Perceptions of Behavioral Awareness, Intention, and Readiness for Advance Care Planning: A Mixed-Method Study among Older Indigenous Patients with Late-Stage Cancers in Remote Areas of Eastern Taiwan

Abstract

The first Patient Right to Autonomy Act enacted in Asia in 2019 has enabled every Taiwanese citizen to plan for his/her end-of-life (EOL) in case of incompetency. Advance care planning (ACP) has been highly promoted for individuals with terminal, life-threatening illnesses, particularly in the mainstream society, and efforts have been made by the Taiwanese government to train health care providers in order to optimize patients’ quality of dying. However, such advanced decisions and discussions regarding life-sustaining treatment and EOL care remain scarce among older ethnically minority patients. A multiple-case study employing a mixed-method (n = 9) was undertaken to explore indigenous patients’ ACP perceptions. Both quantitative and qualitative information was obtained from indigenous patients, a minority group whose socio-economic and educational status are different from the general Taiwanese population. An initiative was made to describe ACP behavioral awareness, intention, and readiness of older terminal patients from four tribes with seven late-stage cancers in remote, mountainous areas of eastern Taiwan. Our findings showed that according to the Transtheoretical Model, terminal indigenous patients’ ACP readiness was at a precontemplation stage. Their lack of fundamental ACP awareness, insufficient healthcare resources, life-sustaining value in a Christian faith context, and the prevalent health disparity in the remote communities have negatively affected indigenous patients’ intention to participate in ACP. We provide suggestions to further promote ACP in this group and suggest that health information should be tailored at various readiness stages in order to overcome barriers and decrease ACP literacy discrepancies. This study calls attention to an understudied area of ACP behaviors, an overlooked need in EOL care for older cancer patients of unique cultural backgrounds, and the imperativeness to ensure cultural minority group’s EOL care is consistent with patients’ preferences.

The explorations of the awareness, contemplation, self-Efficacy, and readiness of advance care planning, and its predictors in Taiwanese patients while receiving hemodialysis treatment

“…While these studies provide critical insight, these studies do not reflect how ACP is dealt with in Chinese culture, such as in Taiwan, which underscores the need for culturally specific examinations of ACP. Studies based in Taiwan and Singapore [31] have mostly focused on nurse attitudes [59], patients with cancer [60], nursing home residents [61], and COVID-19 patients [62]. Considering the new legislation of the Patient Right to Autonomy Act and infant stage of ACP is still under practiced in Taiwan, it is evident that there remains relatively low awareness of ACP; this is particularly true when comparing ACP in Taiwan to Western countries that have adopted ACP for several years.…”

How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review

“…The secondary outcome measures investigated ethnicity-related patient and clinician factors affecting presence of ACP in patients’ healthcare record. Nineteen papers addressed these outcomes and were included in the analysis [ 41 - 43 , 45 , 46 , 48 , 50 - 52 , 54 , 55 , 58 , 60 , 61 , 63 , 67 , 69 - 72 ]. The majority (eleven) of these papers were from the USA (39,40,45,47,49,51,56,59,61,63,67], with six based in Asian countries (42,43,52,58,69,70]; two in New Zealand (53,72); and a single UK-based study [ 71 ].…”

“…One frequently cited barrier to ACP was a general lack of awareness and understanding surrounding ACP [ 32 , 41 , 42 , 45 , 55 , 58 , 60 , 63 ]; this was evident across studies of varied ethnically diverse groups, including Pacific patients within New Zealand, Indigenous patients living in Taiwan, Chinese and Malay patients in Singapore, and African American individuals [ 45 , 60 , 63 , 72 ]. Participants stated they had very limited understanding surrounding the aims, options and procedure for ACP [ 72 ].…”

“…Patients also expressed confusion around the legalities of ACP, including around the role and authority of each participant in the decision-making process, and whether an individual could change their mind at a later date [ 60 ]. Of the eight studies which reported a lack of awareness as a barrier to ACP, four explicitly stated this; all four of these involved participants with cancer [ 45 , 60 , 63 , 72 ]. “All patients were predominantly unaware of concepts related to ACP, and none of the cases, nor their family caregivers, had prior experience making life-sustaining treatment (LST) decisions themselves.” [ 45 ].…”

“…Of the eight studies which reported a lack of awareness as a barrier to ACP, four explicitly stated this; all four of these involved participants with cancer [ 45 , 60 , 63 , 72 ]. “All patients were predominantly unaware of concepts related to ACP, and none of the cases, nor their family caregivers, had prior experience making life-sustaining treatment (LST) decisions themselves.” [ 45 ]. …”