While it may seem out of place to discuss the concept of transcendence in a medical textbook, transcendence nevertheless plays a key role in controversies concerning DCS. Not only have physicians been historically slow to accept that spiritual and psychological aspects of end of life impact the physical process of dying, but many even deny that it is the role of physicians to incorporate such thinking and understanding in the care of the dying patient. Little research is available to teach us about the impact of spirituality and religiosity on adult dying patients, and none at all is available regarding the dying child. Yet it is reasonable to assume that, at the very least, what little we do know about adult patients will apply to many older children—and may apply to younger children as well.

What do we mean by transcendence? While there are many different definitions offered, one way to consider transcendence in the dying patient is as the opportunity and potential for the patient to find comfort in understanding their own death in a broader context than simply the physical one. For the dying patient, psychological, spiritual, and religious resolution and comfort may assume much greater importance than physical comfort. Denying patients the opportunity to seek and achieve such an understanding at the end of life may deny them an important path toward relief of their overall suffering. Transcendence, ultimately, is surpassing what we have already become, through our experiences and understanding of those experiences.

Although many physicians and family members worry that knowing that death is imminent may cause patients to despair, lose hope, and even seek to hasten their own deaths, research in adult patients confirms exactly the opposite: that achieving transcendent understanding of their own death can be profoundly comforting to patients.

Kellehear, in a theoretical model of spiritual needs in palliative care, defined a framework for understanding spirituality and religiosity in the dying patient [19]. “Spirituality” refers to a feeling of connectedness to the universe and the search for the meaning of life that may or may not be connected to any religious figure. “Religiosity” is an organized set of beliefs and rituals that are carried out with the goal of connecting to a higher power, such as a god [20, 21]. In Kellehear’s model, spiritual meaning arises from three types of needs: situational, moral, and biographical [19]. Situational needs arise from individual personal and social experiences played out in the context of the individual patient’s illness. Patients seek meaning, purpose, and hope within their own experience of their illness. Moral and biographical needs are met by finding reconciliation of past dilemmas, reunion with others, forgiveness, and closure. The patient may seek moral and social analysis of their life and dying process. Religious needs are met through seeking divine reconciliation and forgiveness, through the experience of religious rites, visitation and literature, and through discussion of eternal life and hope. In this model, research with adult patients to determine the effect of spiritual and/or religious well-being at end of life demonstrates that patients who are informed and aware of the imminence of death generally have significantly higher scores on a spiritual well-being scale than those from whom explicit information is withheld [22]. Patients who are aware of their terminal condition may use remaining time to redirect and re-evaluate their lives, and focus on resolving their spiritual needs. As de Benedetto et al. commented about listening to patients at end of life:

We allow them to transform their chaos stories into quest stories, in which their illnesses become teaching tools for all involved. Quest stories are stories of transcendence [23].

Many doctors are uncomfortable with spiritual and experiential discussions with dying patients, and may justify ignoring or curtailing such conversations as a means of reducing patient suffering—when exactly the opposite may in fact be true. Premature institution of DCS, ostensibly to relieve the “anxiety” that causes patients to seek spiritual comfort may prevent patients from being able to fulfill critical spiritual needs at end of life.

Spiritual experiences are common among dying patients. Renz et al. [24] reported on 251 patients in whom 135 described experiences of peace, freedom, transformed perception or consciousness, experiences of God within and outside of the experience of suffering, and experiences of spirit and energy—a sort of divine light. All patients in the Renz study reported reduced pain, less anxiety, and better body awareness, as well as a different attitude toward illness, life, death, and the divine shortly before they died. Other studies also demonstrate that significant proportions of terminally ill patients experience spiritual and transcendent phenomenon [25], with many, but not all, of these experiences occurring very shortly before death. As one patient stated of their experience, “Simple. Elegant. Beautiful. And I hang on to that with everything I’ve got” [25]. A significant shift toward peace and contentment is one hallmark of these experiences, and they appear to permanently eradicate a patient’s fear, dread, and anxiety as death approaches.

It is understandable that some health care providers question the use of DCS toward end of life, since even minimal studies seem to indicate that these are important, comforting, and transforming experiences that mitigate suffering for both the patient and family, and since many of these experiences happen when the patient is close to death and consideration of DCS might be in play. But are such “transcendent experiences” of real value to patients, particularly to children?

The impact of transcendent experiences on dying children is entirely unstudied, but spirituality is known to play an important positive role in the comfort and well-being of dying children [26, 27]. And while terminal spiritual experiences in younger children are not extensively described, they certainly exist based on reports of near-death experiences in children—one type of terminal spiritual event [28]. DCS in even young children may therefore deprive them of important experiences with regard to meaning in life and spiritual comfort. This may be especially true when DCS is employed to treat “anxiety” rather than to mitigate intractable physical pain, or worse, to relieve the anxiety of others around the child, such as parents, family, and caregivers—for it may then not best serve the child. At the very least, the reasons and goals for employing DCS should be carefully explored, and consideration given to the important experiences DCS may obliterate as well as ameliorate.

Euthanasia is a general term that is derived from Greek roots eu, meaning good or well, and thanatos, meaning death. In modern usage, euthanasia always refers to an act of killing, but one that must meet certain conditions. Not every act of killing is euthanasia, but every act of euthanasia is a killing, for every act of euthanasia ends in death. Furthermore, the term “euthanasia” itself has no intrinsic or independent ethical or legal value: Various acts of euthanasia can be ethical, unethical, legal, or illegal.

Intentions, foresights, and motives are crucial determinants of euthanasia. Euthanasia is above all a deliberate act and requires the explicit intention that the object of the act will be killed. It is neither an accidental side effect nor even a recognized but acceptable risk of an action that is intended primarily to produce results other than death. Thus, administration of pain medication with the explicit intention only of relieving pain, but which causes a possible, but not necessarily wished-for side effect of respiratory depression and death, is not euthanasia. If this was not so, then any physician who attempts to treat a critically ill patient by administering an intravenous antibiotic that unintentionally results in immediate anaphylaxis and death—a known albeit small risk of such action—commits euthanasia. Because personal intentions can be difficult to independently verify, it may be difficult to determine with certainty whether some acts of killing are really euthanasia or merely unintended side effects of other well-intentioned actions.

Intention and foresight are important concepts in both the legal and medical concepts of euthanasia, and they are not synonymous. Intention refers to the specific goals and desired results of an action. Foresight is conceiving of outcomes that we may or may not intend. We might consider the risks of many “secondary outcomes” as significant, without primarily desiring them. In a recent news article, a hunter accidentally killed his hunting partner with a gunshot, while trying to kill the bear that was attacking him. Certainly the hunter may have foreseen a risk, even a significant one, that since both bear and human were in his sights, he might actually shoot the human. But his intention was to kill the bear. Foreseeing a possible outcome does not mean that it is our intention.

Finally, for an act to be euthanasia it must have at its heart a special type of motive. Motive differs from intention in that motive refers to the reasons behind our intentions. Motive is an incitement to action, whereas intention is the intended outcome of the action that is incited. Euthanasia has mercy at the heart of its incitement and altruism as its core virtue. In these ways it shares common roots with DCS, whose intention is also merciful and virtue is altruistic. Harold Shipman, a British physician who administered lethal drugs to patients because he stood to inherit large sums of money from their estates, committed murder and not euthanasia even if many of the deaths he caused were swift and painless and even if as a “side effect” they sometimes ended the life of someone who was suffering and actually wanted to die. That is because his primary motive was based neither in mercy nor altruism, but rather in self-enrichment [29].

The term “euthanasia” does not require nor even imply that the subject is always able to understand, consent to, or request a “good death.” This becomes most obvious when we speak of the euthanasia of nonhuman animals, which always occurs without consent. Euthanasia recipients can include incompetent and never-competent humans, such as infants. Whether it is legal, ethical, or desirable to subject such individuals to euthanasia is a complex topic beyond the scope of this chapter. However, because “mercy” is a core requirement in order for a killing to be considered euthanasia, it follows that in the case of competent persons of any age who are capable of deciding whether euthanasia represents a merciful death for them, consent by the patient is required.

Why do we worry about physicians performing euthanasia? Ancient oaths have emphasized the physician’s role as healer; indeed proscribing practices that, intentionally or otherwise, hasten death. Such prohibitions have rested in the traditional role of physicians as healers and not killers, and the “societal contract” physicians owe to protect lives in return for being pulled into their patients’ privacy and confidences, and for being given unprecedented power in affecting the quality and duration of patients’ lives. Physicians have been prohibited by their oaths since ancient times from participating in the killing of human beings. But the changing physical and moral landscapes of end of life in the last century have led to serious reconsideration of the appropriate role of the physician when death is inevitable. And even in the face of intense debate, PAS and euthanasia is still permitted in only a handful of places in the world. It is important, therefore, to consider whether DCS is, as some suggest, a disguised form of euthanasia.

Proponents of deep conscious sedation (DCS) argue that DCS can be differentiated from euthanasia because DCS is reversible, while death (due to euthanasia) is not.

Death, however, has been a difficult concept for human beings to strictly define. In 1968 when the ad hoc Committee of the Harvard Medical School defined “brain death” [30], they considered whether “death of personhood” was another way of defining death. The Committee defined brain death as irreversible cessation of the function of the whole brain. Lesser, but still permanent brain dysfunctions were also considered, such as permanent coma, in which various degrees of dysfunction of the cortex were present, but brainstem function remained essentially intact. Proponents of a “personhood” definition of death argued that once a human being reached some threshold level of cognitive dysfunction, their inability to participate in a social context in their lives essentially rendered them “dead,” and that therefore certain comatose patients could be declared dead [31]. Some authors have discussed the ethics of using such comatose patients for unconsented vital organ donation, for example [32].

In whatever way death is defined, however, one common requirement is that death is a permanent state of affairs. Even in patients whose hearts have stopped and then been restored to beating, we do not say medically that they were biologically dead. We say we have “resuscitated” them, not “resurrected” them. To be sure, death hovered close by—prolonged cardiac arrest would have progressed quickly from “resuscitatible” to “nonresuscitatible” and therefore permanent. Loss of brain function would have progressed from “reversible” to “irreversible.” The attainment of a permanent loss of these functions is a key element to declaring death.

Because DCS can be reversed (i.e., the medications can be stopped and the person presumably restored to higher levels of awareness), it is argued by many physicians that it cannot be considered “death,” and therefore instituting it is not a form of “euthanasia” [33]. Anesthesiologists regularly produce a state of profound unconsciousness in their patients, for example, but no one equates that state with death, nor the practitioner of anesthesia with having committed an act of killing. However, others point out that the intention and practice of DCS produces permanent loss of consciousness, and therefore permanent loss of “personhood.” If death can be defined as an intended permanent loss of social participation and awareness, then DCS certainly produces a type of death [34].

Defining the nature of such a “social death” proved elusive for the ad hoc committee, due to the spectrum of cognitive dysfunction that could be considered “dead” under such a definition, together with the potential temporary nature of loss of personhood. There were concerns that a “slippery slope” may then allow physicians and families to kill vulnerable persons who have been disabled by varying levels of cognitive dysfunction. Furthermore, subsequent research indicated that many human beings considered to be permanently “comatose” and therefore having “lost personhood,” in fact have high levels of awareness and are merely prevented from demonstrating awareness and interacting with others due to other disabilities imposed on them by their brain injuries [35]. For these and other reasons, loss of personhood has never been accepted legally or ethically as a definition of death in the United States, and ethical arguments that DCS constitutes euthanasia are somewhat weak.