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Family Role
Including family in decision-making may help the patient feel more supported in the decision, but makes the process more complex (Charles, Soc Sci & Med 1999). Such inclusion acknowledges the major impact of serious illness on the family, but the role of the family in decision-making is under-studied (Charles, Soc Sci & Med 1997). When the patient can’t or won’t participate in decision-making the task of decision-making falls to appointed surrogates, family, or physicians. These decisions should be based on the known values, wishes, or directives of the patient ( ). Nava (2004) recommends that ideally physicians, nurses, and the patient’s family share decision-making when the patient is incapacitated, but that families frequently feel that communication with the medical staff is inadequate.
Both Morita et al ( ) and Brajtman (2003) report that families feel a need for continued communication with sedated loved ones even as they acknowledge distress at their suffering. Families are concerned not only about the patient, but worry about the effect of the patient’s outcome on the family unit (Harvey, Cr Care Med 2004;32(9):1975-1976).
Several authors recommend the inclusion of family in the decision-making process regarding sedation (3,4,11,18,26). Morita et al (Sep 2004, Dec 2004) retrospectively studied responses of family members to a loved one’s palliative sedation in Japan. The survey did not directly address the family role in the decision to use sedation, but a theme that emerged was the desire of family to know that all non-sedating attempts to alleviate the target symptom had been tried prior to sedation. They also wanted to be reassured that the patient’s dignity would be maintained while sedated, and that there was no suffering in spite of the sedation. A contemporaneous survey of physicians in Japan found that ___% of them discussed sedation with family and “asked permission” to employ it (Morita et al 2004). In an earlier study, Morita et al ( ) found that about half of families were fully informed of the risks and benefits of sedation, although it is not explicitly stated that this was considered participating in decision-making.
Morita et al (1996) advocate intermittent sedation because knowing that there will be periodic lightening of sedation is reassuring to family members and helps them to accede to the decision to sedate. Family members are expected to work with staff to reach a decision when the patient is unable to participate (Morita 1996).
The environment in which families are expected to make critical decisions for their loved ones is important. Providing information on the process and intent of sedation, expected benefits and potential risks (for both patient and family), and giving time to reflect together with emotional support is crucial (Brajtman 2003; Morita’s 2004 & 2004; Hansen?). Brajtman’s and Morita’s (2004; 2004) (Hansen?) studies suggest that families given this type of support are more comfortable in their decisions
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