End-of-Life Decisions and Advance Directives in Palliative Care

Voltz, Raymond; Akabayashi, Akira; Reese, Carol; Ohi, Gen; Saß, Hans-Martin

doi:10.1016/s0885-3924(98)00067-0

Cited by 120 publications

(28 citation statements)

References 33 publications

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“…ADs was a well-covered theme. Studies explored awareness of ADs, use and compliance [138], [144], [145], [146], [147], [148], [149], [150], [151], [152] and desired level of bindingness [150], [153], [154], [155].…”

Section: Resultsmentioning

confidence: 99%

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

et al. 2012

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Aim Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

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Section: Resultsmentioning

confidence: 99%

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

et al. 2012

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“…Participants were from one geographic location in northern California, limiting the generalizability of our results (50). Furthermore, approximately half of the participants contacted study staff in response to flyers, potentially resulting in selection bias.…”

Section: Discussionmentioning

confidence: 99%

Advance Care Planning Beyond Advance Directives: Perspectives From Patients and Surrogates

McMahan

Knight

Fried

et al. 2013

Journal of Pain and Symptom Management

160

172

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Context Advance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions. Objectives To understand what steps best prepare patients and surrogates for decision making. Methods We conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38) aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semi-structured focus groups asked what activities best prepared participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus. Results Mean±SD patient age was 78±8 years and 61% were non-white. Mean±SD surrogate age was 57±10 years and 91% were non-white. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict. Conclusion Beyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.

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“…Yet, it is frowned upon when an individual takes unilateral decisions on issues of dying. The decisions on end of life care are preferably deferred to family members or community elders [9]. In Kenya, for example, 68.2% of respondents in one study indicated they would like a relative to be involved in end of life decision making [10].…”

Section: Introductionmentioning

confidence: 99%

Factors that influence advance directives completion amongst terminally ill patients at a tertiary hospital in Kenya

et al. 2017

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BackgroundAn advance directive (AD) is a written or verbal document that legally stipulates a person’s health care preference while they are competent to make decisions for themselves and is used to guide decisions on life-sustaining treatment in the event that they become incapacitated. AD can take the form of a living will, a limitation of care document, a do-not-resuscitate order, or an appointment of a surrogate by durable power of attorney. The completion rate of AD varies from region to region, and it is influenced by multiple factors. The objectives of this study were to determine the proportion of terminally ill patients with AD and to identify the factors that influence the completion of AD amongst terminally ill patients at a tertiary hospital in Kenya.MethodsThe study was a retrospective survey. All available records of terminally ill patients seen at Aga Khan University Hospital, Nairobi, between July 2010 and December 2015, and that met the inclusion criteria were included in the study.ResultsIn total, 216 records of terminally ill patients were analyzed: 89 records were of patients that had AD and 127 records were of patients that did not have AD. The proportion of terminally ill patients that had completed AD was 41.2%. The factors that were associated with the completion of AD on bivariate analysis were history of ICU admission, history of endotracheal intubation, functional status of the patient, the medical specialty taking care of the patient, patient’s caregiver discussing the AD with the patient, and a palliative specialist review. On multivariate regression analysis, discussion of AD with a caregiver and patient’s functional impairment were the factors with statistically significant association with completion of AD.ConclusionsThe proportion of terminally ill patients that had AD in their medical records was significant. However, most terminally ill patients did not have AD. Our data, perhaps the first on the subject in East Africa, suggest that most of the factors associated with AD completion mirrored those seen in other regions of the world. Discussion between patient and their physician and patient’s functional impairment were the factors independently associated with completion of AD. Therefore, physicians need to be aware of the importance of discussions of AD with their patients.

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End-of-Life Decisions and Advance Directives in Palliative Care

Cited by 120 publications

References 33 publications

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

Advance Care Planning Beyond Advance Directives: Perspectives From Patients and Surrogates

Factors that influence advance directives completion amongst terminally ill patients at a tertiary hospital in Kenya

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