After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Abstract

Objectives We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.

Physician-Assisted Suicide in Dementia: Paradoxes, Pitfalls and the Need for Prudence

“…The significant discrepancy between these results suggests that legalization of PAS may produce significant shifts in the attitudes of caregivers towards this practice, regardless of their earlier attitudes; moreover, such attitudes and shifts are unlikely to be uniform, and may be crucially influenced by variables such as sex and ethnicity (Owen et al, 2001;Wicher and Meeker, 2012;Stolz et al, 2015;Cohen-Mansfield and Brill, 2020) as well as by individual political and religious beliefs (Kemmelmeier et al, 2002;Richter et al, 2001;O'Dwyer et al, 2016). These are not independent of each other; for example, a survey of African-Americans found that several factors, including their cultural and spiritual values and their attitude towards the healthcare system, influenced their lower preference for euthanasia or PAS (Wicher and Meeker, 2012).…”

“…Further searches were conducted within these results using the additional search terms "caregiver," "caregiver burden," "stress," "behavioral and psychological symptoms of dementia," "BPSD," "economic," "financial," "autonomy," "dignity," "identity," "personhood" and "ethics." By this method, a total of 103 citations were retained (Pereira, 2011;Schuurmans et al, 2021;Kemmelmeier et al, 2002;Bradley, 2009;Baeke et al, 2011;Chakraborty et al, 2017;Madadin et al, 2020;Nichols, 2013;Emanuel et al, 2000;Krag, 2014;Trachtenberg and Manns, 2017;Bilchik, 1996;Lazar and Davenport, 2018;Karrer et al, 2020;Stakišaitis et al, 2019;Finucane et al, 2007;Finucane, 1999;Sachs et al, 2004;Dominguez et al, 2021;Meier, 1997;Liu et al, 2020;Gao et al, 2019;Gilhooly et al, 2016;Watson et al, 2019;Cheng, 2017;Biggs et al, 2019;Fam et al, 2019;Dening et al, 2013;Owen et al, 2001;Cohen-Mansfield and Brill, 2020;Anderson et al, 2019;O'Dwyer et al, 2016;Bravo et al, 2018;Wicher and Meeker, 2012;Stolz et al, 2015;Seike et al, 2021;Kashimura et al, 2021;Zwingmann et al, 2018;…”

“…For the purpose of the review and analysis presented below, the PubMed, ProQuest and Scopus literature databases were searched using the broad search terms “dementia” AND either “euthanasia,” “assisted suicide,” “physician-assisted suicide” or “medical assistance in dying.” After removal of duplicates, a total of 642 citations were retrieved via this initial search. Further searches were conducted within these results using the additional search terms “caregiver,” “caregiver burden,” “stress,” “behavioral and psychological symptoms of dementia,” “BPSD,” “economic,” “financial,” “autonomy,” “dignity,” “identity,” “personhood” and “ethics.” By this method, a total of 103 citations were retained ( Pereira, 2011 ; Schuurmans et al, 2021 ; Kemmelmeier et al, 2002 ; Bradley, 2009 ; Baeke et al, 2011 ; Chakraborty et al, 2017 ; Madadin et al, 2020 ; Nichols, 2013 ; Emanuel et al, 2000 ; Krag, 2014 ; Trachtenberg and Manns, 2017 ; Bilchik, 1996 ; Lazar and Davenport, 2018 ; Karrer et al, 2020 ; Stakišaitis et al, 2019 ; Finucane et al, 2007 ; Finucane, 1999 ; Sachs et al, 2004 ; Dominguez et al, 2021 ; Meier, 1997 ; Liu et al, 2020 ; Gao et al, 2019 ; Gilhooly et al, 2016 ; Watson et al, 2019 ; Cheng, 2017 ; Biggs et al, 2019 ; Fam et al, 2019 ; Dening et al, 2013 ; Owen et al, 2001 ; Cohen-Mansfield and Brill, 2020 ; Anderson et al, 2019 ; O'Dwyer et al, 2016 ; Bravo et al, 2018 ; Wicher and Meeker, 2012 ; Stolz et al, 2015 ; Seike et al, 2021 ; Kashimura et al, 2021 ; Zwingmann et al, 2018 ; Gitlin et al, 2019 ; von Känel et al, 2019 ; Zwingmann et al, 2019 ; Gerk, 2017 ; Kipke, 2015 ; Deardorff and Grossberg, 2019 ; Tiel et al, 2015 ; Borroni et al, 2008 ; Kim et al, 2021 ; Yunusa et al, 2019 ; Seibert et al, 2021 ...…”

“…Likewise, a more recent study presented Israeli caregivers who had provided end-of-life care to a relative with two end-of-life scenarios, one related to advanced dementia and one to physical disability. Responses to the dementia scenario were ambivalent, with only 48% of the sample (40 of 83 subjects) expressing a clear preference for PAS ( Cohen-Mansfield and Brill, 2020 ). A qualitative analysis of blog posts made by dementia caregivers found a similar lack of uniformity – while themes related to death ( n = 73), deterioration ( n = 57), hospice care ( n = 57) and decision-making ( n = 41) were expressed across several posts, explicit references to euthanasia or PAS were much less common ( n = 12); even references to suicidal ideation on the part of the caregiver were relatively more frequent ( n = 15) ( Anderson et al, 2019 ).…”

“…Advocates of PAS in dementia could credibly respond to the three preceding sections by suggesting that the practice should be confined to patients with severe or “terminal” dementia, where the patient’s life expectancy is already low and there is little or no scope for improvement ( Mondragón et al, 2020 ). The typical case scenario discussed in this context is that of a patient with advanced dementia who has difficulties in feeding himself, has limited or no mobility, and has developed (or is at risk of developing) complications such as decubitus ulcers or aspiration pneumonia ( Cohen-Mansfield and Brill, 2020 ). In discussing such scenarios, an important distinction needs to be made between passive acts (refusal or denial of care) and active assistance on the part of the physician, such as provision or administration of a lethal drug, as would occur in PAS ( Allen, 2020 ).…”