'ACT': taking a positive approach to end-of-life care.
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Biomedical subjects
Publications and source records attributed to D M Price.
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This article reports in detail an ethics case consultation involving a decision to forgo life-sustaining treatment for a middle-aged man following a "massive" cerebral bleed resulting in profound brain damage, but not unconsciousness. An unusual feature of this case is that, despite normal intelligence, caring family relationships and a history of life-threatening cardiac disease, vigorous and sustained inquiry could not elicit any indications of this patient's values, perceptions or preferences regarding end of life care. Other than a deliberately autobiographical methodological prologue and a few brief comments at the end, the case is presented straightforwardly and without intercurrent analysis.
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In this study we explored the relationship between the empathy of intensive care unit (ICU) nurses and their ability to assess accurately the perceived needs of family members of patients hospitalized in ICU settings. Thirty family needs were studied by using Molter's 1983 revision of the Critical Care Family Needs Inventory (CCFNI). Data consisted of 92 pairs of CCFNI responses obtained from 92 family members of ICU patients and 60 ICU nurses providing direct care for these patients. Multiple regression analysis was performed to determine the extent to which empathy and nursing experience contribute to accurate assessment of the needs of ICU family members. The more emphatic ICU nurses were, the greater their ability to assess ICU family members' needs accurately on six of the needs studied (p less than or equal to 0.05). Length of nursing experience negatively affected the nurse's ability to assess three of the ICU family members' needs accurately (p less than 0.05).
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This is a descriptive study of the relative importance of needs as reported by 213 family members of 114 patients hospitalized in critical care units of a large, urban, teaching, medical center. In this study we used Molter's Critical Care Family Needs Inventory (revised), an instrument that has been used in other similar investigations, but never before in such a large sample or one with similar demographics. In general, the findings were consistent with those in previous studies using the Critical Care Family Needs Inventory. One striking difference was the relatively low ranking accorded by this sample to the need "to feel there was hope." Parents, spouses, siblings, adult children, and "significant others" ranked their needs in strikingly similar ways. Family members of critically ill patients need two things most: to have honest, intelligible, and timely information and to feel assured that their loved one is being cared for by competent and caring people. Clinical, educational, and research implications are identified and briefly discussed.
In this study we explored the relationship between critical care family members' perceived needs and the assessment of these needs by a confederate sample of intensive care unit (ICU) nurses. Family needs were measured by using Molter's revised Critical Care Family Needs Inventory. Data consisted of 92 confederate pairs of Critical Care Family Needs Inventory responses obtained from 92 family members of adult patients hospitalized in a variety of ICUs and 49 ICU nurses providing direct care for these patients. Paired t tests (two tailed) were calculated to detect significant differences between confederate pairs of family members' perceptions and ICU nurses' assessments of the importance of the needs studied. Family members' perceptions and ICU nurses' assessments of the most and least important critical care family needs were identified. Significant (p less than 0.001 to p less than 0.05) differences were detected between confederate pairs of family members' perceptions and ICU nurses' assessments of the importance of 15 (50%) of the critical care family needs studied. Therefore, it appears that these nurses were only moderately accurate in their assessments of critical care family needs. Implications for nursing practice, education, and research were identified and discussed.
A state government official in New Jersey has written to administrators of the state's nursing homes outlining what he understands to be certain implications of the Conroy, Peter and Farrell decisions of the New Jersey Supreme Court. These include mandatory reporting to and investigation by his office of virtually all cases of contemplated withholding or withdrawal of life-sustaining treatment, even decisions not to hospitalize or dialyze. This directive has aroused health professionals and advocates for patient privacy. The resulting urgent effort to fashion an acceptable alternative to decisional review by government agents is reminiscent of the process which was sparked by the federal government's promulgation of the "Baby Doe regulations" some years ago. Now, as then, a consensus is being fashioned by a wide spectrum of participants. The likely candidate for an alternative to "Granny Doe squads" is, once again, some form or forms of the institutional ethics committee. Any acceptable proposals will have to satisfy the requirement of public confidence in the face of a perception that elderly nursing home patients are particularly vulnerable to "abuse." They should, in the view of these participants in the debate, also acknowledge relevant differences among nursing homes and enhance, rather than discourage, the exercise of responsibility by nursing home leaders and staff members.
Approximately 1 of 500 individuals is a carrier of a balanced chromosome translocation. Since many translocations are inherited, many (but not all) relatives of carriers have a need to be informed of their potential carrier status. Presently, no data are available as to what extent individuals identified as balanced carriers inform at-risk relatives of the problem. We interviewed 12 balanced translocation carriers to learn whether such information had been transmitted to relatives. The 12 propositi had 36 surviving sibs and 21 surviving parents. Of the 36 sibs, 32 were informed of their risk. The four sibs not informed were from two families. Only 16 of the 32 informed sibs had subsequent carrier testing. Of the 21 surviving parents, 14 were told by their children of their carrier status; subsequently, three parent couples were tested. This survey provides data showing that individuals do not always disclose genetic risk information to relatives. Therefore, genetic professionals need to determine if they have a duty to transmit such information to at-risk relatives in light of the harm that may occur when information is withheld.
The cumulative effect of multiple patient deaths upon critical care staff may lead to emotional depletion and spiritual exhaustion. Attitudinal, behavioral, and social factors which contribute to such effects are examined. These factors include unresolved grief, the need to be perfect, projection of one's own needs, overseriousness, lack of sharing, inappropriate sharing at home, norms of solemnity, lack of structured opportunities for sharing, and administrative non-responsiveness. Empirical research to further define the nature and etiology of "staff burnout" is a logical, but most difficult, next step.
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