Advanced directives in capacity-affecting diseases: the medico-legal perspective
Keywords:
shared care planning, law 219/ 2017, decision-making, informed consent, geriatrics, dementia, neurologic disorders, advanced directivesAbstract
Advanced directives (ADs) and the activation of additional instruments of legal representation in health, in various neuropsychiatric and geriatric settings, nowadays are the tools to support the entitled subject decision-making in healthcare. However, even after Italian Law n. 219/2017 on informed consent and advanced treatment directives, many controversial aspects remain with respect to the entitled subject’s autonomy and thus to the full application of the law. The temporal dissonance between care planning and health intervention was one of the main cons, while the entitled subject reference compared to caregivers and practitioners was the main pro. In terms of practical application, the lack of knowledge and practice of ADs by citizens on the one hand, and the poor reference and valorisation to ADs by healthcare professionals on the other, were discussed. No less the frequent reference by the healthcare practitioners to the family members or surrogates in the health choices for the subjects with neuro-psychiatric diseases, or in geriatric setting, results critical, in particular when deviating from settled ADs. Furthermore, the figure of the trustee, as a simple reference for the ADs, is compared to the function of the health guardian, endowed with specific powers of representation; the latter often belatedly and improperly involved in health choices. Some insights from daily consulting activities are proposed for clinical practice, particularly with respect to contingent choices, while highlighting the need to use the appropriate tools provided by law. The regularly updated ADs together with the health guardian function, despite some limitations, fully respond to the need to guarantee clinically, legally, and ethically the entitled person’s autonomy and the balancing of rights.
References
Di Paolo M, Gori F, Papi L, Turillazzi E. A review and analysis of new Italian law 219/2017: 'provisions for informed consent and advance directives treatment'. BMC Med Ethics. 2019 Mar 4;20(1):17. doi: 10.1186/s12910-019-0353-2.
Delbon P, Cacace S, Conti A. Advance care directives: Citizens, patients, doctors, institutions. J Public Health Res. 2019 Dec 4;8(3):1675. doi: 10.4081/jphr.2019.1675.
Sedini C, Biotto M, Crespi Bel'skij LM, Moroni Grandini RE, Cesari M. Advance care planning and advance directives: an overview of the main critical issues. Aging Clin Exp Res. 2022 Feb;34(2):325-330. doi: 10.1007/s40520-021-02001-y.
Wong HJ, Seow H, Gayowsky A, Sutradhar R, Wu RC, Lim H. Advance Directives Change Frequently in Nursing Home Residents. J Am Med Dir Assoc. 2024 Aug;25(8):105090. doi: 10.1016/j.jamda.2024.105090.
Zivkovic T. Forecasting and foreclosing futures: The temporal dissonance of advance care directives. Soc Sci Med. 2018 Oct;215:16-22. doi: 10.1016/j.socscimed.2018.08.035.
Botti C, Vaccari A. End-of-life decision-making and advance care directives in Italy. A report and moral appraisal of recent legal provisions. Bioethics. 2019 Sep;33(7):842-848. doi: 10.1111/bioe.12615.
Blandi L, Fidalgo TM, Davids R, Bolcato V. Navigating the complexity of cross-cultural perspectives on assisted suicide in neurological diseases and mental disorders: from legal perspectives to public health research. Public Health. 2024 Jan;226:e5-e6. doi: 10.1016/j.puhe.2023.11.030.
Porteri C, Ienco G, Piccinni M, Pasqualetti P. Towards the implementation of law n. 219/2017 on informed consent and advance directives for patients with psychiatric disorders and dementia. Physicians' knowledge, attitudes and practices in four northern Italian health care facilities. BMC Med Ethics. 2024 Jan 6;25(1):7. doi: 10.1186/s12910-023-00997-8.
Tannou T, Gzil F, Kennelly SP, Tournoy J, Frisardi V, Soysal P. How do geriatricians evaluate decision-making ability for older adults with cognitive impairment? Results from an European survey. Eur Geriatr Med. 2023 Oct;14(5):953-960. doi: 10.1007/s41999-023-00852-4.
Alfeo F, Lanciano T, Abbatantuono C, et al. Cognitive, Emotional, and Daily Functioning Domains Involved in Decision-Making among Patients with Mild Cognitive Impairment: A Systematic Review. Brain Sci. 2024 Mar 14;14(3):278. doi: 10.3390/brainsci14030278.
Whelan PJ, Oleszek J, Macdonald A, Gaughran F. The utility of the Mini-Mental State Examination in guiding assessment of capacity to consent to research. Int Psychogeriatr. 2009 Apr;21(2):338-44. doi: 10.1017/S1041610208008314.
Freedman D, Zaami S. Neuroscience and mental state issues in forensic assessment. Int J Law Psychiatry. 2019 Jul-Aug;65:101437. doi: 10.1016/j.ijlp.2019.03.006.
Aravind H, Taylor M, Gill N. 'Evaluation of testamentary capacity: A systematic review'. Int J Law Psychiatry. 2024 Mar-Apr;93:101969. doi: 10.1016/j.ijlp.2024.101969.
Nakanishi M, Martins Pereira S, Van den Block L, et al. Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care. Lancet Healthy Longev. 2024 May;5(5):e370-e378. doi: 10.1016/S2666-7568(24)00043-6.
Montanari Vergallo G. The Moral Bindingness of Advance Directives. Camb Q Healthc Ethics. 2023 Jul;32(3):447-449. doi: 10.1017/S0963180122000901.
Bevilacqua G, Bolcato M, Rodriguez D, Aprile A. Shared care plan: an extraordinary tool for the personalization of medicine and respect for self-determination. Acta Biomed. 2020 Apr 29;92(1):e2021001. doi: 10.23750/abm.v92i1.9597.
Bonsignore A, Smith A, De Stefano F, Molinelli A. Health management and patients who lack capacity: forms of guardianship in European health policy. Health Policy. 2014 Feb;114(2-3):246-53. doi: 10.1016/j.healthpol.2013.07.017.
Cipolletta S, Reggiani M. End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis. Palliat Med. 2021 Jan;35(1):209-218. doi: 10.1177/0269216320967280.
Bonsignore A, Bragazzi NL, Basile C, et al. Development and Validation of a Questionnaire investigating the Knowledge, Attitudes and Practices of Healthcare Workers in the Field of Anesthesiology concerning the Italian Law on Advance Healthcare Directives: a Pilot Study. Acta Biomed. 2021 Sep 2;92(4):e2021092. doi: 10.23750/abm.v92i4.11314.
Bolcato M, Feola A, Sanavio M, Amadasi A, Crenna S, Landi G, Tettamanti C. The state of knowledge of young Italian medicolegal doctors on the law of provisions for informed consent and advance treatment directives: a multi-centric survey two years after the enactment of Law 219 of 2017. Acta Biomed. 2020 Aug 10;92(1):e2021005. doi: 10.23750/abm.v92i1.10129.
Kituuka O, Munabi IG, Mwaka ES, Galukande M, Harris M, Sewankambo N. Informed consent process for emergency surgery: A scoping review of stakeholders' perspectives, challenges, ethical concepts, and policies. SAGE Open Med. 2023 Jun 15;11:20503121231176666. doi: 10.1177/20503121231176666.
Nicholas LH, Langa KM, Halpern SD, Macis M. How do surrogates make treatment decisions for patients with dementia: An experimental survey study. Health Econ. 2024 Jun;33(6):1211-1228. doi: 10.1002/hec.4810.
Montanari Vergallo G, Busardò FP, Berretta P, Marinelli E, Zaami S. Advance healthcare directives: moving towards a universally recognized right. Eur Rev Med Pharmacol Sci. 2018 May;22(10):2915-2916. doi: 10.26355/eurrev_201805_15043.
Viola R V, Di Fazio N, Del Fante Z, et al. Rules on informed consent and advance directives at the end-of-life: the new Italian law. Clin Ter. 2020 Mar-Apr;171(2):e94-e96. doi: 10.7417/CT.2020.2195.
Silvestre M, Corradi S, De Luca BP, Stellacci A, Dell'Erba A, Marrone M. Advance Treatment Provision (DAT): Italian Legislation in the European Context. A Comparative Analysis. Front Public Health. 2022 Apr 6;10:826194. doi: 10.3389/fpubh.2022.826194.
Consent and Complications in Health Care: The Italian Context. Healthcare (Basel). 2023 Jan 27;11(3):360. doi: 10.3390/healthcare11030360.
Golden SE, Rubim F, Thammana R, et al. Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians. PEC Innov. 2023 Dec 4;3:100241. doi: 10.1016/j.pecinn.2023.100241.
Morena D, Lippi M, Di Fazio N, et al. Capacity to Consent in Healthcare: A Systematic Review and Meta-Analysis Comparing Patients with Bipolar Disorders and Schizophrenia Spectrum Disorders. Medicina (Kaunas). 2024 May 5;60(5):764. doi: 10.3390/medicina60050764.
Gasparini M, Moro V, Amato S, Vanacore N, Gambina G. The evaluation of capacity in dementia: ethical constraints and best practice. A systematic review. Ann Ist Super Sanita. 2021 Jul-Sep;57(3):212-225. doi: 10.4415/ANN_21_03_04..
Bolcato V, Franzetti C, Fassina G, Basile G, Martinez RM, Tronconi LP. Comparative study on informed consent regulation in health care among Italy, France, United Kingdom, Nordic Countries, Germany, and Spain. J Forensic Leg Med. 2024 Apr;103:102674. doi: 10.1016/j.jflm.2024.102674.
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