Enhancing Meaningful End-of-Life Care: Evidence Based Recommendations for Complex Healthcare Choices of Older Adults

End-of-life decision-making is a profoundly complex process that unfolds over time and is shaped by ethical, societal, and legal factors. Our research consists of three interconnected projects, each providing a unique lens on how older adults and their close ones experience, navigate, and make sense of these decisions. Together, these projects offer a multi-perspective, longitudinal understanding of end-of-life choice-making.

Through this research, we aim to:

1. Develop a rich and nuanced understanding of how older adults and their close ones anticipate and navigate end-of-life choices. We explore how individuals consider hypothetical future scenarios, engage in advance care planning, and experience moments of decision-making, both in advance and when faced with chronic illness or declining health.
2. Critically examine dominant ethical frameworks, such as autonomy and relationality, and explore their practical implications in decision-making.
3. Identify barriers and facilitators for meaningful interactions between patients, close ones, and HCPs. We investigate how communication dynamics, healthcare structures, and systemic constraints affect the ability of individuals to make informed and supported choices.
4. Explore choice-making in the context of euthanasia requests, particularly how (unbearable) suffering is understood, assessed, and shaped by relational, societal, and legal contexts.
5. Translate these findings into concrete recommendations for improving decision-making processes, communication, and care structures. By synthesizing insights across our projects, we aim to inform practices that better support older adults and their close ones and involved HCPs in navigating end-of-life choices.

Scientific Output & Research Contributions

These objectives are reflected in a series of scientific publications, targeting leading journals such as The Gerontologist, Age and Ageing, Social Science & Medicine, BMJ, Palliative Medicine, Patient Education and Counseling, American Journal of Bioethics and Journal of Medical Ethics. Our work includes:

• Empirical studies on the lived experience of end-of-life decision-making, both for anticipating choices and more focused on multimorbidity and decision-making complexities.
• Ethical analysis of respect for autonomy and relationality in decision-making.
• An in-depth examination of the meaning of suffering in euthanasia requests and how this is shaped by relationality.
• Development of a unique, robust methodological framework for conducting multi-perspective, longitudinal and phenomenological research in end-of-life contexts.

Ultimately, these projects will culminate in two PhD theses that integrate our findings into a comprehensive analysis of end-of-life decision-making in later life.

Specific objectives for our Brocher residency

The Brocher residency provides a unique and essential opportunity for us to move beyond academic contexts and actively translate our research into policy and practice. Our primary goal is to develop a policy paper and infographic (for which we have secured funding) that bridge the gap between scientific findings and real-world healthcare challenges, improving end-of-life care for older adults.

By synthesizing insights from our individual projects, we aim to identify overarching themes that shape end-of-life decision-making for older adults and their close ones. Building on these insights, we will formulate concrete policy recommendations that enhance decision-making practices, improve healthcare structures, and provide ethical guidance for complex issues such as euthanasia and advance care planning.

The residency’s multidisciplinary and international environment will allow us to refine these recommendations through engagement with global experts, ensuring their relevance across different healthcare systems. Ultimately, we aim to produce accessible, practice-oriented recommendations that inform policy and empower healthcare professionals to better support older adults in making complex end-of-life choices.