Abstract
Family members of older incompetent patients are increasingly playing an essential role in the decision-making process relating to medical treatment. Furthermore, rights of patients and carers and the extent of their legal involvement vary widely across the European Union. Starting with an illustrative case within the Italian legal framework, this review focuses on statutory laws in the European Union to analyse the role and the rights of surrogates on behalf of older incompetent patients. The authors have identified two main essential areas of surrogate’s law in Europe, in the absence of the advance directives: the role of family members automatically accepted as surrogates by law and a legal representative appointed by a court.
Similar content being viewed by others
References
Legge 9 Gennaio 2004, n. 6.Gazzetta Ufficiale della Repubblica Italiana n 14 del 19. Gennaio 2004. http://www.camera.it/parlam/leggi/04006I.htm
Amministratore di Sostegno. sentenza Corte di Cassazione n 23707 del 20.dicembre 2012. http://www.neldiritto.it/appgiurisprudenza
Karlawish Jason (2008) Measuring Decision-Making Capacity in cognitively impaired individuals. Neurosignals 16(1):91–98
Plassman BL, Langa KM, Fisher GG et al (2008) Prevalence of cognitive impairment without dementia in the United States. Ann Intern Med 148(6):427–443
Reymont V, Bingley W, Buchanan A et al (2004) Prevalence of mental incapacity medical inpatients and associated risk factors: a cross-sectional study. Lancet 364(9443):1421–1427
Inouye SK, Westendorp RGJ, Saczynski JS (2014) Delirium in elderly people. Lancet 383(9920):911–922
Karlawish JH, Casarett DJ, James BD (2002) Alzheimer’s disease patients’ and caregivers’ capacity, competency, and reasons to enrol in an early-phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 50(12):2019–2024
Hickman SE, Weaver MT, Habermann B, Helft PR et al (2014) Decision making for older adults with advanced cancer: Patient and family member perspectives. J Clin Oncol 32(31_suppl):101
Martin Lee LAM, Goldstein S (2017) EMS, capacity and competence. In: StatPearls. StatPearls Publishing, Treasure Island https://www.ncbi.nlm.nih.gov/books/NBK470178/ (Updated 2017 Nov 21; Internet)
Bisbing SB (1998) Competency and capacity: a primer. In: Sanbar SS, Gibofsky A, Firestone MH et al (eds) Legal medicine, 4th edn. American College of Legal Medicine, St. Louis, pp 32–43
Sjöstrand M, Karlsson P, Sandman L et al (2015) Conceptions of decision-making capacity in psychiatry: interviews with Swedish psychiatrists. BMC Med Ethics 16:34
Herman Nys, Peter Raeymaekers. Rights, autonomy and dignity of people with dementia (2018) Competence assessment and advance directives for people with dementia: ethical and legal aspects. https://www.kbs-frb.be/en/Virtual-Library/2013/307047
Giampieri M (2012) Communication and informed consent in elderly people. Minerva Anestesiol 78(2):236–242
Appelbaum PS (2007) Assessment of patients competence to consent to treatment. N Engl J Med 357:1834–1840
Sessums Laura L, Zembrzuska Hanna, Jackson Jeffrey L (2011) Does this patient have medical Decision-Making Capacity? JAMA 306(4):420–427
Karel MJ, Gurrera RJ, Hicken B, Moye J (2010) Reasoning in the capacity to make medical decisions: the consideration of values. J Clin Ethics 21(1):58
Etchells, E. E,1997. Aid to capacity evaluation. University of Toronto Joint Centre for bioethics. http://www.jcb.utoronto.ca/tools/documents/ace.pdf
Grisso T (2003) Evaluating competencies: forensic assessments and instruments, 2nd edn. Kluwer Academic/Plenum, New York
Palmer BW, Harmell AL (2016) Assessment of healthcare Decision-Making-Capacity. Arch Clin Neuropsychol 31(6):530–540
The social work profession in Newfoundland and Labrador. Social work and Decision specific capacity assessments. http://www.nlasw.ca/sites/default/files/inline-files/Social_Work_And_Decision-Specific_Capacity_Assessments_Final.pdf
Wang C, Chan CLW, Chow AYM (2018) Social workers involvement in advance care planning: a systematic narrative review. BMC Palliat Care. https://doi.org/10.1186/s12904-017-0218-8
Charles L, Parmar J, Brémault-Phillips S, Dobbs B, Sacrey L, Sluggett B (2017) Physician education on decision-making capacity assessment: current state and future directions. Can Fam Phys 63(1):e21–e30
Dunn LB, Nowrangi MA, Palmer BW, Jeste DV (2006) Saks ER Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 163(8):1323–1334
Mitnick S, Leffler C, Hood VL, for the American College of Physicians Ethics, Professionalism and Human Rights Committee (2010) Family caregivers, patients and physicians: ethical guidance to optimize relationships. J Gen Intern Med 25(3):255–260
Kluge E-HW (2008) Incompetent patients, substitute decision making, and quality of life: some ethical considerations. Medscape J Med 10(10):237
Lang F, Quill T (2004) Making decisions with families at the end of life Am Fam Phys 70(4):719–723
Consultant 360. Surrogate Decision Making : medical and legal implications for healthcare providers. Consultant Volume 18 - Number 07 - July - August, 2010
Fritch J, Petronio S, Helft PR, Torke A (2013) Making decisions for hospitalized older adults: ethical factors considered by family surrogates. J Clin Ethics 24(2):125–134
Soares J, Barros H, Torres-Gonzales F et al (2010) Abuse and health among elderly in Europe. Lithuania University of Health Sciences Press, Kaunas
Lachs MS, Pillemer KA (2015) Elder Abuse. N Engl J Med 373(20):194
Accompanying guide (2018) The European Charter of the rights and responsibilities of older people in need of long-term careandassistance. EUSTAcEA project under DAPHNE III programme. https://www.ageplatform.eu/images/stories/22204_AGE_charte_europeenne_EN_v4.pdf
Georgas J, Mylonas K, Bafiti T, Christakopoulou S, Poortinga YH, Kagicibasi C, Orung S, Sunar D, Kwak K, Ataca B, Berry JW, Charalambous N, Goodwin R, Wang W-Z, Angleitner A, Stepanikova I, Pick S, Givaudan M, Zhuravliova- Gionis I, Konantambigi R, Gelfand MJ, Velislava M, McBride-Chang M, Kodic Y (2001) Functional Relationships in the nuclear and extended family: a 16 culture study. Int J Psychol 36:289–300
Marcia Carteret. Cultural Differences in Family dinamics. http://www.dimensionofculture.com/2010/11/culture and family-dinamics
European Treaty series (2018) Convention for the protection of human rights and dignity of the human being concerning the application of biology and medicine: convention on human rights and biomedicine. https://rm.coe.int/1680007cf98
Andorno R (2005) The Oviedo convention: a European Legal Framework at the intersection of human rights and health law. J Int Biotechnol Law 2(4):133–143
Chart of Signatures and Ratifications of Treaty 164. http://www.coe.int/en/web/conventions/full-list
Alzheimer Europe (2018). http://www.alzheimer-europe.org/Policy-in-Practice2/Countrycomparisons
The Hungary healthcare Act (2018). http://www2.ohchr.org/English/bodies/cescr/docs/E.C.12.HUN.3-Annex10.pdf
(2002) The Rights of the patient. Belgian Act. http://ncdlaw.be/publications/Publicatie_Rights%20of%20the%20patient.pdf (Dated 22 August 2002)
Bundesgetz, mit demBundesgesetz, mit dem das Sachwalterrecht im allgemeinen bürgerlichen Gesetzbuch und das Ehegesetz, das Außerstreitgesetz, das Konsumentenschutzgesetz, das Vereinssachwalter- und Patientenanwaltsgesetz, die Notariatsordnung, das Gerichtsorganisationsgesetz und das Berufsrechts-Änderungsgesetz 2006 geändert werden (Sachwalterrechts-Änderungsgesetz 2006 – SWRÄG 2006. http://www.ris.bka.gv.at/Document
(2002) Ley 41/2002, de 14 de noviembre, bàsica reguladora de la autonomia del paciente y de derechos y obligaciones en material de informaciòn y documentaciòn clìnica. https://www.boe.es/buscar/doc.php?id=BOE-A-2002-22188
Hondius E, van Hoof A (1996) The new Dutch Law on Medical Services. Neth Int Law Rev 43:1–17
Law on the Rights of Patients and Compensation of the Damage to their health. Republic of Lithuania (1996). https://e-seimas.lrs.lt/portal/legalAct/lt/TAD/TAIS.42491?jfwid=rivwzvpvg
Law No. 3418/2005 (2005). https://dikaiomamou.gr/en/code-of-medical-ethics/
Wynn S (2014) Decisions by surrogates: an overview of surrogate consent laws in the United States. Bifocal 36(1):10–14
Directive 2001/20/EC of the European Parliament and of the Council of 4 of April 2001 on the approximation of the laws, regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use. Official Journal of the European Communities; L 121/34; 1.5.2001
Assisted Decision-Making (Capacity) Act (2015). http://www.Irishstatutebook.ie/eli/2015/act/64/enacted/en
Petrini C (2010) Informed consent in experimentation involving mentally impaired persons: ethical issues. Ann Ist Super Sanita 46(4):411–421. https://doi.org/10.4415/ANN_10_04_09
La Justice Luxembourg. Tutelle- Curatelle. http://justice.public.lu/fr/famille/tutelle-curatelle/tutelle-curatelle/index.html
Open Society Instiutute. Rights of People with intellectual disabilities. Access to Education and Employment, Croatia. https://www.opensocietyfoundations.org/sites/default/files/croatia_2005_0.pdf
Law n. 448/2006 (2006). http://www.equalrightstrust.org/content/romania-law-4482006-regard-protection-and-promotion-handicapped-persons-republished-2008
European Union Agency for fundamental Rights, Slovakia. http://fra.europa.eu
Patients rights in the EU- Bulgaria . EUROPEAN ETHICAL - LEGAL PAPERS N°8. http://www.eurogentest.org/fileadmin/templates/eugt/pdf/bulgaria.pdf
Bundesärztekammer. (Model) Professional Code for Physicians in Germany. 2011. http://www.bundesaerztekammer.de/fileadmin/user_upload/downloads/MBOen2012.pdf
Sudore RL, Fried TR (2010) Redefining the “planning” in advance care planning: preparing for the end of- life decision making. Ann Intern Med 153(4):25
Bravo G, Arcand M, Blanchette D et al (2012) Promoting planning for health care and research among older adults: a randomised controlled trial. BMC Med Ethics 13:1. https://doi.org/10.1186/1472-6939-13-1
Detering KM, Hancock AD, Reade MC, Silvester W (2010) The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 340:c1345
Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou X-H, Wolinsky FD (2001) The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med 16(1):32–34
Legislation.gov.uk. Mental Capacity Act. https://www.legislation.gov.uk/ukpga/2005/9/contents
Nys H et al (2007) Patient rights in the EU—Estonia, European Ethical-Legal Papers, No. 5, Leuven
https://www.rcpsych.ac.uk/healthadvice/problemsanddisorders/mentalcapacityandthelaw.asx
(2002) Loi du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé. Titre premier du livre premier du Code de la Santé Publique, articles L. 1111-2 and L. 1111-4. J Off (54) (5 Mar 2002)
Parliamentary Secretariat for health-Malta. Patient Charter. http://www.careandcure.gov.mt/wp-content/uploads/2017/11/Patient-Charter-English.pdf
Author information
Authors and Affiliations
Contributions
Concept and design: NV; LT; Data collection: AP, AF; Analysis and interpretation of data: NV; Loredana Tibullo, MV; Manuscript writing and approval: NV, AE; Revision of Manuscript: NV; We would thank BB for the help in the revision of the manuscript and AG for the precious help in the revision of the English style.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have not conflict of interest.
Ethical approval
This article does not contain any studies with human participants or animals performed by any of the authors.
Informed consent
For this type of study formal consent is not required.
Rights and permissions
About this article
Cite this article
Tibullo, L., Esquinas, A.M., Vargas, M. et al. Who gets to decide for the older patient with a limited decision-making capacity: a review of surrogacy laws in the European Union. Eur Geriatr Med 9, 759–769 (2018). https://doi.org/10.1007/s41999-018-0121-8
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s41999-018-0121-8