Forum.
Decision-making
Establishing that a symptom is intractable is a necessary precondition for the use of sedation (Rousseau 2004), setting the stage for the decision-making process. Morita et al (Dec 2004) distill the requirements for sedation to: active involvement of patient and family in the decision-making process; severe symptoms accompanied by refractory suffering; and a patient in “poor condition,” presumably meaning advanced illness and a projected short time until death. Despite the controversial nature of sedation for intractable distress, virtually none of the literature on decision-making at the end of life directly addresses sedation (22) and only one peer-reviewed research paper has been published (in Japanese) ( ). Indeed, in a PubMed search combining “decision” and “sedation” in the article title, only two papers are found: Morita et al (22) report a process for determining the most appropriate form of sedation for the individual patient, while Azulay (2004) discusses the ethical context of sedation for intractable symptoms. Other articles address portions of the decision-making process for sedation (C & P; Morita; Morita Dec 2004; Fainsworth—Intent; 2 dyspneic; Rousseau?). Despite the dearth of comprehensive discussions of decision-making, we have devised a systematic approach based on both the literature on sedation for intractable symptoms as well as literature on decision-making in advanced illness or at end of life.
Physician Role
The role of the physician in medical decision-making is defined by the customs, mores, and ethics of his/her culture. Shared decision-making, with a strong emphasis on patient autonomy and active patient participation, is generally considered appropriate in English-speaking countries (Murray; Nava; Weissman) and has been advocated in Europe, but varies regionally (Nava Monaldi 2004). In recent articles both McNutt (2004) and Weissman (2004) refer to the physician’s role as that of navigator, assisting the patient to understand the implications of medical options and eliciting values and goals, but Eckerdal (2004, p 39-40) states that it may be necessary at times to be paternalistic in order to act in the patient’s interest, and “to take full responsibility for the decision,” including refusal to use patient-requested sedation if not deemed in the patient’s interest. Nava (2004) reports a ‘paternalistic view in most European countries.’ Morita (1996) suggests that the nuances of Japanese communication may make it unnecessary to fully inform patients in the legalistic way that ‘informed consent’ is understood in the west. Context and nonverbal, indirect communication may be sufficient. In addition many Japanese, especially the aged, regard decision-making by physicians and family to be very appropriate (Morita 1996).
Patient Role
Most of the literature on decision-making in end-of-life care or palliative care focuses on advance care planning and decisions related to the use, nonuse, or withdrawal of life-sustaining therapies. These discussions tend to be patient-focused and emphasise patient wishes, invoking ethical principles such as autonomy, beneficence, and non-maleficence. It is generally assumed that the patient makes choices among various courses of action based on his or her own best interests. However, both clinical experience and research show that there is intra- as well as inter-patient variability in the need for autonomy and comfort in decision-making (Devereux 1992; Firlik & Schreiber 1992; Arkes). Once made, decisions may be unstable due to a variety of factors. “Pre-commitment” decisions, such as those made during advance care planning, may have a stabilizing influence [Arkes]. The extent to which sedation as a potential future treatment is included in advance planning is not known, but Muller-Busch (2003), Morita et al (Dec 2004) (and Rousseau?) advocate such an inclusion.
Comments