Quality indicators for end-of-life care in vulnerable elders.

Care for vulnerable elders, many of whom may be near the end of life, has come under increasing scrutiny in the past decade. Studies demonstrate inadequate quality of care with regard to symptom control, matching of care with patient preferences, and optimal resource use at the end of life (1). Several expert panels have concluded that end-of-life care requires improvement (2–4). Their recommendations provide a framework for integrating patient preferences into treatment decisions and for delivering high-quality end-of-life care. The Ethics Committee of the American Geriatrics Society identified areas for improving care at the end of life, including physical and emotional symptoms, support of function and autonomy, advance care planning, aggressiveness of care near death, and patient and family satisfaction (2). The Institute of Medicine Committee on Improving Care at the End of Life designated the following areas as needing improvement (3): overuse of care inconsistent with preferences and prognosis, underuse of care to treat symptoms, untimely referral to hospice, poor technical palliative care, and poor communication about prognosis and treatment preferences. Furthermore, in 1997 a New York State commission identified barriers to providing quality care to dying patients: inadequate professional and public education, legal and regulatory barriers, financial barriers, and underuse of hospice (4). While these panels did not explicitly call for development of measures of quality of endof-life care, achieving their goals would require such measures. The quality indicators reported in this paper aim to assess the provision of care to achieve a “good death.” The Institute of Medicine committee defined a good death as “one that is free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards” (3). Emanuel and Emanuel (5) describe a good death in terms of “modifiable dimensions of the patient’s experience,” including symptoms, relationships and support, hopes, expectations, economic demands, caregiving needs, and spiritual and existential beliefs. Empirical research further describes the components of a good death. A study of 56 deaths identified teamwork, coordination, early nursing involvement, and specification of a key worker as essential for good terminal care (6). Focus groups of chronically ill patients yielded five domains of quality end-of-life care: pain and symptom management, avoiding prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones (7, 8). Another qualitative study added clear decision making, contributing to the well-being of others, and affirmation of the whole person as essential components of a good death (9). In their framework of a good death, Emanuel and Emanuel postulate that five care-system interventions affect the patient’s dying experience: family and friend interventions, psychosocial interventions, sociofinancial interventions, health care institution interventions, and medical provider interventions (5). The indicators presented here focus on institutional and medical provider interventions. Some measures of care at the end of life have been developed (for example, see the Toolkit of Instruments to Measure End-of-life Care at www.chcr .brown.edu/pcoc/toolkit.htm); however, most have not focused on the processes of end-of-life care. A major obstacle to developing quality indicators for end-of-life care lies in identifying the population to whom the indicators should apply. Even in an at-risk population such as vulnerable elders, patients with a very low probability of survival are difficult to identify with accuracy (10). Thus, the quality indicators presented here do not rely on stratification by prognosis. Instead, they focus on patient preferences for care (through advance care planning and decisions about aggressiveness of care) and palliation. A second obstacle to developing end-of-life quality indicators is the dearth of clinical trial evidence relevant to end-of-life care (11– 13). As a result, most quality-of-care indicators in this