Our study demonstrated several key findings: (1) According to the advance directive, the most common life wish among the DT-LVAD patients was to “spend time with loved ones,” followed by “independence in daily life.” Notably, more than 50% of patients preferred to receive end-of-life care at home. (2) In terms of end-of-life care preferences, over 30% of patients desired to receive active treatments, such as continuation of LVAD therapy, mechanical ventilation, and hemodialysis, whereas the proportion of patients opting against such interventions increased over time. (3) There may be differences in end-of-life care preferences between patients remaining on DT-LVAD and those switched from DT to BTT.

Clinical implications and future directions of advance directives for DT-LVAD in Japan

This is the first study to examine the current state of advance directives for DT-LVAD in Japan, focusing on patients’ preferences and how their end-of-life care wishes evolve over time.

The constantly progressive nature of heart failure, characterized by recurrent acute exacerbations, may inevitably promote ACP, which includes shared decision-making among patients, families, and healthcare professionals [6]. This process is further reinforced by multidisciplinary involvement, potentially enhancing satisfaction with end-of-life care for the patients and their families [7, 8]. One key advantage of standardization for advance directive is its ability to promote clear and consistent communication of patients’ wishes [1].

However, the experience with end-of-life care in DT-LVAD patients in Japan remains relatively limited, and the actual clinical impact of advance directive remains unknown. Notably, one patient in this cohort died during follow-up and was able to spend his final days at home in accordance with the preferences outlined in his advance directive. This case illustrates the potential utility of advance directives in aligning end-of-life care with patient values. While the current standardized format is clear and easy to use, it may not fully capture the depth of each patient’s values. A more comprehensive assessment—including factors, such as what brings them joy, what makes life meaningful, and their primary concerns—could further enhance the ACP process. Future revisions to the advance directive framework should consider the integration of these elements to better reflect individual patient priorities.

Palliative care and end-of-life decision-making in DT-LVAD and BTT-LVAD patients

End-of-life care preferences appear to differ between patients remaining on DT-LVAD and those transitioned to BTT, with DT-LVAD patients more frequently favoring aggressive treatment even at the terminal stage.

The reasons for these differences remain unclear but may be associated with clinical and psychological factors such as pre-implant status, ambiguity around transplant eligibility in “bridge to candidacy” cases, and differences in therapeutic goals between DT and BTT strategies [9, 10]. Notably, in our cohort, patients who were ultimately designated as BTT had a higher incidence of intensive pre-implantation interventions such as temporary mechanical circulatory support. Although these variables were not the direct focus of our interviews, such interventions may contribute to heightened psychological vulnerability, which could in turn shape patients’ subsequent attitudes and preferences regarding end-of-life care.

Although this study was not designed to explore causality, our findings highlight the need to assess end-of-life preferences separately for DT-LVAD and BTT-LVAD patients. Future research with larger cohorts and longitudinal evaluations of clinical trajectories, psychosocial factors, and evolving treatment goals are warranted to better elucidate the underlying mechanisms and inform tailored approaches to ACP in these patient groups.

Direction and needs for end-of-life care in DT-LVAD in Japan

Despite the fact that more than half of DT-LVAD patients in clinical practice wish to spend time with their loved ones and receive end-of-life care at home, a supportive social infrastructure for adequate LVAD management remains lacking [11]. To enhance end-of-life care for these patients, it will be necessary to further refine heart failure teams at each facility and implement various initiatives, such as training programs for LVAD supporters, awareness campaigns for emergency teams and local residents, expansion of shared care networks between VAD implantation centers and management facilities, and educational efforts to strengthen community-based care.

This observational study reveals a noteworthy shift in patient preferences, with an increasing number of DT-LVAD patients in Japan who do not wish to continue LVAD support as they approach the end of life. As a result, the need for comprehensive discussions on LVAD deactivation is expected to increase, making it crucial to develop clear decision-making frameworks for end-of-life care in DT-LVAD patients [1]. Considering the complexity of LVAD deactivation, careful decision-making must take place within a highly intricate ethical and moral framework, requiring multidisciplinary evaluation and judgment that align with each patient’s values and preferences [12].

Limitations

This study has several limitations. First, as a proof-of-concept study, the sample size was small and the follow-up duration was relatively short. However, given the anticipated increase in the number of DT-LVAD patients, understanding their end-of-life medical needs in advance is crucial. Second, further investigation is warranted to determine whether the implementation of advance directives can effectively improve patients’ quality of life. Third, the impact of post-LVAD hospitalization events on advance directives remains unclear. In this study, few patients were hospitalized after LVAD implantation. Further analysis is necessary as more cases accumulate. Fourth, the generalizability of this descriptive study is limited by potential population representativeness. However, our facility carries out approximately 20% of all DT-LVAD implantations in Japan, which strengthens the relevance of our findings [2]. Fifth, our study did not include a cross-cultural comparison of end-of-life care preferences in LVAD patients. While cultural context plays a significant role in shaping such decisions, comparative data across countries remain limited. Future multinational studies using standardized tools are warranted to better understand cultural influences in this domain.