Forum.
Discussion
The presence of an intractable symptom is not a sufficient reason to institute sedation. Symptoms are subjective, and distress becomes suffering through a complex psycho-spiritual process that is equally subjective (55). Unrelieved suffering is frequently invoked as a rationale for palliative sedation, but suffering cannot be directly observed by another, nor assumed based on the severity of physical symptoms (20). Sometimes a distinction is made between physical and existential suffering, yet a case can be made that all suffering is existential. Pain (or any other symptom) and suffering are not inextricably nor inevitably tied to each other, and suffering can exist without physical symptoms (55) (Rosen, Lanuke). Assessing and diagnosing suffering is as essential as assessing pain (56), and multidisciplinary decision-making with patient and/or family involvement is essential to an appropriate determination of the need for palliative sedation . This is problematic in settings where there is no palliative care “team” and/or where professional carers are isolated with little or no peer support. Fortunately, support and consultation from distant colleagues and experts via electronic means is increasingly available.
To intentionally reduce patient awareness is a major decision involving issues of autonomy and informed consent (20), and to institute sedation without an intentional process is fraught with ethical, and perhaps legal, risk. Sedation may mean that completing the tasks of life’s end are short-circuited or prevented. . Some patients and families may perceive that sedation, especially continuous sedation, is equivalent to euthanasia, and so either fear it or request it because of that belief. They need a careful explanation of the goals and methods of sedation.
A model decision-making process actively involves patient, family and the care team, and addresses all issues related to proposed sedation for an intractable symptom
Sedation for intractable symptoms is controversial, so a decision-making guideline would be useful Such a guideline or protocol would provide a framework within which carers of diverse clinical backgrounds, values, and spiritual or ethical/moral traditions could work, leading to more consistency in practice and greater comfort for clinicians, patients, and families. We do not know whether the use of protocols for determining refractoriness or making decisions about sedation for intractable distress are widely used, but they exist within guidelines for sedation for intractable symptoms (Braun, Hospicefed?, BWH, NHPCO, others), .
Mount has recommended the use of refined research tools to better define patient populations needing specific therapeutic intervention (34). Instruments used have included the Palliative Prognostic Index (27) and the Edmonton Staging System for cancer pain (33) (27,33), but none of the studies used a systematic assessment tool to determine symptom intractability and/or the need for sedation.
“Shared decision-making” is a model favored by several authors and may be applicable to sedation for intractable symptoms, although the model may fail in the charged atmosphere of end-of-life crisis or intractable distress. Because many patients near death are unable to make decisions for themselves, surrogate decision makers are expected to act in the patient’s best interests [Ellis 1996 BJN; Karlawish Ann Int Med 1999]. The role of families in end-of-life decision-making has not been well defined in the research literature, although specific suggestions have been made regarding the importance of inclusion of family in the process.[C & P 1994]
Culture has a significant impact on end-of-life decision-making, including sedation for intractable symptoms, and this is addressed in the paper by Lum and Radbruch.
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