Medline ® Abstracts for References 13,25,27,34,35
of 'Advance care planning and advance directives'
Association between advance directives and quality of end-of-life care: a national study.
Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T
J Am Geriatr Soc. 2007;55(2):189.
OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self-Determination Act.
DESIGN: Mortality follow-back survey.
SETTING: People who died in a nursing home, hospital, or at home.
PARTICIPANTS: Bereaved family member or other knowledgeable informant.
MEASUREMENTS: Telephone interviewers that asked about the use of written ADs, use of life-sustaining treatment, and quality of care by asking whether staff provided desired symptom relief, treated the dying with respect, supported shared decision-making, coordinated care, and provided family with the needed information and emotional support.
RESULTS: Of the 1,587 people who died, 70.8% had an AD. Persons who died athome with hospice or in a nursing home were more likely to have an AD. In addition, those with an AD were less likely to have a feeding tube (17% vs 27%) or use a respirator in the last month of life (11.8% vs 22.0%). Bereaved family members who reported that the decedent did not have an AD were more likely to report concerns with physician communication (adjusted odds ratio (AOR)=1.4, 95% confidence interval (CI)=1.1-1.6) and with being informed about what to expect (AOR=1.2, 95% CI=1.0-1.3). No statistically significant differences were observed in other outcomes. Even in those with an AD, important quality concerns remained; one in four reported an unmet need in pain, one in two reported inadequate emotional support for the patient, and one in three stated inadequate family emotional support.
CONCLUSION: Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.
Center for Gerontology and Health Care Research, Brown Medical School, Providence, Rhode Island, USA. Joan_Teno@brown.edu
A critical review of advance directives in Germany: attitudes, use and healthcare professionals' compliance.
Evans N, Bausewein C, Meñaca A, Andrew EV, Higginson IJ, Harding R, Pool R, Gysels M, project PRISMA
Patient Educ Couns. 2012 Jun;87(3):277-88. Epub 2011 Nov 23.
OBJECTIVE: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany.
METHODS: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes.
RESULTS: Thirty-two studies (1996-2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3-62%) and was low amongst the general population (2.5-10%). Fears about ADs' purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients' desired level of bindingness.
CONCLUSION: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness.
PRACTICAL IMPLICATIONS: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase.
Barcelona Centre for International Health Research (CRESIB, Hospital Clínic - Universitat de Barcelona), Barcelona, Spain. email@example.com
Advance care planning and the older patient.
Aw D, Hayhoe B, Smajdor A, Bowker LK, Conroy SP, Myint PK
QJM. 2012 Mar;105(3):225-30. Epub 2011 Nov 10.
Making treatment decisions for older people is difficult, because of the complex interplay of their multiple co-morbidities, but also because of the fine balance of risks vs. benefit in any chosen management plan. This becomes even more difficult when they lose the capacity to tell us what they want, and often in such situations we have to rely on information from others in order to make decisions based on their best interests. Advance care planning should help with making these decisions clearer, based on the documented preferences of what the patient would have wanted while capacity was still present. However, such documents are still very rarely used, and even if they are, health-care professionals are often wary of them for the multitude of ethical and legal problems that can arise.
Norwich Medical School, Chancellors Drive, University of East Anglia, Norwich, NR4 7TJ, Norfolk, UK.
The influence of culture on end-of-life decision making.
J Soc Work End Life Palliat Care. 2011;7(1):83-98.
In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.
Department of Social Work, North Carolina State University, Raleigh, NC, USA. firstname.lastname@example.org
Current research findings on end-of-life decision making among racially or ethnically diverse groups.
Kwak J, Haley WE
Gerontologist. 2005 Oct;45(5):634-41.
PURPOSE: 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.
DESIGN AND METHODS: 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.
RESULTS: 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.
IMPLICATIONS: 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.
School of Aging Studies, University of South Florida, Tampa, 33620, USA. email@example.com