TABLE 3-3 Comparison of Domains of Experts, Patients, Family Members, Health Care Providers, and New Proposed Model

Expert Opinion

Consumer Opinion

Emanuel and Emanuel (1998)

IOM (1990)

NHO Pathway (1997)

Patients with HIV, Renal Failure on Dialysis, and Nursing Home Residents (Seale et al., 1997)

Physical symptoms

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

Effective grieving

Achieving sense of control

Economic demands and caregiving demands

Family well-being and perceptions

 

Relieving burdens

Hopes and expectations

 

 

Strengthening relationships

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



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