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

BMC Palliative Care

Debate

Niels Lynöe¹  Anna Lindblad¹  Dorothée Lulé²  Tomasz Pasierski²  Albert C. Ludolph³  Katarzyna Ciecwierska⁴  Magdalena Kuźma-Kozakiewicz⁴  Peter M. Andersen⁵  Barbara Fijalkowska⁶  Gisela Badura-Lotter⁷  Christian Weber⁷ 

[1] Department of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm, Tomtebodavägen 18, 171 77, Solna, Sweden;Department of Medical Ethics und Palliative Medicine, Warszawski Uniwersytet Medyczny, Medical University of Warsaw, ul. Żwirki i Wigury 61, 02-091, Warsaw, Poland;Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany;Department of Neurology, Warszawski Uniwersytet Medyczny, Medical University of Warsaw, ul. Żwirki i Wigury 61, 02-091, Warsaw, Poland;Department of Pharmacology and Clinical Neuroscience, Umeå University, -90187, Umeå, SE, Sweden;Institute Józefa Piłsudskiego Warszawie, University of Warsaw, Marymoncka 34, 00-968, Warsaw, Poland;Institute of the History, Philosophy and Ethics of Medicine, University of Ulm, Parkstraße 11, 89073, Ulm, Germany;

关键词: Amyotrophic lateral sclerosis (ALS);    Shared decision-making;    Therapeutic treatment;    Palliative care;    Advance directive;    Germany;    Poland;    Sweden;   

DOI  :  10.1186/s12904-017-0252-6

 received in 2017-06-22, accepted in 2017-11-22,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundHealthcare 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 textIn 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.ConclusionAccording 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.

【 授权许可】

CC BY   
© The Author(s). 2018