Care of the Dying Patient

10. The Path Ahead: Difficult Lessons for Physicians and Society - David A. Fleming

128 10 The Path Ahead: Difficult Lessons for Physicians and Society David A. Fleming Identifying goals of treatment and expressing preferences through advance planning and documentation of it are increasingly important for patients with terminal illness, but accomplishing this is often difficult. This is particularly true for caregivers and patients of advancing age, who often resist participation in discussions about treatment options when they become ill.1 Health-care providers also struggle with decisions in this arena. Considering limitations in treatment for patients with advanced illness can be anathema in a medical culture that strongly promotes patient autonomy and encourages intervention even when death seems imminent. Almost 60 percent of deaths in this country occur in the hospital, and of these, 74 percent occur after decisions have been made to forgo life-prolonging treatment;2 85 percent of all patients with cancer admitted to the ICU die there.3 Clearly, becoming proficient at making decisions about care for dying patients is a primary area of concern for many physicians. Deciding when and how to stop treatment is not easy because there are many unknowns. Physicians’ prognoses of death are notoriously inaccurate.4 In addition, patients are frequently ambivalent about whether they want treatment at the end of life.5 Third, expressions of beliefs and values may not occur at a time when they can be understood by families, physicians, or others involved in patients’ care, or before the ravages of illness and suffering begin to influence 129 The Path Ahead patients’ decisions. If possible, physicians should encourage discussion with patients about end-of-life care at a time when patients are not acutely ill and when they have the time and capacity to participate effectively. The best time to do this is typically in the outpatient setting during routine follow-up rather than in the hospital during acute illness. Caregivers are crucial to the care of patients with chronic illness and become important participants in these discussions because patients often defer to them.6 Family members and significant others typically assume this caregiver role and represent patients to the health-care team and participate in the coordination of care. However, caregivers’ awareness of treatment preferences and what is important to patients may be unclear if timely discussions have not occurred prior to the loss of decision-making capacity in patients . Caregivers who are conflicted or unsure may become frustrated and distressed when decisions must be made for their patients. Even when written or verbal health-care directives exist, they are often difficult to interpret and may not pertain to the clinical circumstances. This frequently leads to further confusion and ambivalence for caregivers and providers who must ultimately decide for patients. Family discussions when patients have sound health and decision-making capacity encourage clarity in directives about treatment goals and the conditions of living that are acceptable or unacceptable to patients as they near death. Physicians may have beliefs about limiting treatment that conflict with patients’ and caregivers’ beliefs. Physicians’ beliefs cannot be avoided and should not be abandoned; however, respect for patient autonomy obligates physicians to prioritize the preferences and welfare of their patients. If doing so requires violating personal moral dictates, then alternatives must be sought to protect both physician and patient. Medical training encourages objectivism and a prudent level of detachment to encourage unbiased clinical judgment, but physicians cannot totally buffer themselves 130 Care of the Dying Patient from personal feelings while in the midst of ethical dilemmas. A successful and ethically grounded physician-patient relationship is bolstered by good communication and shared decision making, which requires careful balancing of the values and beliefs of both parties. In this chapter I will reflect on three important and broad domains of end-of-life care that may challenge the autonomy and beliefs of physicians as well as patients, and at times place them in conflict. First is a discussion on the use of health-care directives in identifying patient preferences ; second, I will redefine futility as a useful concept in the modern paradigm of health care; and third, I will emphasize the importance of spirituality in the realm of health care. In each domain the subtle impact of personal belief is unavoidable and may influence the way information is conveyed to patients and how their care is delivered. Health-Care Directives An advance directive is a written document that tells what a person wants or does not...