Skip to main content Accessibility help
×
Home

Advance Healthcare Directives: Binding or Informational Value?

  • GIANLUCA MONTANARI VERGALLO

Abstract:

Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient’s conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress.

Copyright

References

Hide All

Notes

1. See, in that regard: Rodotà, S. Tecnologie e Diritti. Bologna: Il Mulino; 1995; Beširevic, V. End-of-life care in the 21st century: Advance directives in universal rights. Bioethics 2010;24(3):105–12; Cogo, SB, Lerch, VL. Anticipated directives and living will for terminal patients: An integrative review. Revista Brasileira de Enfermagem 2015;68(3):464–74.

2. de Melo-Martín, I. Human dignity in international policy documents: A useful criterion for public policy. Bioethics 2011;25(1):3745; Horn, R, Kerasidou, A. The concept of dignity and its use in end-of-life debates in England and France. Cambridge Quarterly of Healthcare Ethics 2016;25(3):404–13.

3. Gristina, GR. A position paper on end of life shared between those who believe and those who don’t believe: A dialogue is possible. Recenti Progressi in Medicina 2015;106(11):535–7.

4. Küng, H. Morire Felici? Milano: Rizzoli; 2015.

5. Caulfield, T, Brownsword, R. Human dignity: A guide to policy making in the biotechnology era? Nature Reviews Genetics 2006;7(1):72–6.

6. Brennan, F.To die with dignity’: An update on palliative care. Internal Medicine Journal 2017;47(8):865–71; Ñamendys-Silva, SA. The Right to Live with Dignity and the Right to Die with Dignity. Journal of Palliative Medicine 2017;20(11):1186. On the topic of dignity in bioethics, see: Schulman, A. Bioethics and the question of human dignity, in Human Dignity and Bioethics: Essays Commissioned by the President’s Council on Bioethics. Washington, D.C.: The President’s Council on Bioethics; 2008, at 318; available at https://repository.library.georgetown.edu/bitstream/handle/10822/559351/human_dignity_and_bioethics.pdf?sequence=1&isAllowed=y (last accessed 23 Dec 2018).

7. Doukas, DJ, Reichel, W. Planning for uncertainty: Living wills and Other Advance Directives for you and your Family . Baltimore: Johns Hopkins University Press; 2007.

8. Horn, H. “I don’t need my patients’ opinion to withdraw treatment”: Patient preferences at the end-of-life and physician attitudes towards advance directives in England and France. Medicine, Health Care and Philosophy 2014;17(3):425–35.

9. Negri, S. The right to informed consent at the convergence of International biolaw and International human rights Law, in: Negri, S, ed. Self-Determination, Dignity and End-of-Life Care, Regulating Advance Directives in International and Comparative Perspectives. Boston: Martinus Nijhoff Publishers; 2011, at 2372.

10. Ditto, PH, Danks, JH, Smucker, WD, Bookwala, J, Coppola, KM, Dresser, RA, et al. Advance directives as acts of communication: A randomized controlled trial. Archives of Internal Medicine 2001;161(3):421–30.

11. Cosmacini, G. Testamento Biologico – Idee ed esperienze per una morte giusta. Bologna: Il Mulino; 2010.

12. Such cases have been at the heart of legal decisions of utmost significance for the evolution of the regulatory framework of advance directives, as in the widely debated Eluana Englaro case. Patti S. L’autonomia decisionale della persona alla fine della vita, in VV.AA. Testamento Biologico: Riflessione di dieci giuristi. Milano: Fondazione Umberto Veronesi; 2006, at 1–13.

13. Brostrom, L, Johansson, M, Nielsen, MK. “What the patient would have decided”: A fundamental problem with the substituted judgment standard. Medicine, Health Care and Philosophy 2007;10:265–78.

14. Catalano, JT. Treatments not specifically listed in the living will: The ethical dilemmas. Dimensions of Critical Care Nursing 1994;13(3):142–50.

15. Pizzetti, FG. Alle frontiere della vita: Il testamento biologico tra valori costituzionali e promozione della persona. Milano: Giuffré; 2008.

16. In the European background, the right to consent to any treatment is deemed to be enshrined within Convention for the Protection of Human Rights and Fundamental Freedoms, better known as the European Convention on Human Rights, which was opened for signature in Rome on 4 November 1950 by the then newly formed Council of Europe, and came into force in 1953, although such a right is explicitly mentioned within the Charter of Fundamental Rights of the European Union (Article. 1-Human Dignity and 3-Right to Personal Integrity) as well as in the 1997 Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, also known as the Oviedo Convention, wherein Articles 5 and 9 respectively state that an intervention in the health field may only be carried out after the person concerned has given free and informed consent to it (which consent may be withdrawn at any time) and, just as importantly, the previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account.

17. Ivone, I. Exploring self-determination and informed consent in advance directives in light of the Italian legal system, in Negri, S, ed. Self-Determination, Dignity and End-of-Life Care. Boston: Martinus Nijhoff Publishers; 2011, at 381410.

18. Bertolini G. Scelte sulla vita. L’esperienza di cura nei reparti di terapia intensiva. Milano: Guerini e associati; 2007.

19. Carapezza Figlia, G. Profili ricostruttivi delle dichiarazioni anticipate di trattamento. Familia 2004;18:1055–96.

20. Nawrot, O. The biogenetical revolution of the Council of Europe - Twenty years of the Convention on Human Rights and Biomedicine (Oviedo Convention). Life Sciences, Society and Policy 2018;14(1):11; Adorno, R. The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and health Law. Journal of International Biotechnology Law 2005;2:133–43; Adorno, R. La Convention d’Oviedo: Vers un droit commun européen de la bioéthique, in Azoux-Bacrie, L, ed. Bioéthique, Bioéthiques . Brussels: Bruylant; 2003, at 5993; Troncarelli, B. Primacy of the human being” and autonomy principle in the Oviedo Convention. Medicina e Morale 2017;66(6):717–33; Spagnolo, AG. La Convenzione di Oviedo: L’idea di una coscienza commune europea in bioetica. Medicina e Morale 2017;66(6):701–5.

21. The Italian Bioethics Committee, in its 2003 release titled “Dichiarazioni anticipate di trattamento” argues in favor of “the law binding doctors to take into account advance directives, openly ruling out their binding nature, but compelling doctors to elaborate on the motives for which they ultimately decided to disregard them, in writing, within the patient records.”

22. Council of Europe, Resolution 25 January 2012, Number 1859; available at http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=18064&lang=en (last accessed 23 Dec 2018): “Close in time to the decision-making situation, more precisely at the time when he or she is dying, and in an appropriate situation without exertion of pressure or mental disability.”

23. Council of Europe, Guide on the decision-making process regarding medical treatment in end-of-life situations, 2014; available at https://undirittogentile.files.wordpress.com/2014/05/guida_finevita.pdf (last accessed 23 Dec 2018).

24. Tomlinson, E, Stott, J. Assisted dying in dementia: A systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these. International Journal of Geriatric Psichiatry 2015;30(1):1020; Mullet, E, Neto, F, Pinto, C, Raich, RM, Sastre, MT, Sorum, PC. The acceptability of ending a patient’s life: A France-Portugal-Spain comparison.Death Studies 2014;38(1-5):2835; Kouwenhoven, PS, Raijmakers, NJ, van Delden, JJ, Rietjens, JA, van Tol, DG, van de Vathorst, S, et al. Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public.BMC Medical Ethics 2015;16:7; available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4350907/ (last accessed 23 Dec 2018).

25. Erbguth, F. Between patient autonomy and the ethics of care: Difficult end-of-life decision-making in intensive care. Der Anaesthesist 2012;61(6):521–8.

26. Ackermann, RJ. Care of patients at the end of life: Advance care planning. FP Essentials 2016;447:2531.

27. Winter, L. Patient values and preferences for end-of-life treatments: Are values better predictors than a living will? Journal of Palliative Medicine 2013;16(4):362–8.

28. Burlá, C, Rego, G, Nunes, R. Alzheimer, dementia and the living will: A proposal. Medicine, Health Care and Philosophy 2014;17(3):389–95.

29. See note 28, Burlá et al. 2014.

30. D’Avack, L. Scelte di fine vita, in VV.AA. Testamento biologico: Riflessione di dieci giuristi . Milano: Fondazione Umberto Veronesi; 2006, at 4787.

31. See note 15, Pizzetti 2008, at 250 ss.

32. Barrio-Cantalejo, I.M, Molina-Rui, A, Simón-Lorda, P, Cámara-Medina, C, Toral López, I, Del Mar Rodríguez Del Aguila M, et al. Advance directives and proxies’ predictions about patients’ treatment preferences. Nursing Ethics 2009;16(1):93109; Wodos, S. Respect for persons, autonomy and palliative care, in Medicine. Health, Care and Philosophy 2005;8(2):243–53.

Keywords

Related content

Powered by UNSILO

Advance Healthcare Directives: Binding or Informational Value?

  • GIANLUCA MONTANARI VERGALLO

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed.