Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient–Caregiver Dyads—A Mixed-Methods Study

Ali, Noorhazlina; Anthony, Philomena; Lim, Wee Shiong; Chong, Mei Sian; Poon, Edward; Drury, Vicki; Chan, Mark

doi:10.3390/ijerph18137150

Cited by 10 publications

(8 citation statements)

References 69 publications

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“…Conversely, there was also concerns by some patients that in doing their ACP, they would be showing mistrust in their FCGs to make the right EOL decisions for them. These findings are in concordance with findings by Ali et al 24 on English speaking Singaporean patients with mild dementia which found a similar pattern of transference of decision making to family members, leaving them to discuss with healthcare teams regarding treatment decisions. In the face of such deferment of decision making to the FCGs, FCGs ironically may be driven by feelings of guilt and filial piety to engage in life-extending treatments for patients at EOL.…”

Section: Planning For Cognitive Decline and Deathsupporting

confidence: 92%

Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Seow

Pang

Ho³

et al. 2023

Proceedings of Singapore Healthcare

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Background Currently, there is little understanding of how patients with dementia and their caregivers view end-of-life (EOL) care. We thus aimed to study and understand the perception of EOL care by patients with mild dementia and their family caregivers. Methods We conducted qualitative in-depth interviews with 25 patients with mild dementia and their family caregivers belonging to Chinese ethnicity in Singapore. Patients’ and family caregivers’ understanding of illness, patients’ preferences for EOL care and caregiver concerns for the patients were discussed. Thematic analysis was conducted on the transcribed results of the interviews. Results We identified three main themes of person-centred EOL care: planning for cognitive decline and death, supporting patients to die peacefully at home, and supporting family caregivers to cope with patient’s condition. Most patients wanted to die peacefully and be cared for at their home. However, they were reluctant to initiate discussions regarding their future health care and seemed to be in denial that they may decline cognitively in future. Caregiver burden was noticeable for all family caregivers interviewed. Conclusion . Results highlight three important components that would enhance the delivery of patient-centred EOL care in patients with mild dementia. Strategies based on these components can enable family caregivers and health care providers to plan for and provide patient-centred EOL care concordant with patients’ wishes.

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Section: Planning For Cognitive Decline and Deathsupporting

confidence: 92%

Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Seow

Pang

Ho³

et al. 2023

Proceedings of Singapore Healthcare

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“…Barriers exist that must be overcome. For example, newly diagnosed early-stage dementia patients in Singapore were much less likely to acknowledge barriers to advance care planning than caregivers (10.5% versus 58%) [ 100 ].…”

Section: Discussionmentioning

confidence: 99%

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying

2022

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Background The terminal illness of late-stage (advanced) Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding. Aim This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives. Conclusion This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care?

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“… 12 , 13 ) Similarly, a recent study suggested that socio-cultural factors pose barriers in initiating discussions about advance care planning in older persons with dementia. 14 ) Specifically, in Chinese culture, discussing matters related to death has been considered taboo. 15 ) In addition, it is not uncommon in Asian cultures for older people to leave end-of-life decisions to their family members.…”

Section: International and Regional Perspectivesmentioning

confidence: 99%

Challenges and Opportunities for Academic Journals to Serve the Older Population in Western Pacific Region

Jung

Lim

Cesari

et al. 2021

Ann Geriatr Med Res

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Annals of Geriatric Medicine and Research held its inaugural international editorial board virtual meeting on September 16, 2021, to brainstorm ideas for sustainable growth. This special article summarizes the key concepts obtained from the webinar proceedings, with further development of ideas from ensuing discussions occurring after the meeting. From the initial discussion points provided by eight editorial board members, including six presenters, email discussions further enriched these ideas to construct the current special article. The key points discussed were: impactful research and impact factors, international and Asian perspectives, and challenges to sustainable growth. The editors noted the existing gap between the impact factor and research impact as a challenge for the growth paths of regional journals. However, they agreed that persevering with impactful research would ultimately translate into parallel and gradual gains in impact, which is, therefore, consistent with the organic growth of the journal. Acknowledging challenges in navigating between unique Asian perspectives and international outlooks, the editors encouraged academic journals to serve as bridges linking international evidence with the richness of local perspectives. For sustainable growth, the editors suggested that journals may be forged into the academic ecosystems of the region, diversify value streams, and establish themselves as reputable brands in disciplines. By combining these discussions, we proposed the "IMPACT" strategy for journals on the growth path in the region, which stands for IMmersive user experience encompassing authors, reviewers, and readers; Pasteur's quadrant use-inspired research; Asia-Pacific context; Collaborative; and Translation to practice and policy.

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Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient–Caregiver Dyads—A Mixed-Methods Study

Cited by 10 publications

References 69 publications

Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying

Challenges and Opportunities for Academic Journals to Serve the Older Population in Western Pacific Region

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