It is a propitious time for the publication of Dr. Weins thoughtful paper on sedation in the imminently dying. Although this intervention has been accepted by most palliative care specialists for many years, it seems to be unfamiliar to many oncologists. The numerous surveys[1-7] and published guidelines that have informed discussions of the technique have not appeared in the oncology literature and probably have been read by few of the front-line clinicians who care for dying cancer patients. Like the broader model of palliative care of which it is part, sedation in the imminently dying must be mainstreamedie, understood in all its complexity by clinicians whose patients may benefit most from its skillful application.
Role of Sedation in the Context of Palliative Care
Oncologists should have a clear understanding of the role of this therapy vis-à-vis the broader model of palliative care. Sedation is one technique that may be needed to address a specific set of very challenging problems that arise at the end of life. It is an option that may be considered during the ongoing effort to provide a range of strategies that constitute optimal palliative care. Most oncologists perceive the relief of suffering at the end of life to be part of good oncologic practice, but the meaning and scope of palliative care, including the integration of end-of-life care within a broader approach, are just beginning to be acknowledged in the oncology community.
Palliative care is an interdisciplinary therapeutic model that focuses on the comprehensive management of the physical, psychological, social, and spiritual needs of patients with an progressive, incurable illness and their families. The model applies throughout the course of the illness, and includes an array of interventions that are intended to maintain the quality of life, or attenuate the suffering, of patients and family. As death approaches, palliative care must intensify to ensure that comfort is a priority, practical needs are addressed, psychosocial and spiritual distress is managed, values and decisions are respected, and opportunities for personal growth are available.
Palliative care is both a model approach to patient care that oncologists should routinely integrate with life-prolonging therapies and a growing practice specialty for highly trained physicians, nurses, social workers, chaplains, and other professionals. Specialists, who typically work in established teams, are usually needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicting or unclear goals of care, distress related to the process of dying, and increasing family burden.
Challenges Involved in Using Sedation in the Imminently Dying
The medical and ethical/legal challenges inherent in the practical use of sedation in the imminently dying are such that oncologists should consider the value of specialist review before proceeding with this intervention. In the United States, however, few physicians specialize in palliative medicine. Thus, it is likely that most oncologists will receive limited assistance in attempting to address the problem of intense patient suffering at the end of life. Referral of the patient to a certified hospice program can be helpful but may not provide specialist level assistance with a specific medical therapy, such as sedation. In the future, the need for highly sophisticated interventions in complex situations hopefully will be addressed through the widespread availability of programs that provide and coordinate specialized levels of palliative care in institutions and the community.
Points Meriting Emphasis
Without routine access to specialists, oncologists who are willing to offer sedation at the end of life must understand both the medical and ethical implications of this intervention. From this perspective, several points mentioned by Dr. Wein deserve emphasis.
First, the appropriate use of sedation in the imminently dying (a term preferable to terminal sedation) implies that the clinician has completed a comprehensive assessment, understands the nature of the problems causing refractory suffering, and has a strong working knowledge of the range of approaches that could be used to treat them. Among other problems, oncologists should be skilled in the management of pain, dyspnea, and delirium; they should be able to recognize anxiety and depression, spiritual distress, and family crisis, and should refer patients with these problems to the appropriate specialists.
Second, the use of sedation in the imminently dying presupposes good communication skills and the application of bedside ethics that are within the purview of all clinicians. The most relevant issues include a clear explanation of the goals of care, the role of advance directives and informed consent (from patient or proxy), and an ability to discuss and implement the important principle of double effect. As Dr. Wein explains, this principle makes a moral distinction between the intention behind an action and the foreseeable, but unintended, consequence of that action. In some cases, a consultation with a bioethicist is very helpful.
Third, implied in the principle of double effect is a continuing reconsideration of the intent of therapy; this requires both repeated explanations to the family and staff, and an oft-unspoken element of introspection. It is a very human tendency to wish for death when life seems meaningless, and recognition by the staff that they are experiencing these feelings may be important. These feelings do not alter the medical and ethical/legal foundation of the treatment, however. Clinicians must be firm in reinforcing their intent (ie, to ease suffering) and the goals of the treatment.
Fourth, sedation in the imminently dying must be openly distinguished from assisted suicide and euthanasia. Whereas sedation is intended to produce somnolence sufficient to relieve suffering, assisted suicide and euthanasia are meant to produce death to relieve suffering. In this context, openly distinguished also means documented in the medical record.
Questions Requiring Thoughtful Consideration
Finally, recognition by oncologists that sedation in the imminently dying is a bona fide clinical intervention with specific indications and guidelines for practice does not eliminate the challenges involved in its implementation. Published surveys notwithstanding, the literature on this topic is still very limited, and many questions can be resolved only on a case-by-case basis.
As sedation in the imminently dying is explored in the clinical setting, the following questions require thoughtful consideration:
How certain should imminent death be before this option is considered?
How much therapeutic effort is needed before a problem is perceived to be refractory?
Can sedation for suffering in the absence of a physical symptom, ie, for existential distress, be undertaken using the same guidelines as are applied to cases of refractory delirium or uncontrollable pain?
What should constitute informed consent if the potential for earlier death is a recognized element of the principle of double effect?
The relief of suffering is a fundamental tenet of oncology practice. The use of sedation can be profoundly therapeutic, and oncologists should have an understanding of this intervention as part of a broader effort to optimize palliative care at the end of life.