Respect for Patient Self-Determination: Ambiguities, Barriers, and Possibilities

The principle of patient self-determination is central to contemporary medical ethics. However, many uncertainties remain regarding its implementation in healthcare. This thesis explores, from an ethical perspective, situations in nephrology care that reveal barriers to patient self-determination or where the requirements of the principle are unclear. The thesis includes three published articles and one manuscript. Paper I examines the ethics of delaying (temporizing) communication with patients about decisions that need to be made. Temporizing may result in patients losing decision-making capacity before the decision is presented to them, or circumstances may change to such an extent that the decision is essentially no longer the same. This calls for caution, as it risks violating patient self-determination. Paper II analyzes the ethics of healthcare professionals withholding information from patients regarding healthcare priorities or similar considerations - relevant to which treatments are offered or recommended. Suggesting that an egalitarian moral perspective should be adopted calls for transparency with patients regarding e.g. healthcare prioritization. This perspective shifts the burden of proof from determining what information should be included to determining what information could be excluded without compromising moral values. Paper III explores the experiences and views of Swedish
nephrologists on informing and preparing patients for future decisions regarding treatment options for kidney failure. Several conflicting goals in this process are identified, as well as important barriers to, and strategies for, achieving a common understanding of the situation and the available options. The nephrologists expressed a tension between enabling patients to make their own decisions and make decisions that align with what they, as nephrologists, identify as the best for the patient. They also reported adjusting the timing and framing of the information based on their perception of the patient’s needs. Paper IV explores the ethical challenges of respecting a competent patient’s wish to not receive information when approaching the end of life. Ethical, practical, and epistemic challenges are identified through the lens of a hypothetical clinical scenario. In summary, this thesis highlights the challenges of respecting patient self-determination, related to temporizing, withholding information (either at the healthcare professional’s initiative or at the patient’s request), and framing. Failing to address these issues could result in patients’ self-determination not being adequately honored.