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Am Fam Physician. 1999;59(9):2611-2614

Knowing what most patients consider to be quality care at the end of life can be useful when discussing the subject of end-of-life care with patients and family members. To determine which issues are important to patients, Singer and colleagues conducted in-depth interviews of patients to identify which elements of end-of life care are most important to them.

The 126 patients in the study were from three groups: 48 patients on renal dialysis, 40 patients with human immunodeficiency virus (HIV) infection and 38 patients who were residents at a long-term care facility. The subject of end-of-life care was approached initially by asking the participants open-ended questions to elicit information about their views on advance care planning and other issues related to end-of-life care. The interviews proceeded until no new concepts about end-of-life care emerged. The interviews were analyzed qualitatively to classify issues that emerged in the interviews into various categories, or domains.

Five major domains relating to quality end-of-life care were extracted. The five most prevalent concepts mentioned by the participants were the following: (1) receiving adequate pain/symptom management; (2) avoiding prolongation of dying; (3) having a sense of control; (4) relieving the burden to loved ones; and (5) strengthening relationships with loved ones.

Of these five domains, avoidance of prolonged dying was the one most frequently mentioned, with 77 (61.1 percent) of the 126 participants expressing a concern about “lingering” and “being kept alive” after they no longer could enjoy their lives. Three of the five domains—achieving a sense of control during dying, relieving the burden that dying would pose on loved ones and strengthening relationships with loved ones during the dying experience—were mentioned by a similar number of participants, 48 (38.1 percent) in the first two groups and 49 (38.9 percent) in the third group. The fifth most common domain—receiving adequate pain and symptom control—was cited by 28 (22.5 percent) patients. The sixth most common category was mentioned by less than 5 percent of patients.

The authors conclude that the five domains identified in their study may serve as a conceptual foundation for improving the quality of care at the end of life. When the authors compared the end-of-life issues raised by the patients in their study with those identified in other studies, they found some differences in content. See the accompanying table for a summary of the domains of quality end-of-life care identifed in other studies and in the current study. The authors note that the descriptions of quality end-of-life care obtained from the patients in their study are more straightforward, more specific and simpler than those derived from expert models.

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