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.
Highlights
IntroductionIn the past two decades, governmental and societal efforts were made in Taiwan to promote advance care planning (ACP), the communication process documented to assure patient autonomy and protect human dignity, and the first Asian Patient
In the past two decades, governmental and societal efforts were made in Taiwan to promote advance care planning (ACP), the communication process documented to assure patient autonomy and protect human dignity, and the first Asian PatientRight to Autonomy Act [1] enacted in 2019 has enabled every Taiwanese citizen to plan for his/her end-of-life (EOL) in case of incompetency
Our results indicated that despite all older indigenous patients being comfortable with discussing their own EOL, they never had the chance to do so before participating in this study
Summary
In the past two decades, governmental and societal efforts were made in Taiwan to promote advance care planning (ACP), the communication process documented to assure patient autonomy and protect human dignity, and the first Asian Patient. Right to Autonomy Act [1] enacted in 2019 has enabled every Taiwanese citizen to plan for his/her end-of-life (EOL) in case of incompetency. Health care providers are trained to provide patient autonomy counseling regarding life-sustaining treatment and EOL care to those of limited life expectancy [2]. Advanced treatment and care decisionmaking has proven to effectively assist terminal patients to increase a sense of self-control, alleviate sufferings, and facilitate peaceful deaths which are consistent with older patients’ desires [3,4].
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