative sedation.” The question whether injudicious use of palliative sedation is ethically unacceptable and thus not part of the deﬁnition remains open. Apart from the many definitions of palliative sedation, another unclarity relates to what caregivers in practice label as palliative sedation. Thus, the use of opioids with potentially sedative side effects is sometimes labeled as palliative sedation as well as the use of sedatives with the explicit intention to shorten the patient’s life. In summary, palliative sedation is an umbrella notion that can have many different meanings. Dependent on the deﬁnition that is used, practices can be labeled as “palliative sedation” or not. This has important consequences for the representativeness of empirical data on palliative sedation.

Empirical Data On Palliative Sedation

Figures indicating the prevalence of palliative sedation are highly dependent on the deﬁnitions used. This may partly explain the high differences in prevalence between different countries. Prevalence ﬁgures of continuous deep sedation until death show a range from 2.5 % (Denmark) to 16.5 % of all deaths (UK). Apart from deﬁnitions, these differences may also be explained by the health-care system. In countries where palliative care is less well developed, ﬁgures may be higher than in countries with specialist palliative care available for all. Caution is required here since the high ﬁgure of palliative sedation cases in the UK, with a well-developed specialist palliative care system, strikes as odd. In countries where patients at the end of life die at home and are cared for by their general practitioner, ﬁgures may also be higher, since GP’s in general are less well trained in specialist palliative care (cf. Ten Have and Welie 2014).

The far-reaching practice of rendering a patient unconscious is considered only justiﬁable in cases where the patient is suffering unbearably from refractory symptoms. Most empirical studies mention delirium, dyspnea, pain, fatigue, and agitation as symptoms that were present before palliative sedation was initiated. A minority of the studies mention psychosocial and existential symptoms such as anxiety and anguish (cf. Claessens et al. 2008). In the vast majority of cases, more than one of these symptoms were present, and when psychosocial or existential suffering was mentioned, this went almost always together with mention of other physical symptoms. Evidence from Spain suggests that, in countries where patients are typically not informed of their diagnosis and prognosis, psychosocial and existential suffering may be more often seen as a refractory symptom. The patient is unknowing of his/her prognosis, and unconsciousness is seen as the “best way out” (cf. Materstvedt and Bosshard 2009). But the patient may also realize or suspect that he/she has come at the end of life and feel anxious and unable to communicate this anxiety. For these patients, unconsciousness may sometimes be considered the lesser evil.

Typically, but not exclusively, palliative sedation occurs in cancer patients with a very short expected prognosis of days only. Next to cancer, patients suffering from cardiovascular diseases, pulmonary diseases, and neurological diseases may also require palliative sedation. And in a small minority of cases, patients live longer than expected and may remain in deep sleep for 2 weeks or more. In most cases of palliative sedation, artiﬁcial nutrition and hydration are withheld although it is suggested that, especially in countries with a strong Catholic tradition, artiﬁcial nutrition and hydration are continued (or even started). Another reason for continuing these measures may be the relatively long prognosis of the patient (Miccinesi et al. 2006).

Palliative Sedation In South America, Africa, And Asia

In many countries outside Europe, the North Americas, and Australia, implementation of palliative care is hampered by a variety of factors (with Japan and South Africa as exceptions). Availability, affordability, and accessibility of services are limited. Governments and health-care systems do not always facilitate palliative care implementation. Education in palliative care, for instance, in the nursing and medical curricula, is often inadequate, leading to insufﬁcient expertise and a lack of trained researchers. Instead of full multidisciplinary palliative care, it is often not more than “partial” palliative care that can be provided.

An important problem in the care for the incurably ill in many developing countries relates to the availability of opioids. Estimates from Latin America indicate that less than 1 % of the terminally ill needing opioids actually receive it (Wenk and Bertolino 2007). Estimates from India show even lower percentages (Rajgopal and Joranson 2007). Restrictive government regulations and prejudices among medical staff (e.g., relating to addictive effects, life-shortening effects, and respiratory suppression), together with a lack of ﬁnancial resources, make pain relief for a substantial part of the incurably ill suboptimal. Interestingly, evidence from India suggests that prejudices among those caregivers who did receive education in specialist palliative care are virtually nonexistent (Gielen et al. 2011). Specialist Indian nurses and physicians indicate that if opioids are titrated well, there are no life-shortening effects to be expected at all. As long as dosages are administered proportionately, they see no limit in the use of morphine. The only criterion they use is the patient’s pain while possible addictive side effects are accepted. One of the African countries where palliative care is developing rapidly is Uganda. With government support as well as support from palliative care organizations, the goal is to implement palliative care throughout the country. Permissive laws regarding opioid use enable caregivers to make morphine affordable and available to all who are in need (Jaqwe and Merriman 2007).

Regarding the prevailing views on palliative sedation in these countries, there is a dearth of information, and more empirical ethical research is necessary. The interview study from Gielen mentioned above indicates that the (specialist) Indian nurses and physicians did not oppose light sedation even though the majority expressed concerns regarding deep continuous sedation. Concerns were related to unacceptable side effects and the fact that daily activities could no longer be carried out and that social contacts and communication would become impossible. Some pointed out that deep sedation would not be necessary in the presence of specialist palliative care. Those who did not exclude deep continuous sedation stressed careful assessment of the patient’s needs and prognosis (Gielen et al. 2011). The results of this study cannot easily be extrapolated to other caregivers since the interviewees all received specialist training and are thus part of a small minority. Decision-making processes in many developing countries may substantially differ from North American, European, and Australian perspectives. Especially the role of the family is important in this respect. Many patients are not informed of the diagnosis, and, instead, a family member decides for the patient. In cases of poverty, decisions are complex from a ﬁnancial point of view, and choices will have to be made by the patient and family between provision of adequate palliative care for the patient, the marriage of a child, or his/her education (Chaturvedi 2008).

Ethical Controversies Regarding Palliative Sedation

In this section, three main ethical controversies regarding palliative sedation will be presented and analyzed. First, the debate on the moral status of palliative sedation as opposed to physician assisted death will be sketched out. Second, the ethical question of whether palliative sedation should also include a decision to withhold or withdraw artiﬁcial hydration and nutrition will be addressed. Finally, the ethical controversies regarding what constitutes “refractory symptoms” will be described and analyzed.

Palliative Sedation And Physician-Assisted Death

Whereas palliative sedation and physician assisted death (PAD) both are seen as means of last resort, to be justiﬁed only if the best available palliative care has failed to provide adequate symptom relief, national and international guidelines strictly distinguish between these practices. In fact, one of the main aims of the guideline of the Royal Dutch Medical Association is to distinguish palliative sedation as sharply as possible from PAD (RDMA 2009). Thus, the guideline contrasts palliative sedation with PAD indicating the following (non-exhaustive) distinctions: Whereas palliative sedation is normal medical treatment, PAD is not. Whereas palliative sedation is a decision between the doctor, patient, and relatives, PAD requires independent consultancy and notiﬁcation of a review committee. Whereas the aim of palliative sedation is symptom relief, the aim of PAD is to put an end to suffering. Whereas the means to that aim is the lowering of consciousness in palliative sedation, the means in case of PAD is life termination. And whereas palliative sedation is reversible in principle, PAD is not. International guidelines, such as the abovementioned EAPC guideline but also the American Medical Association’s Code of Medical Ethics, hold that palliative sedation is an acceptable part of palliative care and should be considered fundamentally different from PAD. But since PAD in most countries is illegal, the distinctions between PAD and palliative sedation receive less attention than in the Dutch guideline.

This brings us to the question whether palliative sedation can be conceived of as an alternative for PAD. According to many ethicists and palliative care physicians, this seems to be the case as they argue that PAD is not necessary to legalize if palliative sedation is accepted as a rarely needed option in palliative care. Excellent palliative care, together with palliative sedation in exceptional circumstances, makes the legalization of PAD superﬂuous, according to these authors. The presupposition in this line of argumentation is that palliative sedation is morally preferable to PAD (cf. Raus et al. 2011). In this respect, it should be acknowledged that, in countries where PAD is legal, cases can be conceived of in which patients at the end of life who are suffering unbearably can be offered a choice between palliative sedation and PAD. Some will opt for sedation, for instance, because they do not want to be killed by the physician with whom they have a relation of conﬁdence. Others may opt for PAD, for instance, because this will last shorter and will be less burdensome for the loved ones. In these cases, palliative sedation may be seen as an alternative to PAD. Yet, in the majority of cases, patient characteristics may make them either eligible for palliative sedation or for PAD but not for both. Patients with a long life expectancy may not be eligible for palliative sedation, and patients whose source of suffering is mainly psychological or existential may be eligible for PAD but not for palliative sedation (see below). Patients who are already subcomatose or delirious may not be eligible for PAD, since their competency is diminished, but may be deeply sedated if the physician and the legal representative agree. In short, although in some cases palliative sedation may be an alternative to PAD (in cases where patients have a short prognosis and are competent to decide), in most cases, patients do not really have a choice (because their prognosis is too long for palliative sedation or their competency too diminished for PAD).

Despite the consensus on the moral acceptability of palliative sedation in speciﬁc cases, the debate on the moral status of palliative sedation is continuing, and several authors have questioned whether palliative sedation and PAD are as different as guidelines seem to suggest. From a consequentialist point of view, it is argued that intentions are by no means decisive for the morality of an act. Instead, morality relates to the balance between harms and beneﬁts. In this line of reasoning, the act is morally right if it leads to less harm or more beneﬁt than was the case before the act was performed. Thus, irrespective of whether the effects of an act were intended or merely foreseen, the morality of an act is judged according to its consequences. The responsibility of the actor equally relates to intended consequences and non-intended but foreseen consequences. If this line of reasoning is applied to palliative sedation, differences between palliative sedation and PAD become blurred. After all, the consequence of palliative sedation is that the patient is put in deep sleep and not expected to wake up anymore. In other words, one can say that the patient is in a state of social and psychological death since consciousness is taken away. The consequence of PAD is that the patient dies within minutes. In both cases, the experience of suffering is taken away. The only differences between the options are that palliative sedation takes longer and that the patient under sedation is still biologically alive. This is why palliative sedation is sometimes considered to be equivalent to euthanasia with other means and in a slower manner; palliative sedation is “slow euthanasia” (Billings and Block 1996). At least from the perspective of the patient, it might make little difference whether she is biologically alive but unconscious or whether his/her life is terminated by a physician.

Also, other argumentation strategies than the strictly consequentialistic strategy can be used in order to minimize distinctions between palliative sedation and PAD (Janssens et al. 2012). At least some argumentations used against PAD seem also applicable to palliative sedation. For instance, one of the main arguments against PAD relates to the slippery slope. It means that once the door is opened for PAD under strict circumstances, these circumstances will be widened, and cases will occur that we would not want to allow. PAD will become a simple solution to complex problems, and as such, it will make the further development of palliative care needless. But similarly, this argument can be used against palliative sedation as well. Why could palliative sedation not also be seen as a simple, one-size-ﬁts-all solution for complex problems regarding pain and symptom management? And do the criteria proposed in guidelines (such as refractory symptoms, short prognosis) not also run the danger of being widened time after time? Empirical evidence suggests that the prevalence of palliative sedation is increasing in several West European countries (e.g., Rietjens et al. 2008), while there is no evidence that the quality of palliative care services is decreasing. Another argument that may blur the distinctions supported by the guidelines relates to the concept of personhood. If the capacity to think is part of one’s deﬁnition of person (as, e.g., the seventeenth-century philosopher John Locke held), it would imply that not only PAD but also palliative sedation would terminate the person’s life. Palliative sedation then should also be conceived as life termination (with or even without the request of the patient). It not only makes “thinking” impossible but takes away all preconditions for “experience.” Finally, empirical evidence suggests that physicians carry out acts with more than only one intention. In a substantial proportion of cases of palliative sedation, one of the physician’s intentions is to shorten the life of the patient (next to symptom relief). Intention in those cases may be a concept ill-equipped to distinguish palliative sedation from PAD. The concept of intention that is presupposed in the guidelines may be a simpliﬁed, “sanitized” concept which has little relevance for practice where different intentions go hand in hand.

As was shown above, the consensus within the expert community that palliative sedation and PAD are fundamentally different is contested. Yet, also for this majority, opinion-convincing arguments can be found. The view that it is at least at ﬁrst sight (prima facie) simply wrong to take another person’s life, independent of the consequences, is solidly rooted in the morality of any civil society. Life has value, not only instrumental but also in itself. And also the patient under sedation is still “one of us,” endowed with legal rights and dignity. This conviction only makes life termination and palliative sedation different. Furthermore, arguments favoring the relevance of intention for the morality of an act are convincing. We would all consider the oncologist who likes to make people nauseated and bald as a consequence of his therapy a bad and horrifying caregiver. And if in retrospect it appears that the bad effects of an act came out but the good effects not, we would regret the act, exactly because one’s intention had not come out. In other words, one does not want to bring about foreseeable harms, but one accepts them because a proportionately grave reason (e.g., the reduction of suffering) is present. Thus, it seems unconvincing to argue that the foreseeable negative effects of an act cannot be unintended. A more practical objection to the role of intentions is that the intention of a physician can never be assessed by a third party. Physicians who sedate a patient may have the intention of shortening his life (and as was noted above, empirical evidence indicates that in a minority of cases, physicians do have this intention, exclusively or among other intentions). This is where the principle of proportionality comes into focus. In retrospect, the act itself may give clues of the intention of the physician. Was the dosage proportionate to the desired effect? Did the physician assess whether symptom control had been achieved before increasing the dosage? Or was the dosage increased every hour without assessing the patient’s condition? If dosages in retrospect appear to be disproportionate to the goal of symptom relief, then this reveals something of the intention of the physician. At least one of her intentions appears to be life shortening. If, as is argued in the guidelines, intentions matter morally and if it is at least at ﬁrst sight wrong to take another person’s life, there seems to be a sound basis to evaluate palliative sedation differently from PAD. Still, relating to this point, another difﬁcult issue should be raised in this context

Palliative Sedation And The Withdrawal Or Withholding Of Artificial Hydration (And Nutrition)

The moral status of artiﬁcial hydration and nutrition merits an ethical analysis of its own. Ethicists, especially those from Christian, Muslim, or Jewish background, argue that the provision of food and ﬂuids is part of good care that can never become futile. In the end of the 1980s however, especially in the context of patients who had been in persistent vegetative state for many years, courts ruled that artiﬁcial hydration and nutrition should be seen as forms of medical treatment that can in exceptional circumstances become futile. Court rulings showed consistency, e.g., in the cases of Tony Bland in the UK, Terri Schiavo in the USA, and Ineke Stinissen in the Netherlands. Artiﬁcial nutrition and hydration were discontinued in these cases, after permission from the courts, and the patients died as a result. Although the ethical view that food and ﬂuid provision is part of good care may have convincing force, the presupposition in this entry is that artiﬁcial nutrition and hydration are medical treatments that can become futile, just like all medical treatments under circumstances can be withheld or withdrawn.

Most patients who receive palliative sedation have a life expectancy of days only. Many will have stopped eating and drinking themselves while still conscious. For these patients, the decision to start artiﬁcial hydration after they have been sedated would simply be malpractice. There is a risk that hydration will cause more harm than good since edema or dyspnea may occur as a consequence of the administration of ﬂuids. Yet, patients may also suffer from refractory symptoms when they still have a reasonable life expectancy or when the life expectancy is difﬁcult to estimate. In these cases, the decision to withhold artiﬁcial hydration may well have an impact on the patient’s life expectancy (since withholding of nutrition is less likely to lead to a quicker death, nutrition is not at the focus here). This is why the Dutch guideline speciﬁcally states that the prognosis of the patient may not be longer than 2 weeks (RDMA 2009). The EAPC guideline speaks of patients who are in the very terminal stages of their illness with a prognosis of hours or days at most (Cherny and Radbruch 2009). Both guidelines explicitly state that the decision to withhold/withdraw hydration should be made separately from the decision to start palliative sedation. While the EAPC guideline acknowledges a heterogeneity of attitudes toward the decision to withhold hydration, the RDMA guideline speaks in this context of futile medical treatment and of a medical decision, made by the physician, that should be well accounted for. In cases where the patient is still able to take ﬂuids, intermittent sedation can be proposed, not continuous and deep sedation. In this respect, the Dutch guideline goes a step further, compared to the EAPC guideline. The idea is that artiﬁcial hydration does not contribute to the quality of life of the patient in deep sleep. It is questionable whether the concept of quality of life applies to the unconscious patient at all.

Still, one of the main reasons to limit the patient’s prognosis to a maximum of 2 weeks is that if hydration is discontinued, the patient may well die as a consequence of dehydration. And in these cases, palliative sedation may become similar to PAD. Since the aim of many guidelines is to distinguish palliative sedation as sharply as possible from PAD, these situations are considered undesirable. From an ethical point of view however, one can question whether this position is tenable. After all, many medical decisions to refrain from medical treatment may have a life shortening impact. Abstaining from chemotherapy, dialysis, or antibiotics may well have life shortening effects, while these are relatively unproblematic decisions in certain situations that in no way seem similar to PAD. It is even widely acknowledged that pain medication with life-shortening effects can be morally defensible as long as the aim is to reduce pain. So why would the decision to refrain from artiﬁcial hydration make palliative sedation similar to PAD in cases where the prognosis is more than 2 weeks? Is foregoing medical treatment, even if life shortening effects are taken into account, not fundamentally different from active life termination? If dehydration is accepted in the abovementioned cases of patients in persistent vegetative state (who all died as a result of the decision to withdraw artiﬁcial hydration), why would it not be acceptable in patients who are deeply sedated and may die earlier as a result? It can be argued that if patients suffer from refractory symptoms that cannot be relieved by the best available palliative care, palliative sedation may be indicated, irrespective of the prognosis. And since artiﬁcial hydration can be considered futile in a patient in an unconscious state, not expected to wake up anymore, this could still be seen as a form of normal medical treatment, even if life-shortening effects should be taken into account. If that is so, one might even argue that the decision not to artiﬁcially hydrate the patient is part of the decision to start palliative sedation, thus criticizing the consensus that dehydration is a separate decision. Dehydration and palliative sedation, in this line of reasoning, come in one pack.

Concludingly, among the medical community, there is consensus that withdrawal or withholding of artiﬁcial hydration is an acceptable option for patients receiving palliative sedation. At the same time, argumentation strategies may differ, and, furthermore, it should be acknowledged that especially in Christian, Muslim, or Jewish countries, dehydration maybe considered inhuman per se.

Refractory Symptoms And Expert Consultation

Palliative sedation can only be started if refractory symptoms are present. Generally, refractoriness means that conventional means of diminishing suffering (1) are no longer available or (2) require too much time to become effective or (3) have intolerable side effects. The assessment of refractory symptoms therefore requires medical expertise since the physician should have expert knowledge of the available pain and symptom medications, should be able to exclude reversible causes of suffering, should know how long it takes for a means to become effective, and should be able to predict the expected side effects. However, the assessment cannot do without the voice of the patient. What may be unbearable for one patient may not be so for another. What is an intolerable side effect for one patient may not be so for another. In other words, the assessment of refractory symptoms is an interactive process provided that the patient is still able to communicate. Thus, although there is general agreement that refractory symptoms are a prerequisite for palliative sedation, what constitutes refractoriness is open for debate.

Empirical evidence indicates that the prevalence of palliative sedation differs substantially, not only per country but also per setting. This may be partly explained by terminological and conceptual unclarities as was indicated above or by the type of patients that are seen in a speciﬁc setting. However, another explanation must be mentioned here. Assessment of refractory symptoms requires from the physician expertise in palliative care. This is why the EAPC guideline speaks of injudicious use of palliative sedation in cases where before resorting to palliative sedation there was failure to engage with clinicians who are expert in pain and symptom relief despite their availability (Cherny and Radbruch 2009). This contrasts interestingly with the Dutch guideline where it is held that since palliative sedation is normal medical treatment, consultation is not mandatory. Only in cases where physicians have doubts regarding their expertise, the professional norm prescribes expert consultation, according to the Dutch guideline. Furthermore, in exceptional cases where the patient is suffering from refractory symptoms but the life expectancy is difﬁcult to estimate, consultation of an expert physician is considered a requirement (RDMA 2009).

In this respect, it is noteworthy that authors have pointed to the “generalization of palliative sedation,” meaning that not only experts in palliative care resort to palliative sedation but also specialists outside palliative care such as general practitioners are more and more using this option (Ten Have and Welie 2014). The fact that the prevalence of palliative sedation is increasing in many countries would provide support for this explanation. What is at stake here is the widely held assumption that palliative sedation is a means of last resort, to be started only when the best available palliative care is unsuccessful in relieving symptoms. Patients who are sedated without resort to the best available palliative care seem to have been treated disproportionately. Considering the far-reaching effect of palliative sedation, namely, taking away consciousness, this seems to be problematic from an ethical point of view. Expert consultation in cases where the treating physician is not or insufﬁciently trained in palliative care seems to be a moral requirement. It is noteworthy in this respect that only in a small minority of cases in the Netherlands is expert consultation sought. And whereas all guidelines hold palliative sedation to be normal medical treatment, to be decided upon by the physician and patient (or representative) together, normal medical treatment and obligatory expert consultation are by no means by deﬁnition mutually exclusive.

Palliative care has always been seen as “total care” acknowledging the intrinsic connectedness of physical, psychological, social, and existential suffering. In some cases, the physical symptoms may be well controlled while the patient is suffering unbearably on psychological or existential grounds. It is well known from empirical studies that fear for future suffering, for increasing dependence, for the possibility to suffocate, etc., is a main reason for many patients to request PAD. It is also widely acknowledged that these forms of existential suffering (fear, anxiety, hopelessness) may be considered unbearable and hopeless. The question now is whether these forms of suffering may also be considered as refractory symptoms, making patients eligible for palliative sedation. There seem to be good reasons to treat these cases differently from cases where physical symptoms are at the foreground. First, physicians may lack expertise in treating psychological and existential symptoms, and multidisciplinary care, at least including a psychologist who has built up a relation with the patient, seems required. Second, the presence of existential suffering does not say much about the life expectancy of the patient. It seems malpractice to deeply sedate a patient with a long life expectancy for psychological discomfort. Third, the severity of such symptoms may vary in time, and it is immensely difﬁcult to make sure that the symptoms are hopeless and conventional interventions ineffective. Again, expert psychologists, chaplains, or social workers are necessary in the care for these patients. There is no consensus at the moment on the right answer to this question. At the least, it is acknowledged that physicians must be more hesitant in resorting to palliative sedation in these cases, and multidisciplinary care is required. Before resorting to deep sedation, light and intermittent sedation should have been tried. Furthermore, the life expectancy of the patient must be short, and, ﬁnally, cases where physical symptoms are under control and where the presence of psychological, social, or existential symptoms only constitutes unbearable suffering may be considered improper indications for deep continuous sedation until death by a majority of caregivers. Paradoxically, in countries where PAD is legal, these patients may be considered eligible for PAD but not for palliative sedation.

Concludingly, the presence of refractory symptoms is pre-conditional for palliative sedation. In order to assess refractoriness, expertise in palliative care is required, for instance, to exclude reversible causes of symptoms. There is however no consensus on the question of whether expert consultation is required in the assessment of refractory symptoms before resorting to palliative sedation. And whether also psychological, social, or existential symptoms may be considered as an indication for palliative sedation is still under debate.

Conclusion

Palliative sedation in its most radical form takes a patient’s consciousness away. The patient is not expected to wake up anymore and dies in deep sleep. This makes palliative sedation one of the most contested medical decisions at the end of life. According to inﬂuential guidelines, it is a morally defensible option in palliative care in cases where symptoms have become refractory in spite of the best available palliative care. However, the ethical debates on the moral status of palliative sedation and the differences and similarities between palliative sedation and physician assisted death (PAD) will be of continuous actuality. While guidelines argue that palliative sedation should be sharply distinguished from PAD, several authors are of the opinion that, at least from the patient’s perspective, palliative sedation is indifferent from PAD. Guidelines hold that the decision to withhold or withdraw artiﬁcial hydration and nutrition in a deeply sedated patient is a separate decision. Yet, authors who presuppose that artiﬁcial nutrition and hydration are medical decisions may argue that in a deeply sedated patient, artiﬁcial nutrition and hydration are futile measures since, from a medical point of view, they may be harmful, while from the perspective of the patient, they do not contribute at all to quality of life. The question regarding the assessment of refractoriness of symptoms is another contested issue in the debates on palliative sedation. Although expertise in palliative care is required, there is no consensus on the moral or legal duty to consult experts in palliative care before resorting to palliative sedation. And differences of opinion exist among the medical community on the question whether symptoms of psychological, social, or existential origin can be considered proper indications for palliative sedation.

Many more topics will remain of interest in the debates on palliative sedation, and in this entry, only some important topics have been addressed. Topics that were only hinted at above but merit more attention include the concept of person and what effects palliative sedation has on this concept, the principle of proportionality and indicated dosages of sedatives, and, ﬁnally, the principle of patient autonomy and rights of legal representatives if the patient is considered incompetent.

Philosophers, ethicists, lawyers, physicians, nurses, and other caregivers should uphold dialogue in respect for one another’s views so that guidelines in the future can be amended if considered necessary and that care for patients at the end of life is improved. Palliative sedation can be part of good palliative care, albeit in exceptional circumstances only and if criteria are continuously evaluated by all those involved.

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