A Cross-Cultural Dialogue on Health Care Ethics

12. End-of-Life Decisions: Clinical Decisions About Dying and Perspectives on Life and Death

Chapter 12 End-of-Life Decisions: Clinical Decisions about Dying and Perspectives on Life and Death Michael Burgess, Peter Stephenson,Pinit Ratanakul, and Khannika Suwonnakote This chapter applies the discussions of cross-cultural health care ethics to health care institutions' efforts to support persons in end-of-life decisions through the provision of advance directives and perhaps physician-assisted suicide. The clinical innovations of advance directives and physicianassisted suicide are based on the perspective that control over treatment decisions is one of the most important issues for persons who are dying and their care givers. This perspective on death and dying is too clinically oriented, and therefore fails to meet the immediate and pressing needs of dying persons and their care givers. The clinical approach and the ethics reflected by it can be compared to two alternative perspectives, represented in this chapter by the values expressed in Hutterian and Thai beliefs and practices. Understanding Hutterian and Thai cultural perspectives is important for mutual participation in clinical decision making because 790 End-of-Life Decisions 191 increased sensitivity will permit people of those heritages to better reflect their concerns and values in their care for dying persons. Additionally, understanding Hutterian or Thai heritage emphasizes less clinically oriented needs of all dying persons and their care givers, which may be neglected in clinical care for dying persons. Ethics discussions that are characterized by advance directives and physician-assisted suicide reflect this emphasis on autonomy in clinical decisions. Cross-cultural reflection suggests that clinical interventions must not be the sole focus of ethical judgments. Rather, ethical discourse must be treated as a means of building meaning and personal significance around experiences of death and dying. Decisions about end-of-life treatments can be considered as one means of facilitating this important social activity. A clinical perspective on dying Advance directives are intended to establish the limits of clinical care for patients who are terminally ill, irreversibly suffering, and who may be unable to speak on their own behalf. When medical technology and expertise can no longer offer hope of reversal of a condition that threatens life, the focus of health care shifts to palliation. Health professionals must determine the nature and extent of their responsibilities in caring for a wide range of patients whose conditions are irreversible and who often lack the competence to participate in health care decisions. The tragic circumstances of anticipating death and perhaps of reduced competence is often accompanied by pain and other discomforts that reduce the quality of life. Evaluation of when life is worth living and what palliative interventions are worth enduring requires patients' participation. Attempts to manage palliative health care must therefore find a means of engaging patients' values in the health care decisions.1 While seeking close relatives' input is a secondary position, it is far preferable to have had definitive patient input at a time when the patient was competent. Advance directives, derived from early notions of living wills, are documents in which patients express their treatment preferences and may designate substitute decision makers (Emanuel and Emanuel 1989; Emanuel et al. 1991). Explicitly giving patients the choice of refusing life prolonging treatment or of valuing pain relief over risk of death raises for some patients the option of requesting assistance to die sooner. Many clinicians claim that the experience of withholding or even withdrawing of treatment is dramatically different from providing the means for suicide, or actually assisting a patient to die. But from a patient perspective, there may seem to be little difference between the choice to accept the risk of earlier death in order to achieve better pain management, and the choice to accept, for example, higher levels 192 A Cross-Cultural Dialogue on Health Care Ethics of medication in order that death will be sooner. Some clinicians desire to be responsive to dying patients' needs and interests when there is so little that health care can actually offer. They are willing to assist patients' efforts to seek an earlier death (Caralis and Hammond 1992; Kinsella 1991). Advance directives and assisted dying respond to the problems clinicians face when caring for these patients; these are problems with which clinicians have traditionally sought assistance from colleagues, family, friends, lawyers, courts, ethics committees, and consultants. Similarly, patients and their intimate care givers, which include family members and friends, have also been in situations where the clinical care was unsatisfactory; suffering is avoidably...