Since death is inevitable, end-of-life (EOL) planning will ultimately affect most of us in one way or another, be it as a patient, as a loved one or in some other capacity. EOL decisions are frequently among the most difficult decisions that patients and/or their loved ones will ever have to take, as they often represents questions of life and death and may have severe consequences for the quality of life of the dying person. What is more, dying individuals are often not capable of making their own EOL care decisions anymore, but may have to resort to advance care planning or rely on other persons such as family members or clinicians to decide on the appropriate course of action regarding their EOL care. EOL and death are thereby much more than just medical events. EOL has important psychological, spiritual, cultural and social aspects, which significantly influence the quality of EOL experience of patients and loved ones.
This premise is also key to the World Health Organization’s (WHO) Healthy Aging Framework. By focusing on individuals’ own goals and wellbeing at any life stage, it clearly highlights opportunities for “healthy aging” even in the face of death. Our research aims at studying key aspects of healthy aging at the EOL in Switzerland. Using new data from the Swiss version of the Survey of Health, Ageing and Retirement in Europe (SHARE), we aim to deepen our understanding of older persons’ EOL preferences, care experiences, communication, health literacy and knowledge and current EOL planning. We will also assess the interplay between all of these EOL domains along with their socio-demographic and regional/cultural patterning. Specifically, analyzing nationally representative data of older adults in Switzerland, we aim to
- Assess the levels and socio-demographic and regional/cultural patterning of EOL outcomes including EOL preferences, communication, knowledge, and planning, and explore the complex interplay between EOL preferences, communication, knowledge and its associations with EOL planning behaviors and outcomes;
- Explore the structure of EOL preferences and identify domains that are central to Swiss seniors’ perceptions of a “health ageing at the EOL” and a “good death”;
- Assess the prevalence and quality of EOL communication among older couples;
- Track in-person changes in key outcomes such as EOL preferences, EOL communication and use of EOL planning tools such as advance directives over time and conduct longitudinal analyses on the determinants of these key EOL outcomes;
- Validate a new survey instrument to measure EOL health literacy and explore the role of EOL health literacy for individual differences and socio-demographic inequalities in EOL preferences, communication, knowledge and behaviors.
Besides improving our understanding of older adults’ EOL experiences, preferences, communication, health literacy, knowledge, and planning behaviors as well as their interplay and determinants, our research will also aid the development of more person-centered and family-oriented EOL planning tools, care and health policy in Switzerland.
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