Jan-Erik Johansson

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.

Those who endorse the view that death is in some cases bad for the deceased—a view that, as I shall explain, has considerable bearing on many bioethical issues—need to address the following, Epicurean question: When is death bad for the one who dies? The two most popular answers are "before death" (priorism) and "after death" (subsequentism). Part of the support for these two views consists in the idea that a third answer, "at no time" (atemporalism), makes death unsatisfyingly different from other evils. I argue that this objection is mistaken, and that priorism and subsequentism face problems that atemporalism avoids. Moreover, I argue that if it is nonetheless insisted that we must find a time at which my death is bad for me, we can appeal to periods that begin before my death and end after my death. I end with some implications for posthumous harm

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.