BOX 5.3 Quality Domains Suggested by the American Geriatric Society

Physical and emotional symptoms. Pain, shortness of breath, fatigue depression, fear, anxiety, nausea, skin breakdown, and other physical and emotional problems often destroy the quality of life at its end Symptom management is regularly deficient. Care systems should focus upon these needs and ensure that people can count on a comfortable and meaningful end of their lives.

Support of function and autonomy. Even with the inevitable and progressive decline with fatal illness, much can be done to maintain personal dignity and self-respect. Achieving better functional outcomes and greater autonomy should be valued.

Advance care planning. Often, the experience of patient and family can be improved just by planning ahead for likely problems, so that decisions can reflect the patient's preferences and circumstances rather than responding to crises.

Aggressive care near death—site of death, CPR, and hospitalization. Although aggressive care is often justified, most patients would prefer to have avoided it when the short-term outcome is death. High rates of medical interventions near death should prompt further examination of provider judgment and care system design.

Patient and family satisfaction. The dying patients peace of mind and the family's perception of the patient's care and comfort are extremely important. In the long run, we can hope that the time at the end of life will be especially precious, not merely tolerable. We must measure both patient and family satisfaction with these elements: the decisionmaking process, the care given the outcomes achieved, and the extent to which opportunities were provided to complete life in a meaningful way.

preliminary toolkit was indeed just that, preliminary and awaiting refinement. It recommended an extensive process of testing, adapting, and developing instruments that are (1) relevant to the experiences of dying patients and those close to them, (2) sensitive to the effects of changes in care, and (3) efficient and practical to use. Additional collaborative work to develop this toolkit is planned.


Dozens, even hundreds, of instruments exist to measure health status or quality of life (McDowell and Newell, 1996). For example, one recent review reported 159 different instruments used in the 75 articles analyzed (Gill and Feinstein, 1994). Some were fairly narrow (e.g., hand grip strength,

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