JAMA : the journal of the American Medical Association
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Multicenter Study Comparative Study
Neonatal end-of-life decision making: Physicians' attitudes and relationship with self-reported practices in 10 European countries.
The ethical issues surrounding end-of-life decision making for infants with adverse prognoses are controversial. Little empirical evidence is available on the attitudes and values that underlie such decisions in different countries and cultures. ⋯ In our study, physicians' likelihood of reporting setting limits to intensive neonatal interventions in cases of poor neurological prognosis is related to their attitudes. After adjusting for potential confounders, country remained the most important predictor of physicians' attitudes and practices. JAMA. 2000;284:2451-2459.
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Discussions about end-of-life issues are difficult for clinicians to initiate. Patients, their families, and clinicians frequently collude to avoid mentioning death or dying, even when the patient's suffering is severe and prognosis is poor. In addition to determining from observational research when and where communication problems exist, much can be learned from in-depth discussions with patients, family members, and physicians who are facing these issues together. ⋯ Studies from the medical literature, the patient's and physician's particular experience together, and the author's clinical experience provide practical insights into how to address these issues. Initiating end-of-life discussions earlier and more systematically could allow patients to make more informed choices, achieve better palliation of symptoms, and have more opportunity to work on issues of life closure. JAMA. 2000;284:2502-2507.
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Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care. ⋯ Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care. JAMA. 2000;284:2469-2475.
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Nursing homes are the site of death for many elderly patients with incurable chronic illness, yet dying nursing home residents have limited access to palliative care and hospice. The probability that a nursing home will be the site of death increased from 18.7% in 1986 to 20.0% by 1993. Dying residents experience high rates of untreated pain and other symptoms. ⋯ Reimbursement incentives, contractual requirements, and concerns about health care fraud also limit its use. Changes in health policy, quality standards, and reimbursement incentives are essential to improve access to palliative care and hospice for dying nursing home residents. JAMA. 2000;284:2489-2494.