Abstract
Uncertainty is a basic constant of medicine and health-care professionals’ decision-making. However, it is particularly apparent in the complex, ambiguous and unpredictable situations that often arise in end-of-life care. Advance directives (ADs) and continuous deep sedation (CDS) are both tools used at different times during the end-of-life period to provide greater certainty to the dying. Both aim at planning for uncertainty in decision-making and reducing uncertainty about the hour and manner of death.
This paper provides an international comparison of guidelines and practical challenges taken from France, Germany and the United Kingdom and explores when, where and how uncertainty occurs regarding CDS and ADs. These findings are discussed in the light of professional medical ethics. The CDS and ADs are used as lenses to elaborate how health-care professionals, particularly physicians, deal with (un)certainty at the end of life from both practical and ethical perspectives.
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Notes
- 1.
Law 2016–87 of 2 February creating new rights for patients and persons at the end of their lives; Decree No. 2016-1066 of 3 August 2016 amending the medical code of ethics and relating to collegial procedures and the use of deep and continuous sedation until death provided for by Law No. 2016-87 of 2 February 2016.
- 2.
Law No. 2005-370 of 22 April 2005 on the rights of patients at the EoL.
- 3.
Law No. 2016-87 of 2 February 2016 creating new rights for patients and persons at the end of their lives: Art. L. 1110-5-3-3.
- 4.
Examples are: “Evaluation of the refractory suffering”, “Evaluation of the vital prognosis undertaken in the short term” and “Medication implementation for sedation”. http://www.sfap.org/rubrique/les-recommandations-sur-la-sedation. Accessed 27 September 2019.
- 5.
An S3 guideline represents the highest quality level of the methodology of development a medical guideline can have in Germany. Such a guideline has been developed systematically, containing different analyses and an assessment of the clinical relevance of thematically relevant scientific studies (AWMF 2004).
- 6.
For background information to the political debate, see https://www.bundestag.de/dokumente/textarchiv/2015/kw45_de_sterbebegleitung-392450 in German. Accessed 27 September 2019.
- 7.
For this recent development, consult https://www.lto.de/recht/hintergruende/h/bverfg-urteil-sterbehilfe-217-stgb-kommentar-autonomie-gesetzgebung-aerzte-sterbehilfeorganisationen/ in German. Accessed 08 March 2020.
The Constitutional Court’s decision does not regulate the promotion of suicide, but it forces legislature to (re-)define the boundaries of legally permitted physician assisted suicide as well as to discuss legality of euthanasia. It is yet unclear how this decision will change law, medical practice and the social stance towards EoL care.
- 8.
Mental Capacity Act 2005: http://www.legislation.gov.uk/ukpga/2005/9/contents. Accessed 28 September 2019.
- 9.
Compassion In Dying. Advanced Decisions (Living Wills). 2018: https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/. Accessed 28 September 2019; Age UK. Advance decisions, advance statements and living wills. 2019: https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs72_advance_decisions_advance_statements_and_living_wills_fcs.pdf. Accessed 28 September 2019; BMA. Advance Decisions. 2018: https://www.bma.org.uk/advice/employment/ethics/consent/consent-tool-kit/9-advance-decisions. Accessed 28 September 2019.
- 10.
For the case, see https://www.bbc.co.uk/news/uk-scotland-30192721. Accessed 29 September 2019.
- 11.
For current statistics, see https://www.coordinatemycare.co.uk/. Accessed 28 February 2021.
- 12.
Law No. 2016-87 of 2 February 2016 creating new rights for patients and persons at the end of their lives – Public health code: articles L1111-11 to L1111-12 – Public health code: articles R1111-17 to R1111-20 – Decree of 3 August 2016 on the model for ADs.
- 13.
E.g. Klinikum Stuttgart. Leitlinie zur Patientenverfügung. September 2009: https://www.klinikum-stuttgart.de/fileadmin/user_upload/leitline_patientenverfuegung.pdf. Accessed 16 September 2019.
- 14.
E.g. Umgang mit Patientenverfügungen. Arbeitshilfe der Ethik-Kommission der cusanus Trägergesellschaft Trier, 2011: https://ethikkomitee.de/downloads/arbeitshilfe-der-ctt-zum-umgang-mit-patientenv.pdf. Accessed 16 September 2019; AK Patientenverfügungen am Klinikum der Universität München, 2013. Leitlinie zur Frage der Therapiezieländerung bei schwerstkranken Patienten und zum Umgang mit Patientenverfügungen: https://ethikkomitee.de/plaintext/downloads/muenchner-leitlinie-v3-2013-kurzfassung-cd.pdf. Accessed 16 September 2019.
- 15.
Law No. 219/2017 of 22 December 2017: https://www.gazzettaufficiale.it/eli/id/2018/1/16/18G00006/sg. Accessed 28 February 2021.
- 16.
These documents can be retrieved from http://www.palliativmedizin.uk-erlangen.de/forschung/downloads/dokumentationsvorlagen-palliative-sedierung/. Accessed 27 September 2019.
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Kuhn, E., Camier-Lemoine, E., Lonergan, B., Dunger, C. (2022). An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification by Means of Continuous Deep Sedation and Advance Directives. In: Seidlein, AH., Salloch, S. (eds) Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives. Philosophy and Medicine, vol 141. Springer, Cham. https://doi.org/10.1007/978-3-030-83186-8_3
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