Medicine, Health Care and Philosophy

, Volume 18, Issue 3, pp 329–340

“What the patient wants…”: Lay attitudes towards end-of-life decisions in Germany and Israel

  • Julia Inthorn
  • Silke Schicktanz
  • Nitzan Rimon-Zarfaty
  • Aviad Raz
Scientific Contribution


National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople (religious, secular, affected, and non-affected) were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture.


End-of-life care Euthanasia Lay perspectives Responsibility Israel Germany Advance directive Decision-making process 


  1. Abma, Tineke, Anne Bruijn, Tinie Kardol, Jos Schols, and Guy Widdershoven. 2012. Responsibilities in elderly care: Mr Powell’s Narrative of duty and relations. Bioethics 26(1): 22–31.CrossRefGoogle Scholar
  2. Ariès, P. 1981. The hour of our death. New York: Alfred Knopf.Google Scholar
  3. Barilan, Michael Y. 2003. The Israeli bioethical discourse and the Steinberg report regarding a proposed bill of rights of the terminally Ill. Ethik in der Medizin 15(1): 59–62.Google Scholar
  4. Barilan, Michael Y. 2012. Human dignity, human rights, and responsibility. The new language of global bioethics and biolaw. Cambridge, MS: M.I.T. Press.Google Scholar
  5. Beck, Sabine, Andreas van de Loo, and Stella Reiter-Theil. 2008. A “little bit illegal”: Withholding and withdrawing of mechanical ventilation in the eyes of German intensive care physicians. Medicine, Health Care and Philosophy 11(1): 7–16.Google Scholar
  6. Birenbaum-Carmeli, Daphna. 2010. Genetic relatedness and family formation in Israel: Lay perceptions in the light of State policy. New Genetics and Society 29(1): 73–85.CrossRefGoogle Scholar
  7. Borasio, GianDomenico, Birgitta Weltermann, Raymond Voltz, and Heinz Reichmann. 2004. Einstellung zur Patientenbetreuung in der letzten Lebensphase: Eine Umfrage bei neurologischen Chefärzten. Nervenarzt 75(12): 1187–1193.CrossRefGoogle Scholar
  8. Caplan, A. 2013. Brain test results don‘t mean Ariel Sharon will ‘come back,’ bioethicist says. Accessed 6 Dec 2013.
  9. Denzin, N.K., and Y. Lincoln. 1994. Handbook of qualitative research. Thousand Oaks: Sage.Google Scholar
  10. Emanuel, Linda. 2008. Advance directives. Annual Review of Medicine 59: 187–198.CrossRefGoogle Scholar
  11. Ethikrat, Nationaler. 2006. Selbstbestimmung und Fürsorge am Lebensende. Berlin: Stellungnahme.Google Scholar
  12. Fagerlin, Angela, and CarlE Schneider. 2004. Enough: the failure of the living will. Hastings Center Report 34(2): 30–42.CrossRefGoogle Scholar
  13. Frieß, M. 2008. Komm süßer Tod. Europa auf dem Weg zur Euthanasie? Zur theologischen Akzeptanz von assistiertem Suizid und aktiver Sterbehilfe. Stuttgart: Kohlhammer.Google Scholar
  14. Gedge, E., M. Giacomini, and D. Cook. 2007. Withholding and withdrawing life support in critical care settings: ethical issues concerning consent. Journal of Medical Ethics 33: 215–218.CrossRefGoogle Scholar
  15. Gysels, Marjolein, Natalie Evans, Arantza Meñaca, Erin Andrew, Franco Toscani, H. Sylvia Finetti, Roeline Pasman, Irene Higginson, Richard Harding, and Robert Pool. 2012. Culture and end of life care: A scoping exercise in seven European countries. PLoS ONE 7(4): e34188.CrossRefGoogle Scholar
  16. Hanson, JaniceL. 2008. Shared decision making: Have we missed the obvious? Archives of Internal Medicine 168(13): 1368–1370.CrossRefGoogle Scholar
  17. Härter, Martin, Hardy Müller, Jörg Dirmaier, Norbert Donner-Banzhoff, Christiane Bieber, and Wolfgang Eich. 2011. Patient participation and shared decision-making in Germany—History, agents and current transfer to practice. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 105(4): 263–270.CrossRefGoogle Scholar
  18. Hashiloni-Dolev, Y., and S. Shkedi. 2007. On new reproductive technologies and family ethics: Pre-implantation genetic diagnosis for sibling donor in Israel and Germany. Social Science and Medicine 65(10): 2081–2092.CrossRefGoogle Scholar
  19. Horn, Ruth. 2013. Euthanasia and end-of-life practices in France and Germany. A comparative study. Med Health Care and Philos 16(2):197–209.Google Scholar
  20. In der Schmitten, J. and G. Marckmann. 2011. Gesundheitliche Vorausplanung (Advance Care Planning). Was können wir aus internationalen Erfahrungen für die Umsetzung, von Patientenverfügungen lernen? In Patientenverfügung: Das Neue Gesetz in der Praxis, eds. G.D. Borasio, H.J. Heßler, R.J. Jox and C. Meier, 96–114. Stuttgart: Kohlhammer.Google Scholar
  21. Inbari, P. and Y. Gil. 2013. Scharons langer Weg in den Tod. Accessed 6 Dec 2013.
  22. Jacobi, T., A.T. May, R. Kielstein, and W. Bienwald. 2005. Ratgeber Patientenverfügung: Vorgedacht oder selbstverfasst?. Münster: LIT Verlag.Google Scholar
  23. Jotkowitz, AlanB, and Shimon Glick. 2009. The Israeli terminally ill patient law of 2005. Journal of Palliative Care 25(4): 284–288.Google Scholar
  24. Kleinman, A. 1999. Moral experience and ethical reflection: Can ethnography reconcile them? A quandary for ‘The New Bioethics’. Daedalus 128(4): 69–97.Google Scholar
  25. Kongregation für die Glaubenslehre. 1980. Erklärung der Kongregation für die Glaubenslehre zur Euthanasie—IURA et bona. Accessed 6 Dec 2013.
  26. Leget, Carlo, Pascal Borry, and Raymond de Vries. 2009. ‘Nobody tosses a dwarf!’ The Relation between the empirical and normative reexamined. Bioethics 23(4): 226–235.CrossRefGoogle Scholar
  27. Leichtentritt, Ronit D. and Kathryn Rettig. 1999. Meanings and attitudes. Toward end-of-life preferences in Israel. Death Studies 23(4):323–358.Google Scholar
  28. Miron-Shatz, Talya, Ofra Golan, Mayer Brezis, GilSiegaland Glen, and M. Doniger. 2011. The status of shared decision making and citizen participation in Israeli medicine. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 105(4): 271–276.CrossRefGoogle Scholar
  29. Pelleg, Gilly, and RonitD Leichtentritt. 2009. Spiritual beliefs among Israeli nurses and social workers: A comparison based on their involvement with the dying. Omega 59(3): 239–252.Google Scholar
  30. Public Committee on “The Care of Dying Patients”. 2006. The report of the public committee on the care of the dying patient. In Jewish ethics and the care of end-of-life patients. A collection of rabbinical, bioethical, philosophical, and juristic opinions, eds. P.J. Hurwitz, J. Picard and A. Steinberg, 207–214. Jersey City: KTAV Publishing House.Google Scholar
  31. Raz, Aviad, and Silke Schicktanz. 2009a. Lay perceptions of genetic testing in Germany and Israel: The interplay of national culture and individual experience. New Genetics and Society 28(4): 401–414.CrossRefGoogle Scholar
  32. Raz, Aviad, and Silke Schicktanz. 2009b. Diversity and uniformity in genetic responsibility: Moral attitudes of patients, relatives and lay people in Germany and Israel. Medicine, Health Care and Philosophy 12(4): 433–442.CrossRefGoogle Scholar
  33. Raz, Aviad, Isabella Jordan, and Silke Schicktanz. 2012. Exploring the positions of German and Israeli patient organizations in the bioethical context of end-of-life policies. Health Care Analysis 24 June 2012 [Epub ahead of print].Google Scholar
  34. Rehmann-Sutter, Christoph, Rouven Porz, and Jackie Leach-Scully. 2012. How to relate the empirical to the normative: Toward a phenomenologically informed hermeneutic approach to bioethics. Cambridge Quarterly of Healthcare Ethics 21(4): 436–447.CrossRefGoogle Scholar
  35. Schardien, S. 2007. Sterbehilfe als Herausforderung für die Kirchen. Gütersloh: Gütersloher Verlagshaus.Google Scholar
  36. Scheibler, Fülöp, Christian Janßen, and Holger Pfaff. 2003. Shared decision making: Ein Überblicksartikel über die internationale Forschungsliteratur. Soz.- Präventivmed. 48:11–24.Google Scholar
  37. Schicktanz, Silke, Mark Schweda, and Martina Franzen. 2008. ‘In a completely different light’?—The role of being affected for epistemic perspectives and moral attitudes of patients, relatives and lay people. Medicine, Health Care and Philosophy 11(1): 57–72.CrossRefGoogle Scholar
  38. Schicktanz, Silke, Aviad Raz, and Carmel Shalev. 2010a. The cultural context of end-of-life ethics: A comparison of Germany and Israel. Cambridge Quarterly of Healthcare Ethics 19(3): 381–394.CrossRefGoogle Scholar
  39. Schicktanz, Silke, Aviad Raz, and Carmel Shalev. 2010b. The cultural context of patient’s autonomy and doctor’s duty: Passive euthanasia and advance directives in Germany and Israel. Med Health Care and Philos 13(4): 363–369.CrossRefGoogle Scholar
  40. Schicktanz, Silke, Mark Schweda, and Brian Wynne. 2012. The ethics of ‘public understanding of ethics‘—Why and how bioethics expertise should include public and patients’ voices. Med Health Care and Philos 15(2): 129–139.CrossRefGoogle Scholar
  41. Searight, HRussel, and Jennifer Gafford. 2005. The cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician 71(3): 515–522.Google Scholar
  42. Shalev, Carmel. 2009. End-of-life care in Israel—The dying patient law 2005. Israel Law Review 42(2): 279–305.CrossRefGoogle Scholar
  43. Shalev, Carmel. 2010. Reclaiming the patient’s voice and spirit in dying: An insight from Israel. Bioethics 24(3): 134–144.CrossRefGoogle Scholar
  44. Shapira, Amos. 2006. Law and bioethics in Israel: Between liberal ethical values and Jewish religious norms. Journal International de Bioéthique 17(1–2): 115–123.CrossRefGoogle Scholar
  45. Simon, Joshua 2010. Ariel Sharon. Noam Braslavsky. Solo exhibition: Press release. Accessed 10 Oct 2013.
  46. Sprung, CharlesL, Paulo Maia, Hans-Henrik Bulow, Bara Ricou, Apostolos Armaganidis, Mario Baras, Elisabet Wennberg, Konrad Reinhart, SimonL Cohen, DietmarR Fries, George Nakos, and LambertiusG Thijs. 2007. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Medicine 33(10): 1732–1739.CrossRefGoogle Scholar
  47. Van der Heide, Agnes, Luc Deliens, Karin Faisst, Tore Nilstun, Michael Norup, Eugenio Paci, Gerrit van der Wal, and Paul J van der Maas, on behalf of the EURELD consortium. 2003. End-of-life decision-making in six European countries: descriptive study. The Lancet 362(9381):345–350.Google Scholar
  48. Van Oorschot, Birgitt, Volker Lipp, Andrea Tietze, Nicole Nickel, and Alfred Simon. 2005. Einstellung zur Sterbehilfe und zu Patientenverfügungen. Ergebnisse einer Befragung von 727 Ärzten. Deutsche Medizinische Wochenschrift 130(6):261–265.Google Scholar
  49. Wenger, NeilS, and Sara Carmel. 2004. Physicians’ religiosity and end-of-life care attitudes and behaviors. The Mount Sinai Journal of Medicine 71(5): 335–343.Google Scholar
  50. Whittemore, Robin, Susan K. Chase, and CarolLynn Mandle. 2001. Validity in qualitative research. Qualitative Health Research 11: 522–537.CrossRefGoogle Scholar
  51. Wiesing, Urban, RalfJ Jox, HansJoachim Hessler, and GianDomenico Borasio. 2010. A new law on advance directives in Germany. Journal of Medical Ethics 36(12): 779–783.CrossRefGoogle Scholar
  52. Wöhlke, Sabine. 2013. The morality of giving and receiving living kidneys: Empirical findings on opinions of affected patients. In Public engagement in organ donation and transplantation (from the ELPAT Public Issues Working Group), ed. G. Randhawa, and S. Schicktanz, 144–153. Lengerich: Pabst Science Publishers.Google Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  • Julia Inthorn
    • 1
  • Silke Schicktanz
    • 1
  • Nitzan Rimon-Zarfaty
    • 2
  • Aviad Raz
    • 2
  1. 1.Department of Medical Ethics and History of MedicineUniversity Medical Center GoettingenGoettingenGermany
  2. 2.Department of Sociology and AnthropologyBen-Gurion UniversityBe’er-ShevaIsrael

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