Dying patients confront complex and unique challenges that threaten their physical, psychosocial, and spiritual integrity. Many patients die prolonged and painful deaths, receiving unwanted, expensive, and invasive care. Patients’ suffering at the end of life can be profound, yet healthcare providers are too frequently ill-equipped to respond to this suffering. Excellent palliative care demands careful attention to diagnostic, prognostic, and therapeutic challenges. The clinician must demonstrate sensitivity to psychosocial and spiritual concerns and provide thoughtful, empathic communication with patients and families. Yet, even when these are done with superb skill, patients and providers will still find that the experience of living with life-limiting illness presents ethical dilemmas. Some are subtle and, perhaps, not recognized. Other dilemmas are easily apparent. This section outlines the key ethical challenges in caring for patients at the end of life.
Chapter 8 is on quality end of life care and presents a conceptual framework with three main elements: (i) control of pain and other symptoms, (ii) decisions on the use of life-sustaining treatments, and (iii) support of dying patients and their families. These elements are key to delivering quality care. They are also the nexus upon which ethical conflicts arise. For example, control of pain, in its extreme, may hasten death. Decisions on the use of life-sustaining treatments depend upon advance care planning and, in its absence, substitute decision making. And support of dying patients and their families recognizes the important role for healthcare providers even when conflicts arise.
Chapters 9 and 10 focus on decision making. The first covers what to do when someone is ill, cannot make decisions for themselves, and has not left clear instructions in the form of an advance directive. This chapter offers detailed suggestions for walking through this process. Chapter 10, on advance care planning, describes the conceptual underpinning of decision making in palliative medicine. The chapter argues that advance care planning is a process with multiple goals, not all of which are directly related to decision making. From the perspective of patients and families, advance care planning also allows them to maintain a sense of control, relieve the burden on loved ones, and strengthen relationships. The process also highlights critical culture differences, always important in bioethics, but which emerge prominently at the end of life. When advance care planning is considered in this total sense, satisfying multiple objectives, clinicians recognize the need to approach patients and families as partners with curiosity and compassion.
We then consider the thorny issues related to euthanasia and assisted suicide (Ch. 11). In many ways, this topic has driven much of the debate about palliative care, even though relatively few people express a true desire to control the time and place of their death in this way. Assisted dying has likely become a flashpoint because such a choice explores most directly questions of what is killing versus letting die at the end of life, and whether such decisions are justified in the face of overwhelming suffering. There is a fair amount of public support for the concept of assisted death, yet it remains illegal in most jurisdictions and these laws are unlikely to change. This probably reflects the high regard for life in all societies, and the strong hesitation to lessen prohibitions against killing, even when some may feel it is the most compassionate option.
Chapter 12 addresses conflict in the healthcare setting at end of life. As much as assisted suicide has dominated news about end of life care in recent years, for the clinician, it is bedside conflicts around treatment decisions that are most prevalent and troubling. Whereas landmark bioethics cases such as Quinlan and Cruzan focused on families wishing to withdraw life-sustaining interventions, most conflicts today arise between clinicians who wish to withhold what they perceive as futile care and families requesting more aggressive treatment. This chapter offers an approach that examines family, healthcare provider, and social/organizational features contributing to these conflicts, and it encourages identifying responsible factors prior to negotiating a solution.
Finally, the last chapter in this section discusses brain death. The diagnosis is described, differentiated from other phenomena such as vegetative state, and criteria given. The authors also discuss the social and legal implications of using a brain death standard and offer an approach to its application in practice.
Caring for patients facing the end of life is difficult for all involved. Frequently, the ethical questions are considerably more challenging than the medical care itself. We hope this section provides the reader with a framework within which to approach these questions.