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

Abstract

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.

Converting qualitative data into quantitative values using a matched mixed‐methods design: A new methodological approach

“…The detailed themes analysis is beyond the scope of this article and is presented elsewhere (Halevi Hochwald et al, 2020, 2021, 2022). The themes described in a nutshell are shown below and examples of quotes from the themes are presented in Table 2 (Row C).…”

The Communication Challenges and Strength of Nurses’ Intensive Corona Care during the Two First Pandemic Waves: A Qualitative Descriptive Phenomenology Study

“…The inductive procedure enabled the detection of the leading thoughts. Finally, subthemes were collected into a higher level of conceptual themes, which were confirmed and refined as the analysis continued [34]. The analysis continued until no new themes arose [35].…”

Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review

“…Instead, HCPs monitor clinical signs and work with residents and families to make complex decisions about nutrition at EOL [ 9 ]. With a high prevalence of dementia in LTC and a high proportion of LTC residents rated as cognitively impaired [ 10 ], capacity can be limited, and decision-making about nutrition care falls to substitute decision-makers (often family members), which can be very stressful [ 3 , 6 , 7 , 11 , 12 , 13 ]. Both family members and HCPs experience moral strain about EOL nutrition, questioning whether to pursue aggressive nutrition care or discontinue it [ 14 , 15 , 16 , 17 ].…”