Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

Black, Betty S.; Fogarty, Linda; Phillips, Hilary; Finucane, Thomas E.; Loreck, David; Baker, Alva; Blass, David M.; Rabins, Peter V.

doi:10.1177/0898264309333316

Cited by 83 publications

(112 citation statements)

References 34 publications

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“…Even when the wishes of the person with dementia were explicit, they guided decisions to differing degrees. This finding is interesting in light of evidence that family members see themselves as advocates for their relative 11,12,13 .…”

mentioning

confidence: 85%

“…Numerous factors contribute to the complex nature of surrogate decision making; these include who makes the decisions, how this authority is delegated, and what sources of information are available to guide decision making 12,13 . For example, there is some debate regarding family members' ability to correctly identify care recipients' wishes 14,15 .…”

Section: Introductionmentioning

confidence: 99%

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A qualitative metasynthesis

Petriwskyj

Gibson

Parker

et al. 2014

International Journal of Evidence-Based Healthcare

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Aim. Involving people in decisions about their care is good practice and ensures optimal outcomes. Despite considerable research, in practice family involvement in decision making can be challenging for both care staff and families. The aim of this review was to identify and appraise existing knowledge about family involvement in decision making for people with dementia living in residential aged care.Methods. This Joanna Briggs Institute meta-synthesis considered studies that investigate involvement of family members in decision making for people with dementia in residential aged care settings. While quantitative and qualitative studies were included in the review, this paper presents the qualitative findings. A comprehensive search of studies was conducted in 15 electronic databases. The search was limited to papers published in English, from 1990English, from -2013 Twenty six studies were identified as relevant for this review; 16 were qualitative papers reporting on 15 studies. Two independent reviewers assessed the studies for methodological validity and extracted the data using the Joanna Briggs Institute standardised Qualitative Assessment and Review Instrument (JBI-QARI). The findings were synthesised using JBI- QARI.Results. The findings related to the decisions encountered and made by family surrogates, family perceptions of and preferences for their role/s, factors regarding treatment decisions and the collaborative decision making process, and outcomes for family decision makers. Word count: 251

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mentioning

confidence: 85%

Section: Introductionmentioning

confidence: 99%

A qualitative metasynthesis

Petriwskyj

Gibson

Parker

et al. 2014

International Journal of Evidence-Based Healthcare

View full text Add to dashboard Cite

show abstract

“…This is challenging in planning the future [57,58]. Special concern should be given the patients' competence to consent [59], regardless of legislation on who is the decision-maker regarding life-prolonging treatment or palliative care.…”

Section: What Is Known From Before -What Does This Study Add?mentioning

confidence: 99%

Nursing Home Physicians’ Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands

Fosse

Zuidema

Boersma

et al. 2017

Journal of the American Medical Directors Association

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“…The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85]. Through the beginning of 2010 (Box 1, Table 1), at least 45 studies [28,[33][34][35][36][37][38][40][41][42][43]46,47,52,60,61,63,65,66,80,[86][87][88][89][90][91][92][93][94][95][96][97][98][99]110] in another 26 publications [39,44,45,53,54,64,67,69,[111][112][113][114][115]…”

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

Dying with Dementia: What We Know after More than a Decade of Research

Steen

2010

JAD

225

177

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Abstract. Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.

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Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

Cited by 83 publications

References 34 publications

A qualitative metasynthesis

A qualitative metasynthesis

Nursing Home Physicians’ Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands

Dying with Dementia: What We Know after More than a Decade of Research

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