environmental factors—such as laws, financing mechanisms, and educational programs—that shape the delivery of care. Unless environmental causes of poor quality care are understood and addressed, efforts to improve organizational and individual behavior may prove disappointing. In this context, quality measurement and improvement strategies should

  • allow clinicians and others directly responsible for end-of-life care to evaluate and improve what they are doing on a continuing basis;
  • help policymakers, patients, families, and the public to hold organizations and individuals accountable for how reliably and effectively they care for dying patients; and
  • support systematic research on the effects of different clinical, organizational, and financing options for end-of-life care and on the effectiveness of alternative strategies for improving care and outcomes for patients and those close to them.

Overall, the committee concluded that more effort is warranted to assess patient experiences at the end of life; to evaluate the benefits and burdens of common end-of-life interventions (e.g., mechanical ventilation), including how they are experienced and valued by patients and families; to understand how perceptions, values, and preferences may change during the course of dying; and to improve physician understanding of patient and family preferences. As emphasized throughout this report, the knowledge base about the dying process and the effectiveness of different care strategies is limited. This, in turn, limits efforts to establish and refine standards or benchmarks against which care processes and outcomes can be assessed and improved.

Concepts of Accountability and Quality


Under the banner of accountability, a variety of public and private policymakers, purchasers, health care organizations, researchers, and others have joined together to develop new methods to monitor and influence patient care in hospitals, managed care plans, and other settings. Dictionary definitions of accountability emphasize the state of being answerable or being obliged to report, explain, or justify (see, e.g., The American Heritage Dictionary, 1993). The concept immediately raises the question—"accountability for what?" This report argues that health care personnel and organizations have, in general, not been held responsible for the quality of care for dying patients. In the absence of systems that can measure outcomes and identify problems across care settings, even those who identify themselves

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