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International audience

International audience

The steady increase in human life expectancy has been accompanied by a growing prevalence of patients with chronic diseases and multiple medical conditions, and the number of people in need of Palliative Care in Switzerland is expected to continue rising. Few people will die from a sudden death, whereas the majority will face an extended dying process, which will lead to a significant need for formal (e.g. hospital, retirement home) and informal care (e.g. family) throughout the course of a patient’s illness. At the same time, autonomy has emerged as a crucial principle in our modern societies. It plays a significant role in the many domains of our lives in which autonomous decision-making is promoted, and autonomy is particularly relevant for elderly patients. Therefore, different approaches on how to improve patients’ quality of life and promote their autonomy in clinical settings are increasingly important to discuss. The purpose of this PhD thesis is to integrate empirical and normative analyses using a qualitative and quantitative approach in order to promote respect of elderly patients’ autonomy. This PhD thesis consists of seven chapters (background, journal articles, and discussion). The background chapter (Chapter 1) introduces chronic diseases, demographic shift, clinical trials, autonomy, and Palliative Care. Chapter 1 also discusses the research objectives and the methodological approach. Each of the chapters 2-6 consists of a deep dive into one journal article. Chapter 2 analyses patients’ views regarding potential participation in clinical trials of synthetic biology. Our results indicate that information should be communicated with great accuracy and transparency to allay irrational fears of patients and minimize the risk that researchers present facts too optimistically in an effort to persuade patients to participate in the trials. Patients must be adequately informed in order to be able to autonomously decide whether or not to participate. Chapter 3 explores patients’ thoughts about the idea of participating in research ethics committees. If the patients were allowed to participate in the decision-making process, their autonomy would be more respected. Analysis of the interviews revealed a patients’ preference towards involvement in research ethics committees. The main motivation for the interviewed patients to participate was the improvement of therapeutic options in the future. Our study adds important knowledge about the idea of patients becoming research ethics committee members by exploring their perceptions of the prospective role. Chapter 4 focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. Three concepts of hope emerged from the interviews: hope as certainty, hope as reflective uncertainty, and hope as self-therapy. Health professionals ought to be more aware of the three concepts of hope and their great potential as a coping strategy for patients. Hope seems to be genuinely beneficent for patients’ well-being in a therapeutic and in a research context. Chapter 5 analyses patients’ medical records to determine what is reported about burden and overburden and who seems to be mostly affected. Daily life situations reveal that the concept of autonomy is challenged when the two parties (e.g. patients and their families) have different interests, resources, and needs. Patients often felt burdened by their disease, financial problems, situation at home, and family members’ reactions to their disease. Families felt burdened by issues related to patients’ medical condition, providing home care, or financial and social aspects. Chapter 6 discusses different factors determining the application of advance care planning and advance directives. By enabling patients to determine their medical treatments in advance and make their preferences known, advance care planning promotes respect for patients’ autonomy. For most patients, a discussion about advance directives, values, and wishes was documented in the medical records. Of those patients, almost two-thirds engaged in advance care planning. Knowing patients’ preferences in advance is needed to base end-of-life decisions on the patients’ values and wishes. Chapter 7 provides a general discussion of the findings derived from the journal articles. More precisely, the discussion coalesces the empirical findings and discusses their ethical significance. Afterwards, limitations and implications for further research are discussed.