End of Life issues and care

Tasks and Decisions

As people approach the end of their lives, they and their families commonly face tasks and decisions that include a broad array of choices ranging from simple to extremely complex. They may be practical, psychosocial, spiritual, legal, existential, or medical in nature. For example, dying persons and their families are faced with choices about what kind of caregiver help they want or need and whether to receive care at home or in an institutional treatment setting. Dying persons may have to make choices about the desired degree of family involvement in caregiving and decision-making. They frequently make legal decisions about wills, advanced directives, and durable powers of attorney. They may make choices about how to expend their limited time and energy. Some may want to reflect on the meaning of life, and some may decide to do a final life review or to deal with psychologically unfinished business. Some may want to participate in planning rituals before or after death. In some religious traditions, confession of sins, preparation to "meet one's maker," or asking forgiveness from those who may have been wronged can be part of end-of-life concerns. In other cultural traditions, planning or even discussing death is considered inappropriate, uncaring, and even dangerous, as it is viewed as inviting death (Carrese & Rhodes, 1995).

All end-of-life choices and medical decisions have complex psychosocial components, ramifications, and consequences that have a significant impact on suffering and the quality of living and dying. However, the medical end-of-life decisions are often the most challenging for terminally ill people and those who care about them. Each of these decisions should ideally be considered in terms of the relief of suffering and the values and beliefs of the dying individual and his or her family. In addition, any system of medical care has its own primary values that may or may not coincide with the values of the person. For example, in most Western medical systems the principles of individual autonomy (though not to the exclusion of family members and intimates) and informed consent are primary. In contrast, many cultures eschew the principle of autonomy and the principle of interactive, community decision-making is thought to be the ideal. Therefore, well-intentioned presentations of treatment or care possibilities by health care providers may overlook a particular person's wish not to discuss death.

Reference

Carrese, J. A., & Rhodes, L. A. (1995). Western bioethics on the Navajo reservation. JAMA, 274, 826-829.