Over the past several decades, Western medicine's concept of death has evolved from one viewing death as a failure of science and technology to one properly recognizing death as an experience every person must face. With this paradigm shift, educational and research projects in the United States, such as the American Medical Association's Education for Physicians on End-of-Life Care and the Robert Wood Johnson Foundation's Last Acts Campaign, have worked to focus the attention of clinicians on improving the end-of-life experience for patients.
Experts and expert groups that have published frameworks for end-of-life care include the American Geriatrics Society,13 the Institute of Medicine,1415 Emanuel and Emanuel,16 and the American Society of Clinical Oncology (ASCO) (see "Optimal Care at the End of Life" later in this chapter). Although these reports addressed the care of broad populations (and not specifically those affected by germ cell tumors), their recommendations reinforce the importance of attention to a variety of domains of patient and family care in the end-of-life setting for patients with many diseases, including those with germ cell tumors. Such domains include those of pain and symptom management, family support, caregiver support, patient preferences, care across cultures and for minority groups, systems-based barriers to care, and many other issues. Many of these are addressed in this chapter.
Researchers at the University of Toronto undertook a study that specifically examined patients' perspectives on end-of-life care. These researchers interviewed a group of 126 patients consisting of hemodialysis patients (n = 48), patients who were positive for human immunodeficiency virus (HIV) (n = 40), and residents of a long-term care facility (n = 38).17 The results of this study identified five domains of quality end-of-life care that were emphasized by patients:
1. Adequate pain and symptom management
2. Avoidance of inappropriate prolongation of dying
3. Sense of control
4. Relief of burden
The domains described by the University of Toronto researchers mesh well with the components of a "good death" that were elucidated in another study, conducted in Durham, NC, by Duke University researchers who conducted focus groups consisting of physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members.18 This study identified six themes believed to be critical to the end-of-life experience: (1) pain and symptom management; (2) clear decision making; (3) preparation for death by naming a medical decision maker, completing advanced directives, and putting one's financial and related affairs in order; (4) fulfillment of unfinished personal or spiritual commitments; (5) contribution to others; and (6) affirmation of the whole person.18
Although these studies were focused on older populations than those with germ cell tumors, the concepts raised are noteworthy. Both the University of Toronto and Duke University studies demonstrated that patients, care givers, and health care providers are concerned with much more than pain control and symptom relief. Both studies emphasize that most patients want to participate actively in decisions regarding medical interventions at the end of life and desire relief of pain and symptoms without having to sacrifice cognitive capacity. A second theme is the goal of strengthening relationships, fulfilling familial or spiritual obligations, and reflecting on the meaning of one's life. Medicine often deals poorly with these types of existential concerns, which is understandable, given their protean and subjective nature. However, it is possible to do patients a disservice by focusing on the physical aspects of their illnesses to such an extent that inadequate time is spent exploring the patients' own ultimate motivations and priorities for the time that they may have before death. Truly competent care must be committed to helping patients achieve their goals, even at the end of life.
Such care requires a broad view and a spectrum of expertise. In the United States, the Last Acts Palliative Care Task Force,19 a group representing many constituencies that are focused on improving end-of-life care, stated, "Palliative care must focus on the comprehensive management of the physical, psychological, social, spiritual and existential needs of patients while remaining sensitive to patients' goals for medical care and their personal, cultural, and religious values, beliefs, and practices." By its nature, such care usually requires interdisciplinary input and must be available throughout the course of illness, not only at the end of life. If physicians are skilled in palliative care and can access resources that can complement their skills when needed, then regardless of whether the patient's goals are focused on life-sustaining treatments or on comfort alone, it can be feasible for the patient to hope to achieve the best possible quality of life with relief of suffering, control of symptoms, and optimization of psychological and physical functional capacity.
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