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Abstract

End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices. Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N=3,838). Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and recent experience with the painful death of a loved one all influence end-of-life preparations. Consistent with past studies, we also found that education, gender, marital status, and religious affiliation affect end-of-life planning. Health care providers may encourage end-of-life preparations by assuaging patients' death anxiety and fostering decision-making autonomy. Initiating discussions about recent deaths of loved ones may be an effective way to trigger patients' own end-of-life preparations.

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Current research findings on end-of-life decision making among racially or ethnically diverse groups.

David Haley, Jung Kwak (2005)

We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.

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Conflict associated with decisions to limit life-sustaining treatment in intensive care units.

J Tulsky, K. Abernethy, Wiley Abbott … (2001)

To determine the incidence and nature of interpersonal conflicts that arise when patients in the intensive care unit are considered for limitation of life-sustaining treatment. Qualitative analysis of prospectively gathered interviews. Six intensive care units at a university medical center. Four hundred six physicians and nurses who were involved in the care of 102 patients for whom withdrawal or withholding of treatment was considered. Semistructured interviews addressed disagreements during life-sustaining treatment decision making. Two raters coded transcripts of the audiotaped interviews. At least 1 health care provider in 78% of the cases described a situation coded as conflict. Conflict occurred between the staff and family members in 48% of the cases, among staff members in 48%, and among family members in 24%. In 63% of the cases, conflict arose over the decision about life-sustaining treatment itself. In 45% of the cases, conflict occurred over other tasks such as communication and pain control. Social issues caused conflict in 19% of the cases. Conflict is more prevalent in the setting of intensive care decision making than has previously been demonstrated. While conflict over the treatment decision itself is most common, conflict over other issues, including social issues, is also significant. By identifying conflict and by recognizing that the treatment decision may not be the only conflict present, or even the main one, clinicians may address conflict more constructively.