Over the past decade, increased attention has focused on the care of dying patients. The role of the physician in caring for these patients has been the subject of renewed interest and intense, sometimes passionate, debate. Patient groups have formed to advocate for the promotion of compassion in the care of the dying, and some of these advocacy groups have asserted a fundamental right to physician-assisted suicide. The US Supreme Court has ruled against a constitutional right to physician-assisted suicide but has asserted its willingness to reconsider the issue if it learned that dying patients were not receiving appropriate, high-quality end-of-life care.
Given the US Supreme Court ruling, and the context of a population, that, as it ages, is often fearful of being a burden to others, suffering financial hardships, and experiencing pain and suffering, many clinicians who work closely with dying patients are now trying to shift the debate away from the rhetoric of advocacy groups for and against physician-assisted suicide and toward the development of core competencies in the care of the dying patient.
The Importance of Terminology
The article by Dr. Wein is a welcome addition to the burgeoning medical literature on how best to face the challenge of caring for patients at the end of life. We are pleased to see that Dr. Wein has adopted the phrase that we coined, sedation in the imminently dying, rather than the term, terminal sedation, but suggest that the former should have been used consistently throughout the article to prevent confusion. As Dr. Wein notes, the term, terminal sedation, is best avoided because it could be interpreted as meaning either sedation intended for terminally ill patients or sedation for the purpose terminating the patients life.
Given the published data that Dr. Wein cites on the variations in the refractoriness of symptom control near the end of life, sedation is an important option that, when employed by competent practitioners, can ensure a peaceful, comfortable death. We wish to emphasize that dying cancer patients are commonly sedated before they die due to complications of their disease and that any discussion of sedation in the imminently dying must occur within this context. Dr. Wein fails to recognize that, in the appropriate practice of palliative medicine, sedation does not exist as a distinct entity for use in patients who are otherwise comfortable or asymptomatic. Rather, sedation is part of a continuum of good end-of-life care in patients whose medical care is already complicated by a variety of symptoms and often life-threatening medical issues.
Need to Apply Scientifically Validated Guidelines
In his discussion of refractory symptoms, Dr. Wein argues that there are no fixed rules or infallible guidelines, and quotes the comment of Dr. Wanzer and colleagues: The care of the dying is an art. Although we agree that there is a certain degree of art that still imbues the best of medical care, we strongly support the use of scientifically validated guidelines and are wary when discussions of how to care for the dying are not subjected to the same evidence-based standards as are applied to other common problems in medicine.
We do not seek to remove the art from the care of the dying but would underscore the vital importance of adhering to standards as they are developed and adopted. Dr. Weins review of the available literature on useful medications for sedation is helpful, although the lack of controlled trials argues strongly for the need for rigorous scientific research on end-of-life care.
Dr. Wein provides a thoughtful review of the ethical principles of double effect and proportionality and offers moral breathing room for physicians, who, with consent and under certain defined conditions, choose to relieve refractory suffering with sedation. We agree with Dr. Weins conclusion that no good argument can be made for equating terminal sedation (although, as mentioned above, we prefer sedation in the imminently dying) with physician-assisted suicide or euthanasia, particularly since no data are available to support the notion that sedation hastens death. The use of sedation under the conditions set forth by Dr. Wein is part of the practice of competent palliative medicine, and is consistent with well-established guidelines for the relief of pain and suffering in terminally ill patients worldwide.
An Abysmal Report Card
Although controlled trials on many aspects of end-of-life care are lacking, the data on how we as a medical community are faring in caring for dying patients are unequivocal. Any discussion of the merits of sedation vs physician-assisted suicide and the role of the physician in general at the bedside of a dying patient must occur against the backdrop of physicians abysmal report card in this area.
We learned from the SUPPORT  data that 50% of patients dying in acute-care hospitals die in pain. A physician survey sponsored by the Eastern Cooperative Oncology Group (ECOG) revealed that 86% of oncologists believe that the majority of American patients in pain are undertreated. Only 5 of 126 medical schools in the United States offer a separate, required course in the care of dying patients.
The recently published data on the inadequate coverage of death and dying in medical textbooks, coupled with the general lack of attention given to this area in medical education, compel all of us who are concerned about end-of-life care to develop new educational models. The Education for Physicians in End of Life Care (EPEC) model developed by the American Medical Association is an important advance and should be followed by other models, national conferences, and competency standards for board examinations.