Factors Contributing to the Preferred Method of Feeding in End-Stage Dementia: A Scoping Review

Newman, Roger D.; Ray, Robin; Woodward, Lynn; Glass, Beverley

doi:10.1007/s00455-019-10072-3

Cited by 14 publications

(15 citation statements)

References 38 publications

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“…42 Dysphagia and aspiration pneumonia secondary to dementia are the two most serious comorbidities. 2 In our study, one of the most challenging decisions for PSMs and family caregivers to make dealt with choosing comfort-feeding versus ANH. Comfort-feeding for PWESD has received increased support from both physicians and bio-ethicists since the mid-1980s.…”

Section: Discussionmentioning

confidence: 97%

“…44,45 Furthermore, many people perceive meeting nutritional needs as a basic component of care and, therefore, withholding it is considered a form of euthanasia. 2 However, other studies have found no long-term advantage for ANH, 46 and that natural comfort-feeding promotes comfort and dignity but may not influence survival. 47,44 The uncertainties, as well as the sensitivity associated with communication regarding the choice of comfort-feeding over ANH result in widespread use of ANH in clinical practice worldwide.…”

Section: Discussionmentioning

confidence: 98%

“…20 Once consumption of solid food is no longer possible, there is no consensus about the preferred method for long-term feeding for PWESD. 2 It ranges from comfort-feeding, that is, providing oral feeding based on the patient's wishes only without trying to meet his or her nutritional needs, to providing full nutritional needs using ANH (e.g. PEG or NGT).…”

Section: Discussionmentioning

confidence: 99%

“…1 In the end-stage of the disease, the person loses the ability to speak, smile, or move. 2 The common symptoms include mental confusion, depression, incontinence and urinary tract infections, constipation, pain, and aspiration pneumonia. 3 Eating and drinking difficulties are a major source of both morbidities and stress for people living with dementia and their family caregivers.…”

Section: Introductionmentioning

confidence: 99%

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Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

et al. 2021

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Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.

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Section: Discussionmentioning

confidence: 97%