Friday, July 23, 2004
This presentation is part of : End of Life/Palliative Care
Terminally Ill Patients' Preferences for Involving Family and Physician in Treatment Decisions When Too Ill to Speak for Themselves
Marie Nolan, DNSc, RN, School of Nursing, School of Nursing, Johns Hopkins University, Baltimore, MD, USA
Learning Objective #1: Describe differences in the way that patients with terminal illness wish to involve their family and physician in treatment decisions
Learning Objective #2: Describe differences in terminally ill patients' preferences for control over health care decisions when they are able to make their own decisions and when they are too ill to speak for themselves

PURPOSE: This study explores the role that terminally ill patients prefer that their family and physician play in making health care decisions should they become too ill to speak for themselves. METHODS: 130 terminally ill patients indicated their preferences for control over a health care decision on a scale ranging from autonomous to reliant on others. Patients indicated the influence they wished their stated preferences to have should they become too ill to speak for themselves. RESULTS: When able, most patients preferred to make decisions independent of their family (50%) and to share decisions with their physicians. Should they become too ill to speak for themselves and have to rely on their previously stated wishes to guide care, more patients would defer to their physician's judgments (39% compared with 15% when making their own decisions, P < .001). There was a similar non-significant trend towards reliance upon the family rather than on previously stated wishes. When asked whose input should weigh more, that of the family or the physician, 51% weighed both equally, 42% considered the physician’s input more heavily and only 7% weighed the family’s input more heavily. If too ill to speak for themselves, 48% weighed both equally, 33% would consider the family's input more heavily, and only 19% weighed the physician's input more heavily (P = .05). CONCLUSIONS: Most terminally ill patients prefer to share decision-making with family and physician desiring greater family input if unable to speak for themselves. The results suggest that deciding for patients who cannot speak for themselves may be a far more complex process than has previously been reflected in law, policy, or clinical ethics. Nolan MT, Narenda DP, Sood JR, Terry P, Hughes M, Kub J, Thompson R, Sulmasy D

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Sigma Theta Tau International
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