. "3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst." Improving Palliative Care for Cancer. Washington, DC: The National Academies Press, 2001.
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Improving Palliative Care for Cancer
TABLE 3-3 Comparison of Domains of Experts, Patients, Family Members, Health Care Providers, and New Proposed Model
Emanuel and Emanuel (1998)
NHO Pathway (1997)
Patients with HIV, Renal Failure on Dialysis, and Nursing Home Residents (Seale et al., 1997)
Overall quality of life
Safe and comfortable dying
Receiving adequate pain and symptom management
Psychological and cognitive symptoms
Physical well-being and functioning
Self-determined life closure
Avoiding inappropriate prolongation of the dying
Social relationships and support
Psychosocial well-being and functioning
Achieving sense of control
Economic demands and caregiving demands
Family well-being and perceptions
Hopes and expectations
Spiritual and existential beliefs
SOURCE: Based on Teno et al., 2001.
Experts and consumers agree in many ways about what is important to end-of-life care—physical comfort, emotional support, and autonomy—but they have significant areas of disagreement, as well (e.g., on unmet needs; Table 3-3). Family members want more information on what to expect and how they can help their dying loved ones. Patients and families emphasize the importance of closure at the end of life, including issues of personal relationships. Families often speak of frustration with the lack of coordination of medical care. It often isn’t clear who was in charge, different health