ABSTRACT: Sedation is a clinically important therapeutic intervention in the imminently dying patient. As the patient with an advanced, irreversible illness nears the end of life, symptoms accumulate that are progressively more difficult to manage and that may become refractory to standard medical interventions. The most common of these intractable symptoms are pain, agitated delirium, dyspnea, and existential or psychological distress. Various therapeutic options available for relieving these symptoms include physician-assisted suicide, euthanasia, acceptance of unrelieved suffering, and terminal sedation. Some commentators have voiced concerns that sedating the imminently dying patient inevitably hastens death, and that this practice, in fact, is a surrogate form of physician-assisted suicide or euthanasia. Ethical arguments invoked to support the use of terminal sedation include the principle of double effect, which draws a moral distinction between the intention of an act (in this case, to relieve suffering) and its foreseen but unintended consequence (premature death). This author views sedation as a necessary, although risk-laden, procedure that, if practiced by trained, dedicated clinicians, maintains the physician’s twin obligations to benefit patients and to “do no harm.” [ONCOLOGY 14(4);585-592, 2000]
To die: to sleep—no more; and by a sleep to say we end the heartache and the thousand natural shocks that flesh is heir to. ’Tis a consummation devoutly to be wish’d. To die, to sleep—to sleep:—perchance to dream. Ay, there’s the rub. For in that sleep of death what dreams may come, when we have shuffled off this mortal coil.
—William Shakespeare (Hamlet)
With every right comes an obligation. The patient’s right to relief from suffering generates the doctor’s obligation to attempt to relieve that suffering, through medical therapies or other interventions. This obligation, however, is tempered by the potential morbidity and mortality posed by those therapies.
Restated in philosophical terms, the physician must maintain a precarious balance between the principles of beneficence and nonmaleficence. The principle of beneficence holds that physicians, because of their medical knowledge, have a “prima facie obligation” to benefit patients. Nonmaleficence, on the other hand, prohibits physicians from using their profession to cause patients harm.
The issue of balancing the benefits vs burdens of medical treatment becomes most poignant at the end of life. For example, instituting treatments at the end of life that may hasten death may not be morally justifiable even when one is guided by the principle of beneficence. The ethical analysis is strongly influenced by a medical risk-benefit assessment.
Palliative care cannot relieve all pain and suffering in all patients. Although the literature on the success of palliative interventions at the end of life is sparse, a number of studies[2,3] have documented that the incidence of symptoms at the end of life is not insubstantial. During this phase of palliation, repeated medical interventions may offer relief and hope, even if transient. Such interventions can make the end of life more bearable to the patient, family members, and physician.
In a significant percentage of patients with incurable end-stage disease, however, symptoms and suffering become intractable and intolerable as death approaches, despite the use of standard palliative therapies. The goals of care must change according to the physiologic circumstances, which, in terminally ill cancer patients, can shift rapidly and dramatically. Several therapeutic approaches proffer themselves in this situation. These include physician-assisted suicide, euthanasia, acceptance of unrelieved suffering, and terminal sedation.
Many illnesses besides cancer, such as advanced rheumatoid arthritis, evoke intolerable symptoms that are refractory to standard therapies and cause a great deal of suffering. Within the context of standard medical practice, however, sedation is not considered to be an appropriate treatment for such symptoms. Thus, it is the superimposition of imminent death on refractory suffering that raises the possibility of reducing the patient’s level of consciousness as a means to alleviate suffering.
Some authors view the use of sedation to control symptoms at the end of life as part of normative medical practice in extraordinary clinical circumstances. However, for other commentators, this practice poses difficult ethical and moral dilemmas. This article will explore both of these viewpoints. As a framework for this discussion, the article will first define terminal sedation and related terms; review the incidence of refractory symptoms in terminally ill cancer patients; and describe the drugs used to induce terminal sedation.
Terminal sedation is a recent addition to the lexicon of palliative care. Based on a survey of 61 selected palliative care experts, Chater et al arrived at the following definition: ‘‘Terminal sedation is...the intention of deliberately inducing and maintaining deep sleep but not deliberately causing death in very specific circumstances.’’ The ‘‘specific circumstances’’ were defined as intractable symptoms at the end of life, including ‘‘profound anguish,’’ for which standard palliative care interventions had failed to provide adequate relief. The definition excluded “planned temporary sedation that is reversed.”
Of the experts surveyed by Chater et al, 40% agreed unequivocally with the proposed definition while 4% disagreed completely. Nonetheless, 89% agreed that terminal sedation is sometimes necessary, and 77% stated that they had used it during the previous 12 months.
Stone et al avoided the phrase “terminal sedation” in their study. Instead, they defined sedation as ‘‘the prescription of sedative drugs where reducing the level of consciousness was part of the treatment strategy with the aim of relieving stress.’’
In discussing the results of their survey, Chater et al actually criticized the term ‘‘terminal sedation’’ as being grammatically ambiguous. Such a phrase could be interpreted as meaning either sedation intended for terminally ill patients or sedation for the purpose of terminating the patient’s life. In addition, a significant percentage of survey respondents said that they used medication as ‘‘a tool to manage symptoms,’’ not for the purpose of inducing sedation.
Alternative terminology proposed by Chater et al, “sedation for intractable distress in the dying,” although more precise, is unlikely to be widely embraced by clinicians. Hence, the onus is on physicians to clarify the medical practice of terminal sedation and the ethical issues surrounding it. For the purposes of this article, the definition of ‘‘imminently dying’’ has two criteria: (1) that there are no treatments or interventions available to prolong life; and (2) that death is anticipated within hours to a week or two at most.
Cherny and Portenoy defined ‘‘refractory’’ symptoms as those that ‘‘cannot be adequately controlled despite aggressive efforts to identify a tolerable therapy that does not compromise consciousness.’’ They then posed the question, when does a ‘‘difficult’’ symptom become a ‘‘refractory’’ one? According to these authors, the factors important in defining this transition are the availability of further therapeutic options, the risk-benefit ratio, the patient’s personal wishes, and whether relief can be achieved within a ‘‘tolerable time frame.’’
Many interventions themselves involve discomfort for the patient. Thus, an important question is, can the patient tolerate more suffering given the chance that yet another intervention might succeed? Since the terminally ill patient’s life span is limited, every hour is proportionately more significant.
The critical distinction between a difficult and a refractory symptom is that there remains some hope that the former can be successfully addressed. The limiting factors are the therapy’s side effects, the patient’s limited remaining life, and his or her willingness to undertake an intervention with a low therapeutic index. There are no fixed rules or infallible guidelines. As Wanzer et al stated: ‘‘The care of the dying is an art.’’
Before instituting any intervention aimed at relieving refractory symptoms, it is crucial to involve the patient or surrogate in informed decision-making. Detailed information should be provided, including therapeutic alternatives risks, and complications. It should be clearly stated that none of these interventions is expected to prolong the patient’s survival. Furthermore, in any discussion of sedation at the end of life, it is assumed that an agreement has been reached that cardiorespiratory resuscitation will not be initiated, in view of the irreversible nature of the disease and the futility of resuscitative efforts.[8,9]
Informed consent is predicated on clear goals of care embodied in the doctor-patient relationship. This relationship is built on mutual trust. Patients trust that the doctor will listen closely to their needs and wishes and, when appropriate, fulfill the agreed-upon goals of care.
Patients also rely on the fact that, as the doctor-patient relationship intensifies toward the end of life, the doctor’s judgment will not be detrimentally influenced by countertransference issues (ie, the arousal, by the patient, of the doctor’s own anxieties and internal psychological conflicts, related to previous or ongoing emotional issues). Thus, patients trust that their doctor will not institute inappropriately aggressive medical interventions; unconsciously avoid making visits; or recommend sedation too hastily.
Feigenberg stated that three demands should be made of doctors who care for dying patients: self-knowledge, empathy, and knowledge of death. According to Feigenberg, knowledge of death meant understanding the fear of death and the myriad ways that it manifests in people with cancer. Mastering these insights would secure the trust of the imminently dying patient and help the difficult decision-making process.