Association Between Current Medical Decision-Making Participation Self-Efficacy and Advance Care Planning Engagement Among Older Adults: Baseline Findings from a Nationwide Longitudinal Cohort Study

Key Message

Taiwanese older adults with better decision-making participation self-efficacy were more likely to consider advance care planning but not tell physicians or other medical decision makers. Assigning medical surrogate(s) should be common practice, but only those with high self-efficacy were more likely to participate in advance care planning discussions. Strategies are required to enhance decisional self-efficacy for older adults, thereby increasing timely advance care planning discussions in home care settings.

Introduction

Providing advance care planning (ACP) for older adults has been recommended to elaborate and clarify their medical decisions and honor their voices in treatment and end-of-life care preferences. ¹ Expressing care preferences and life goals can facilitate person-centered care outcomes across settings.^1,2 Research has reported the benefits of involving community-dwelling older adults in ACP communication. Benefits include improvements in quality of end-of-life care and utilization of health care resources.^1,2

Misconceptions about aging and cultural differences in medical decision making and mental capacity assessment may influence older adults’ engagement in both current treatment and ACP discussions, and advance directive (AD) completion. For example, older adults are often ignored and are not involved in their treatment decision-making discussions owing to their aging status. Their inability to make decisions is assumed. ³ Furthermore, some older adults do not feel confident that their expressed wishes will be followed. They assume that their families would eventually overrule their wishes during emergencies. ⁴ Evidence also showed that granting medical decision-making authority to the primary health care team is a common practice among older adults in Taiwan. ⁵ Therefore, many older adults rely on strong family and social support and trust that appropriate decisions will be made by their loved ones or medical team. ⁴ Collectively, these contextual factors contribute to low self-efficacy in medical decision making among older adults, which subsequently results in an unwillingness to engage in ACP and being unprepared to exercise their right to self-determination regarding both current treatment and future end-of-life care choices.

Previous research has reported the relationship between self-efficacy and ACP engagement among older adults,^6,7 or how individual characteristics, self-perceived quality of communication with physicians, ⁷ quality of life, and satisfaction of care influence their self-efficacy for current medical decision-making participation. ⁸ However, the association between self-efficacy for current medical decision making and readiness of planning future care among these clients receives little attention. A hybrid approach to ACP, encompassing both immediate and future medical decision making, has been suggested as a realistic practice for daily application. ⁹ The integration of person/family-centric communication improves the preparation of all parties for making difficult decisions in the near future, while also maintaining the flexibility to make adaptive and responsive decisions as needed in the current disease situation. ⁹ Therefore, individuals’ choices regarding current medical decisions would be linked to their preparation for future care. ¹⁰

In Taiwan, according to the Patient Right to Autonomy Act enacted in 2019, the ACP standard of process indicates that individuals must be accompanied by at least one close family member to attend ACP consultations, be assessed for their decisional capacity by the medical team, and express their future care preferences by completing documents of ADs.^5,11 Homebound older people in Taiwan who have a high proportion of multimorbidity, cognitive impairment, and symptom burdens rarely complete official ACP. However, integrated care cannot be provided if the multidisciplinary medical team is unaware of their thoughts on care, both at the moment and in the future. ¹² Segmented care and poor quality of death at home in the community for older adults are detrimental to facilitating continuous and goal-concordant care. ¹³

Limited evidence is available regarding decision-making self-efficacy and ACP engagement among older adults receiving home-based care and their family caregivers. Therefore, this study aimed to explore current medical decision-making participation self-efficacy, readiness for ACP engagement, and their association among older adults receiving home-based medical care (HBMC) in Taiwan. We hypothesize that older adults with higher self-efficacy in medical decision-making participation are more likely to be better prepared for engaging in ACP.

Methods

Results

Discussion

To the best of our knowledge, this is the first nationwide cohort study in the Chinese cultural context to examine on comprehensive assessments of home health care recipients. Participants reported moderate self-efficacy in decision making but low ACP engagement. People in high or moderate tertiles of self-efficacy had a higher chance of better ACP engagement. Participants with moderate or high self-efficacy had a much greater chance of reaching the contemplation stage based on the Transtheoretical Model of Behavior Change than those with low self-efficacy in decision making, but the chance to reach the preparation/action stage was much lower. Only participants with high self-efficacy had a significantly higher chance of preparing and acting for ACP (i.e., signing official papers to appoint a medical surrogate).

Low self-efficacy and readiness to engage in ACP discussions among older adults may be attributed to varying family dynamics. This includes family-led medical decision making ²⁰ or, in contrast, well-established family support with strong bonding. ²¹ For example, in the Asian context, health care teams often consult family members on future care plans for older patients, ²² with limited involvement of the patients themselves. This approach is often assumed to be due to either the patient’s impaired decisional capacity or a cultural inclination to involve family members in decision making. ²³ Moreover, the disclosure of diagnoses or prognoses to older patients may not be culturally favored and is context-specific. ²² Family caregivers may fear that such disclosures could diminish patients’ hope in coping with illness, conflicting with local traditions.^24,25 Conversely, patients with robust family support and close connections with significant others such as family members, friends, or health care teams may not feel the need to express or document their future care preferences. In such cases, patients trust that their significant others understand and will make decisions in their best interests. ⁴ This may clarify why individuals with high self-efficacy often appoint someone to speak on their behalf without having detailed discussions about their care preferences or signing official papers.

Moreover, the older generation, shaped by an era dominated by medical paternalism, typically does not negotiate their care plans with their respective medical team. In this context, patients would prefer their family or physician to be the primary decision maker in ACP. ²⁴ Therefore, we recommend including family caregivers in ACP discussions for older adults. However, it remains crucial to provide opportunities for older adults to voice their preferences in consideration of the potential for inconsistent opinions. ²¹ Health care staff should use various strategies to facilitate discussions and documentation of care plans for older adults. This proactive approach is essential to enable better quality, goal-concordant care. ²⁶

The presence of multimorbidity and frailty in older individuals adds complexity to their illness experiences, thereby introducing uncertainty into the care provided to this population.^27–29 Uncertainty is ubiquitous in geriatric care, ³⁰ and can lead to distress and decision paralysis,^31,32 potentially limiting an individual’s ability to engage in ACP. ³³ This may have contributed to the observed lower self-efficacy and readiness for ACP-related decisions among older adults in our study, given the presence of numerous uncontrolled factors and the challenging nature of envisioning hypothetical clinical scenarios. ⁹ A recent systematic review further supports the notion that uncertainty is experienced by all stakeholders, including older individuals, caregivers, and health professionals, across various domains such as “appraising and managing multiple illnesses,” or “continual change.” ³¹ Consequently, older patients tend to make the “in-the-moment decisions,” rather than “future care” decisions in advance.

In our study, many older patients expressed willingness to engage in ACP (contemplation stage), but very few would take action (preparation and action stage). ¹⁹ This could be explained by the rigid and complex procedures of participating AD-oriented ACP in Taiwan, which has hampered its uptake. According to the Taiwanese government legislation (i.e., the Patient Right to Autonomy Act), individuals who would like to commence the formal ACP and complete the AD must be accompanied by at least one family member to attend ACP consultations with the medical team, and be assessed for their mental capacity. ¹¹ In Taiwan, the Mental Capacity Act 2005 (the United Kingdom) four-element test (i.e., understand, retain, use or weigh, and communicate) ²⁶ is adopted for mental capacity assessments instead of using psychometric tools such as the Mini Mental State Examination ³⁴ or MacArthur Competence Assessment Tool-Treatment, ³⁵ which may lead to varied assessment results across professionals and settings and exclude a significant portion of older people, as their mental capacity often fluctuates. ³ Moreover, family members may be consulted to speak on behalf of older patients regardless of whether the older adults possess mental capacity, which is consistent with our findings. Such contextual requirements reduce the willingness of the older population to express their care preferences, with many even believing that they lack both the ability and the right to engage in ACP. ³⁶

Evidences revealed that outcomes reported by family caregivers as proxies, such as quality of life, ³⁷ palliative care outcomes, ³⁸ ACP, and life-sustaining treatment decisions, ³⁹ tend to approximate patients’ reports in populations with compromised mental capacity, such as older adults and those receiving palliative care.^40,41 In this study, however, the discrepant results on the association between decision-making self-efficacy and ACP engagement in the patient and family-reported groups imply a gap between close caregivers’ and patients’ perceptions of how patients themselves engage in ACP. This discrepancy may be attributed to the complex and uncertain nature of future care discussions and the difficulty of expressing preferences through the process of functional decline and within the subtle stress of cultural norms in the patient-reported group.^31,33 In contrast, in the proxy-reported group, close caregivers may consider that they generally understand what patients prefer during the long-term care experience and achieve the relational autonomy of patients in a collectivism context. ³ Therefore, it is imperative to include older adults in ACP discussion as early as possible in case they lose capacity before having their voices heard. ⁴

Conclusions

Higher self-efficacy in decision making is associated with higher ACP engagement among older adults in home care settings in Taiwan. Participants with higher self-efficacy may have started thinking about ACP, but many had not taken action. ACP engagement varies across different dimensions, with participants more likely to appoint medical surrogates than decide on and discuss their own opinions. Strategies to enhance decisional self-efficacy and timely ACP discussions in home settings in the Chinese culture are needed. Further analyses of the longitudinal changes in the association between decision-making self-efficacy and ACP engagement are warranted.