Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

Clarke, Gemma; Galbraith, Sarah; Woodward, Jeremy; Holland, Anthony; Barclay, Stephen

doi:10.1186/s12910-015-0034-8

Cited by 15 publications

(19 citation statements)

References 26 publications

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“…In the final stage, the person is bed bound, unable to swallow, spends most of their time asleep and has no capacity to make decisions about their care. The stages were developed from: the research literature, including a systematic review of the international literature on ANH;[24] an observational study of a UK hospital feeding issues team;[25] and the expertise of the research team in decision-making capacity, palliative medicine, feeding issues and medical ethics. The instrument was piloted at research group meetings of academics and clinicians, and was adapted for the lay public by Ipsos MORI, the external research organisation who undertook the survey fieldwork.…”

Section: Methodsmentioning

confidence: 99%

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States

et al. 2017

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BackgroundThere is continuing public debate about treatment preferences at the end of life, and the acceptability and legal status of treatments that sustain or end life. However, most surveys use binary yes/no measures, and little is known about preferences in neurological disease when decision-making capacity is lost, as most studies focus on cancer. This study investigates changes in public preferences for care towards the end of life, with a focus on measures to sustain or end life.MethodsLarge-scale international public opinion surveys using a six-stage patient vignette, respondents chose a level of intervention for each stage as health and decision-making capacity deteriorated. Cross-sectional representative samples of the general public in Great Britain and the USA (N = 2016). Primary outcome measure: changes in respondents’ preferences for care, measured on a four-point scale designed before data collection. The scale ranged from: maintaining life at all costs; to intervention with agreement; to no intervention; to measures for ending life.ResultsThere were no significant differences between GB and USA. Preference for measures to sustain life at all costs peaked at short-term memory loss (30.2%, n = 610). Respondents selecting ‘measures to help me die peacefully’ increased from 3.9% to 37.0% as the condition deteriorated, with the largest increase occurring when decision-making capacity was lost (10.3% to 23.0%). Predictors of choosing ‘measures to help me die peacefully’ at any stage were: previous personal experience (OR = 1.34, p<0.010), and older age (OR = 1.09 per decade, p<0.010). Negative predictors: living with children (OR = 0.72, p<0.010) and being of “black” race/ethnicity (OR = 0.45, p<0.001).ConclusionsPublic opinion was uniform between GB and USA, but markedly heterogeneous. Despite contemporaneous capacitous consent providing an essential legal safeguard in most jurisdictions, there was a high prevalence of preference for “measures to end my life peacefully” when decision-making capacity was compromised, which increased as dementia progressed. In contrast, a significant number chose preservation of life at all costs, even in end stage dementia. It is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity.

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Section: Methodsmentioning

confidence: 99%

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States

et al. 2017

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“…Advance Directives (AD) are legally binding documents that record decisions made while a person has capacity to make a decision regarding the treatment and care that he/she should be given in the event of becoming incapacitated. AD's are meant to express precedent and prospective autonomy in the future and a way of protecting the interests of their creators by enabling them to avoid futile and burdensome treatment (Clarke, Galbraith, Woodward, Holland & Barclay 2015).This compares to Advance Statements in which verbal or written preferences about care are stated but which are not legally binding as is the case in the UK (Alzheimer's Society, 2014).…”

Section: Advance Care Planningmentioning

confidence: 99%

End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

et al. 2016

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Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care.We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member).Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.

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“…It also is necessary to inform older adults on available options for managing health and psychosocial problems accompanying such decline. This information has been suggested to be necessary for older adults to better understand the types of decisions that they do and will need to make …”

Section: Role Of Care and Medical Professionals In Advance Care Planningmentioning

confidence: 99%

“…This information has been suggested to be necessary for older adults to better understand the types of decisions that they do and will need to make. 59 Second, because at least some older adults are hesitant to convey to their family members their wishes regarding end-of-life care, medical and care professionals need to encourage a dialogue through which family members can understand older adults' values and desires. In doing so, these professionals should clarify that advance care planning is not intended to obligate families to follow the older adults' directions without regard for their own thoughts.…”

Section: Role Of Care and Medical Professionals In Advance Care Planningmentioning

confidence: 99%

Reconsidering long‐term care in the end‐of‐life context in Japan

Shimada

Hirayama

Wakui

et al. 2016

Geriatrics Gerontology Int

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In this article, we propose expanding the scope of long-term care such that it involves caring for dying individuals; that is, end-of-life care. In doing so, we identify challenges that families and care/medical professionals face in attempts to design and provide end-of-life care under Japan's societal contexts. Because of the difficulty judging whether an individual is in an end-of-life phase, as well as a growing number of older adults who are unable to communicate their care preferences as a result of cognitive impairment, efforts were almost automatically made to prolong older patients' lives. To respect patients' desires and values, communication among older adults, their families, and care/medical professionals has been increasingly encouraged to make a mutually agreeable end-of-life care decision. At the same time, older adults are expected to indicate their care preferences earlier because their ability to express their ideas should be limited when approaching the end-of-life phase. We thus suggest including advance care planning in the course of long-term care such that older adults, with the help of care/medical professionals, can tell their preferences to their families, who are required to serve as surrogate decision makers in Japan. Our research, however, has shown that Japanese older adults are hesitant to discuss end-of-life issues with their families. On the basis of our findings suggesting older adults' concern that they might make trouble for their families by clarifying their care preferences, we discuss how care/medical professionals should facilitate family discussions on end-of-life care. Geriatr Gerontol Int 2016; 16 (Suppl. 1): 132-139.

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Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

Cited by 15 publications

References 26 publications

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States

End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

Reconsidering long‐term care in the end‐of‐life context in Japan

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