Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

Abstract

Background Advance care planning (ACP) facilitates identification and documentation of patients’ treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers. Methods This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants’ experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content. Results A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients’ participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system. Conclusions Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.

Asian patients’ perspectives on advance care planning: A mixed-method systematic review and conceptual framework

“…Patients' belief that talking about ACP would make their relatives sad 55 Patients' concern that ACP would cause distress or burden for family members 41,42,48,50,58 Patients' concern of implications of ACP Patients' concern that ACP would cause conflict within their family members 44,50,58 Patients' concern of the psychological discomfort produced when thinking about a terminal illness 33 Patients' wish to entrust decision-making to family members 25,36,[41][42][43][44]50,57,58 Patients' preference for passive involvement in decision-making…”

Implementing Advance Care Planning in ‘The Age of Deferred Death' - the Hong Kong Experience over 4 Years

“…The survey showed that there is room for improvement in self-competence in death work among health and social care workers, especially among the younger age group, nurses, and those working in acute hospitals ( 29 ). There were also barriers to advance care planning from the patients’ and families point of view ( 30 ), and implementation of service changes ( 31 , 32 ). These studies showed that improvement in end of life care is needed in promotion and training end of life care conversations for health and social care professionals as well as patients and families, and fit for purpose services in both the institutional and community settings.…”

Steigerung der Versorgungsqualität in der Palliativversorgung durch elektronische Gesundheitsakten

“…Planung der Behandlung im Voraus, die auch als Advance Care Planning (ACP) bezeichnet wird, ist ein Gesprächsprozess zwischen Patient*innen und Versorger*innen über Werte, Wünsche und Behandlungsoptionen, der in der EPA dokumentiert wird. Hierbei können Patient*innen eigene Präferenzen für ihre zukünftige Behandlung und Begleitung entwickeln und Bevollmächtigte benennen (Cheung et al 2020). ACP hilft die Lebensqualität zu verbessern, unnötige Behandlungen zu verringern, Kosten zu reduzieren und die Zufriedenheit der Zugehörigen zu erhöhen (Turley et al 2016).…”

“…Problematisch ist hierbei, dass diese Gespräche häufig zu spät, nicht fortlaufend oder gar nicht geführt werden (Cheung et al 2020). In einem Review konnten 16 Studien benannt werden, die in der EPA automatisiert Patient*innen für ACP mithilfe der Kriterien Alter (n=3), Diagnosen mit einer begrenzten Lebenserwartung (n=2), erfolgter Einweisung in eine stationäre Pflegeeinrichtung (n=1) oder der Angabe, dass eine Person Wiederbelebung ablehnt (n=1), identifizierten.…”