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BMC Palliative Care
Published in: BMC Palliative Care 1/2017

Open Access 01-12-2017 | Debate

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

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

Published in: BMC Palliative Care | Issue 1/2017

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Abstract

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.
Literature
1.
Beauchamp TL, Childress JF. Principles of biomedical ethics. 7th ed. New York/Oxford: Oxford University Press; 2013. p. 101–49.
2.
Simmons Z. Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. Neurologist. 2005;11(5):257–70.CrossRefPubMed
3.
4.
Lulé D, Nonnenmacher S, Sorg S, Heimrath J, Hautzinger M, Meyer T, Kübler A, Birbaumer N, Ludolph AC. Live and let die: existential decision processes in a fatal disease. J Neurol. 2014;261:518–25.CrossRefPubMed
5.
Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat PF, Silani V, Tomik B, Wasner M, Weber M. (the EFNS task force on diagnosis and Management of Amyotrophic Lateral Sclerosis). EFNS guidelines on the clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.CrossRefPubMed
6.
Flöel A, Lohmann H, Knecht S. Neuropsychologische Störungen bei amyotropher Lateralsklerose. Nervenarzt. 2002;73:1144–52.CrossRefPubMed
7.
Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015;14(4):435–42.CrossRefPubMed
8.
Möller T. Die medizinische Indikation lebenserhaltender Maßnahmen. Baden-Baden: Nomos; 2010. p. 17–8.CrossRef
9.
Staniewicz-Zalewska B. Zgoda na udzielenie świadczenia zdrowotnego w świetle unormowań wynikających z przepisów ustawy o zawodach lekarza i lekarza dentysty oraz ustawy o zakładach opieki zdrowotnej. Rozważania wstępne Forum Medycyny Rodzinnej. 2007;1(2):190–3.
10.
11.
Sandman L. Palliative Care in Sweden. In: ten Have H, Janssens R, editors. Palliative Care in Europe: concepts and policies. Amsterdam: IOS Press; 2001. p. 69–84.
12.
Buchardi N, Rauprich O, Vollmann J. Patientenselbstbestimmung und Patientenverfügungen aus der Sicht von Patienten mit amyotropher Lateralsklerose: Eine qualitativ-empirische Studie. Ethik in der Medizin. 2004;16(7):7–21.CrossRef
13.
14.
15.
Taupitz J. Patient’s autonomy according to German law. In: Negri S, Taupitz J, Salkic A, Zwick A, editors. Advance care decision-making in Germany and Italy: a comparative, European and international law perspective. Berlin/Heidelberg: Springer; 2013. p. 111–29.CrossRef
16.
Syska M. Medyczne oświadczenia pro futuro na tle prawnoporównawczym. Warsaw: LEX; 2013.
17.
18.
19.
Héritier Barras AC, Adler D, Ferfoglia RI, Ricou B, Gasche Y, Leuchter I, Hurst S, Escher M, Pollak P, Janssens JP. Is tracheotomy still an option in amyotrophic lateral sclerosis: reflections of a multidisciplinary workgroup. Swiss Med Wkly. 2013;143:w13830.PubMed
20.
Tagami M, Kimura F, Nakajima H, Ishida S, Fujiwara S, Doi Y, Hosokawa T, Yamane K, Unoda K, Hirose T, Tani H, Ota S, Ito T, Sugino M, Shinoda K, Hanafusa T. Tracheostomy and invasive ventilation in Japanese ALS patients: decision-making and survival analysis: 1990-2010. J Neurol Sci. 2014;344(1–2):158–64.CrossRefPubMed
21.
Rousseau MC, Pietra S, Blaya J, Catala A. Quality of life of ALS and LIS patients with and without invasive mechanical ventilation. J Neurol. 2011;258:1801–4.CrossRefPubMed
22.
Alt-Epping B, Nauck F. Der Wunsch des Patienten – ein eigenständiger normativer Faktor in der klinischen Therapieentscheidung? Ethik in der Medizin. 2012;24:19–28.CrossRef
23.
Lulé D, Ehlich B, Lang D, Sorg S, Heimrath J, Kübler A, Birbaumber N, Ludolph AC. Quality of life in fatal disease: the flawed Judgement of the social environment. J Neurol. 2013;260:2836–43.CrossRefPubMed
24.
Bach JR. Threats to “informed” advance directives for the severely physically challenged? Arch Phys Med Rehabil. 2003;84(Suppl 2):S23–8.CrossRefPubMed
25.
Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44(5):681–92.CrossRefPubMed
26.
Godolphin W. Shared decision-making. Healthc Q 2009;12Spec: eC186-90.
27.
Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, Cording E, Tomson D, Dodd C, Rollnick S, Edwards A, Barry M. Shared decision-making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–7.CrossRefPubMedPubMedCentral
28.
Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16):2221–6.CrossRefPubMed
29.
Lipp V. Die medizinische Indikation aus medizinrechtlicher Sicht. In: Dörries A, Lipp V, editors. Medizinische Indikation: Ärztliche, ethische und rechtliche Perspektiven. Stuttgart: Kohlhammer; 2015. p. 36–46.
30.
Böhm S, Aho-Özhan HEA, Keller J, Dorst J, Uttner I, Ludolph AC, Lulé D. Medical decisions are independent of cognitive impairment in amyotrophic lateral sclerosis. Neurology. 2016;87(16):1737–8.CrossRefPubMed
31.
Neitzke G. Medizinische und ärztliche Indikation – zum Prozess der Indikationsstellung. In: Dörries A, Lipp V, editors. Medizinische Indikation: Ärztliche, ethische und rechtliche Perspektiven. Stuttgart: Kohlhammer; 2015. p. 83–93.
32.
Marckmann G. Wirksamkeit und Nutzen als alternative Konzepte zur medizinischen Indikation. In: Dörries A, Lipp V, editors. Medizinische Indikation: Ärztliche, ethische und rechtliche Perspektiven. Stuttgart: Kohlhammer; 2015. p. 113–24.
33.
Winkler EC. Ist ein Therapieverzicht gegen den Willen des Patienten ethisch begründbar? Ethik in der Medizin. 2010;22:89–102.CrossRef
34.
35.
Windisch W, Brambring J, Budweiser S, Dellweg D, Geiseler J, Gerhard F, Köhnlein T, Mellies U, Schönhofer B, Schucher B, Siemon K, Walterspacher S, Winterholler M, Sitter H. Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz: S2-Leitlinie herausgegeben von der Deutschen Gesellschaft für Pneumologie und Beatmungsmedizin e.V. Pneumologie. 2010;64:207–40.CrossRefPubMed
36.
Bundesärztekammer. Grundsätze der Bundesärztekammer zur ärztlichen Sterbebegleitung. Deutsches Ärzteblatt. 2011;108(7):A 346–8.
37.
Erbguth FJ, Erbguth L. Therapieentscheidungen am Ende des Lebens. Aktuelle Neurologie. 2016;43:102–12.CrossRef
38.
Winkler EC, Hiddemann W, Marckmann G. Comment: ethical assessment of life-prolonging treatment. Lancet Oncol. 2011;12:720–2.CrossRefPubMed
39.
Winkler EC, Borasio GD, Jacobs P, Weber J, Jox R. Münchner Leitlinie zu Entscheidungen am Lebensende. Ethik in der Medizin. 2012;24:221–34.CrossRef
40.
Winkler EC, Hiddemann W, Marckmann G. Evaluating a patient’s request for life-prolonging treatment: an ethical framework. J Med Ethics. 2012;38:647–51.CrossRefPubMedPubMedCentral
41.
42.
43.
44.
45.
46.
47.
48.
49.
50.
Ankrom M, Zelesnick L, Barofsky I, Georas S, Finucane TE, Greenough WB III. Elective Discotinuation of life-sustaining mechanical ventilation on a chronic ventilator unit. J Am Geriatr Soc. 2001;49(11):1549–54.CrossRefPubMed
51.
Borasio GD, Voltz R. Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis. J Neurol. 1998;245(11):717–22.CrossRefPubMed
52.
Rubenfeld GD. Principles and practice of withdrawing life-sustaining treatments. Crit Care Clin. 2004;20(3):435–51.CrossRefPubMed
53.
Meyer T, Dullinger JS, Münch C, Keil JP, Hempel E, Rousseau S, Borisow N, Linke P. Elektive Termination der Beatmungstherapie bei der amyotrophen Lateralsklerose. Nervenarzt. 2008;79(6):684–90.CrossRefPubMed
54.
55.
Zwick A. The German law on euthanasia: the legal basics and the actual debate. In: Negri S, Taupitz J, Salkic A, Zwick A, editors. Advance care decision-making in Germany and Italy: a comparative, European and international law perspective. Berlin/Heidelberg: Springer; 2013. p. 151–86.CrossRef
56.
57.
Beckmann R. Patientenverfügungen: Entscheidungswege nach der gesetzlichen Regelung. Medizinrecht. 2009;27:582–6.CrossRef
58.
Kutzer K. Ärztliche Pflicht zur Lebenserhaltung unter besonderer Berücksichtigung des neuen Patientenverfügungsgesetzes. Medizinrecht. 2010;28:531–3.CrossRef
59.
Kratz T, Vogel R, Eberling J, Tröster M. Strafrechtliche Risiken der Sterbehilfe bei Demenz: Orientierungssicherheit durch die jüngste Rechtssprechung des Bundesgerichtshofs? Fortschritte der Neurologie Psychiatrie. 2013;81:679–88.CrossRefPubMed
60.
Jox R, Heßler HJ, Borasio GD. Entscheidungen am Lebensende. Vorsorgevollmacht und Patientenverfügung Nervenarzt. 2008;79:729–39.CrossRef
61.
Chańska W. Rezygnacja z leczenia podtrzymującego życie. In: Różyńska J, Chańska W, editors. Bioetyka. Warsawa: Wolters Kluwer; 2013. p. 251–66.
62.
63.
64.
65.
66.
Tomczyk M, Sopata MJ, Viallard ML. Sedacja paliatywna u dorosłych – wybrane aspekty etyczne. Medycyna Paliatywna. 2014;6(2):76–80.
67.
68.
Leijonhufvud M, Lynöe N. Sedation therapy which shortens life--homicide or adequate treatment? Lakartidningen. 2010;107(45):2772–3.PubMed
Metadata
Title
Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?
Authors
Christian Weber
Barbara Fijalkowska
Katarzyna Ciecwierska
Anna Lindblad
Gisela Badura-Lotter
Peter M. Andersen
Magdalena Kuźma-Kozakiewicz
Albert C. Ludolph
Dorothée Lulé
Tomasz Pasierski
Niels Lynöe
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2017
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-017-0252-6

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