Journal Article

Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?

Weber, Christian, Lindblad, Anna, Kuźma-Kozakiewicz, Magdalena, Andersen, Peter M., Ludolph, Albert C., Pasierski, Tomasz, Ciecwierska, Katarzyna, Badura-Lotter, Gisela, Fijalkowska, Barbara, Lynöe, Niels, Lulé, Dorothée

2017

Overview

Background Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient’s choices will be addressed in the current debate. Main text In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying. Conclusion According to the presented data, regulations of terminating life-sustaining treatments and the framework of “informed consent” are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Advance directive / Advance directives / Advance Directives - legislation & jurisprudence / Amyotrophic lateral sclerosis / Amyotrophic lateral sclerosis (ALS) / Amyotrophic Lateral Sclerosis - complications / Amyotrophic Lateral Sclerosis - psychology / Assisted suicide / Clinical practice guidelines / Communication / Consent / Debate / Decision Making / Enteral nutrition / Ethical aspects / Ethics / Existentialism - psychology / Germany / Humans / Laws, regulations and rules / Medicine / Medicine & Public Health / Nutrition / organization and policy / Ostomy / Pain Medicine / Palliative care / Palliative Medicine / Patients / Physicians / Planning / Poland / Quality of Life Research / Shared decision making / Sweden / Terminal care / Terminal Care - legislation & jurisprudence / Terminal Care - methods / Therapeutic treatment / vance directive / Ventilation / Withholding Treatment - legislation & jurisprudence