Abstract

The significant increase in the elderly population and the high incidence of chronic and degenerative diseases are a matter of concern with regard to issues inherent to promotion of autonomy and preservation of human rights and quality of life in this population group. Exercising the right to make a decision impacts various aspects of human life, such as health care, asset management, relationships, choice of housing, family care, religious activities and even daily routine activities. Supported decision-making (SDM) can be an important tool for promoting autonomy among elderly people living with dementia, as it consists of an approach based on respect for human rights, in which the aim is to establish control over the mechanisms for provision of support so that all people can exercise the right to make decisions inherent to their lives. In order to implement this more robustly in Brazil, it is fundamental to change the culture towards valuing elderly people and implementing the notion that protection involves offering mechanisms for promoting personal autonomy, which is partly achieved through encouragement of social engagement and strengthening community ties. In this regard, the notion of empowerment, based on concepts arising from Intervention Bioethics, is relevant.

Key words:
Aged; Dementia; Personal autonomy; Human rights; Bioethics

Introduction

The aging of the population has triggered discussions around the world, with prominence for topics relating to quality of life, healthcare and preservation of decision-making autonomy for elderly people¹1 Herring J. Older People in Law and Society. Oxford: Oxford University Press; 2009.. However, at the same time that life expectancy is increasing, there is also notable presence of discriminatory acts in relation to elderly people²2 Machado ILO, Garrafa V. Bioética, o envelhecimento no Brasil e o dever do Estado em garantir o respeito aos direitos fundamentais das pessoas idosas. Rev Direitos Garantias Fundam 2020; 21(1):79-106..

Agism, a term used to describe acts of discrimination, stigmatization and prejudice towards elderly people, results from negative social constructs relating to aging³3 Neri AL. Atitudes e conhecimentos em relação à velhice. In: Neri AL. Idosos no Brasil: vivências, desafios e expectativas na terceira idade. São Paulo: Editora Fundação Perseu Abramo, Edições SESC; 2007. p. 33-46.. It is increasingly present in western societies⁴4 World Health Organization (WHO). Global Report on Ageism. Geneva: WHO; 2021., and has been characterized as the third great “ism”, after sexism and racism⁵5 Butler RN. Age-Ism: Another Form of Bigotry. Gerontologist 1969; 9(4):243-246.. Age discrimination entails constant limitations and violations of the human rights of elderly people, who are sometimes considered to be “weak”, “a social burden” or “unable to make decisions”⁶6 Neri AL. Atitudes e Crenças sobre Velhice: análise de conteúdo de textos do jornal O Estado de São Paulo publicados entre 1995 e 2002. In: Von Simson ORM, Neri AL, Cachioni M. Múltiplas Faces da Velhice no Brasil. 3ª ed. Campinas: Alínea; 2003. p. 13-54.. Moreover, elderly people are constantly subjected to violations of excising their personal autonomy, especially with regard to decisions in the field of healthcare and asset management⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022..

Old age brings greater propensity for chronic diseases that require social and state-led actions aimed at this stage of life. In Brazil, the number of elderly people has grown over the years. It has been estimated that by the year 2025, the elderly population will have tripled in relation to its size in the year 2000 and that by 2045 the number of elderly people will be greater than the number of children⁸8 Wong LLR, Carvalho JA. O Rápido Processo de Envelhecimento Populacional do Brasil: Sérios Desafios para as Políticas Públicas. Rev Bras Est Pop 2006; 23(1):5-26.. Furthermore, in 2016, Brazil had the second highest age-standardized prevalence of dementia in the world⁹9 GBD 2016 Dementia Collaborators. Global, regional, and national burden of Alzheimer's disease and other dementias, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019; 18(1):88-106., such that from 2007 to 2017, there was a 55.5% increase in the number of deaths due to dementia in this country¹⁰10 Feter N, Leite JS, Caputo EL, Cardoso RK, Rombaldi AJ. Who are the people with Alzheimer's disease in Brazil? Findings from the Brazilian Longitudinal Study of Aging. Rev Bras Epidemiol 2021; 24:e210018.. This demonstrates the urgency of action towards adoption of social, economic, healthcare and legal mechanisms for promotion and preservation of rights and quality of life in old age.

Dementia affects the elderly population to a greater degree and entails declining cognitive function. At its advanced stage, it may compromise the mental ability to make decisions¹¹11 World Health Organization (WHO). Demência [Internet]. 2021 [cited 2022 mar 3]. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia.
https://www.who.int/news-room/fact-sheet... , which has an impact on exercising personal autonomy. This matter is of relevance in that autonomy is an important construct of human dignity¹²12 Andorno R. A noção paradoxal de dignidade humana. Rev Bioetica 2009; 17(3):435-449.. The power to make decisions and have them respected forms part of recognition of an individual as a person within society. Likewise, imposition of limits to this right, especially when supplanted by discriminatory acts, has the power to nullify a person in relation to society. However, even though dementia affects individuals’ decision-making abilities, it cannot be considered to be the immediate reason for determining that a person is incapable of making decisions¹³13 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722.. Thus, studies and actions are required, in order to contribute towards development of mechanisms for providing support for elderly people who wish to make decisions, so that they can do so and have these decisions recognized and respected¹⁴14 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102..

Given the complexity of this topic and its individual and social impacts, discussions can take place within different fields of study. Bioethics, understood as applied ethics and as a field of knowledge in which multidisciplinary studies are developed¹⁵15 Garrafa V. Da bioética de princípios a uma bioética interventiva. Rev Bioetica 2005; 13(1):125-134., constitutes an important space for discussions regarding promotion of human rights⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022.^,1616 Andorno R. Bioética y Dignidad de La Persona. 2ª ed. Espanha: Tecnos; 2012.^,1717 Albuquerque A. Bioética e Direitos Humanos. 1ª ed. São Paulo: Edições Loyola; 2011. and care aimed towards elderly people¹⁸18 Paranhos DGAM, Albuquerque A. Direitos humanos dos pacientes como instrumentos bioéticos de proteção das pessoas idosas. Cad Ibero-Am Direito Sanitario 2019; 8(1):53-64., especially those living with dementia.

Supported decision-making (SDM) may be an important instrument for promotion of autonomy among elderly people living with dementia. It consists of an approach based on respect for human rights in which the aim is to institute mechanisms that provide support to enable all individuals to exercise their right to make decisions inherent to their lives. This approach arose as a criticism of the model of substitute decision-making, in which someone is nominated judicially to make decisions in the place of an individual who is considered incapable of making them¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019., as occurs in situations of guardianship in Brazil.

The aim of this article was to discuss the approach of SDM and the possibility of applying it for promoting autonomy among elderly people living with dementia in Brazil. For this, theoretical perspectives relating to human rights, from the fields of law and bioethics, were used. This research was both theoretical and document-based, grounded in studies developed by Albuquerque²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018., Donnelly²¹21 Donnelly M. Best Interests in the Mental Capacity Act: Time to say Goodbye? Med Law Rev 2016; 24(3):318-332.

22 Donnelly M. Healthcare Decision-Making and the Law. Cambridge: Cambridge University Press; 2010.^-2323 Donnelly M. Deciding in dementia: The possibilities and limits of supported decision-making. Int J Law Psychiatry. 2019; 66:101466., Shogren et al.¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.^,2424 Shogren KA, Wehmeyer ML, Uyanik H, Heidrich M. Development of the Supported Decision Making Inventory System. Intellect Dev Disabil 2017; 55(6):432-439. and Sabbata¹³13 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722., in dialogue with the bioethical contributions brought in by Garrafa¹⁵15 Garrafa V. Da bioética de princípios a uma bioética interventiva. Rev Bioetica 2005; 13(1):125-134.^,2525 Garrafa V. Inclusão social no contexto político da bioética. Rev Bras Bioet 2005; 1(2):22-32.. It was also based on the Convention on the Rights of Persons with Disabilities (CRPD)²⁶26 Nations U. Convention on the Rights of Persons with Disabilities [Internet]. 2006 [cited 2022 mar 3]. Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities.
https://www.ohchr.org/en/instruments-mec... , on General Comment no. 1 of the Committee on the Rights of Persons with Disabilities²⁷27 Committee on the Right of People with Disabilities. Convention on the Rights of Persons with Disabilities. Article 12: Equal Recognition before the Law [Internet]. Committee on the Right of People with Disabilities; 2006 [cited 2022 mar 12]. Available from: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx., on the Interamerican Convention on the Protection of the Human Rights of Elderly People and on the document about Supported Decision-Making and Life Planning, drawn up by the World Health Organization (Quality Rights)²⁸28 World Health Organization (WHO). Quality Rights Specialized training. Supported Decision-Making and Advance Planning. Course Guide [Internet]. 2019 [cited 2022 mar 12]. Available from: http://apps.who.int/bookorders.
http://apps.who.int/bookorders... . These are internationally recognized documents on the topics of SDM and promotion of autonomy among elderly people living with dementia. In addition, regarding the mechanisms used in applying SDM, this study was based on the document developed in Canada by Bach and Kerzner²⁹29 Bach M, Kerzner L. A New Paradigm for Protecting Autonomy and the Right to Legal Capacity Prepared for the Law Commission of Ontario. Ontario: LCO; 2010. regarding protection of autonomy and the right to legal capacity; and on the Brazilian legislation on this topic³⁰30 Brasil. Lei no 10.406, de 10 de janeiro de 2002. Institui o Código Civil Brasileiro. Diário Oficial da União 2002; 11 jan.^,3131 Brasil. Lei no 13.146, de 6 de julho de 2015. Lei Brasileira de Inclusão. Diário Oficial da União 2015; 7 jul..

The paradigm of supported decision-making

In the 1960s, movements of greater strength that sought recognition for equality of the rights of people with disabilities started to become better known and more powerful around the world. Criticisms of practices imposed on people with disabilities, such as eugenics and sterilization, limitations on rights, segregation and discriminatory policies, were raised. At that time, people with disabilities were considered incapable of making decisions, especially those involving their health, financial affairs, legal decisions and relationships¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.. In 1982, in Canada, recognition of the right of people with disabilities to make decisions was strengthened through a decision by a Canadian court that recognized the right of Justin Clark, who had been born with cerebral palsy, to make decisions about his life³²32 Blanck P, Martinis JG. "The Right to Make Choices": The National Resource Center for Supported Decision-Making. Inclusion 2015; 3(1):24-33., and recognize the importance of placing value on unconventional communication.

A series of events in different countries led to movement towards recognition of the equality of rights of people with disabilities, in relation to other people. Environmental barriers and stereotypes that limit opportunities and rights for people with disabilities were highlighted. Understanding of disability through a social model gained strength¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.. In 2007, the CRPD came into force internationally and expressly introduced the topic of legal capacity and the SDM approach within the sphere of human rights³³33 Albuquerque A, Antunes CMTB. Tomada de decisão compartilhada na saúde: aproximações e distanciamentos entre a ajuda decisional e os apoios de tomada de decisão. Cad Ibero-Am Direito Sanit 2021; 10(1):203-223..

Article 12 of the CRPD states that for people with disabilities, their right to make decisions about their lives should be recognized, in equality with other people. Likewise, for the signatory countries, it defines the obligation that they should adopt appropriate measures for providing support mechanisms for people with disabilities. In accordance with the interpretation adopted in General Comment No. 1 of the Committee on the Rights of Persons with Disabilities, these mechanisms should include both formal and informal support²⁷27 Committee on the Right of People with Disabilities. Convention on the Rights of Persons with Disabilities. Article 12: Equal Recognition before the Law [Internet]. Committee on the Right of People with Disabilities; 2006 [cited 2022 mar 12]. Available from: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx.. This interpretation reinforces the understanding that new comprehension of legal capacity based on the SDM approach should be adopted, to the detriment of the regime of substitute decision-making.

It needs to be emphasized that legal capacity is the guardian of personal autonomy²²22 Donnelly M. Healthcare Decision-Making and the Law. Cambridge: Cambridge University Press; 2010.. This refers to legal recognition of the titularity of an individual’s rights, while also encompassing legal agency, which refers to capacity to personally exercise these rights²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.. In summary, legal capacity is what makes a person a subject with rights in the eye of the law. This differs from decision-making capacity, which is a matter of having the mental abilities needed for making a decision, and this does not have any direct link with any mental disorder or disease²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.. Decision-making is a process of receiving information and having the ability to comprehend, understand and weight it up and then elaborate and communicate a decision, while taking into consideration the possible consequences of the choice that is made³⁴34 Donnelly M. Deciding in dementia: The possibilities and limits of supported decision-making. Int J Law Psychiatry 2019; 66:101466.. In summary, decision-making capacity involves the abilities needed to make a decision, which may be influenced by social, environmental and health-related factors²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.^,2222 Donnelly M. Healthcare Decision-Making and the Law. Cambridge: Cambridge University Press; 2010.. The two concepts are related, but cannot be confused. For this reason, a person with reduced decision-making capacity cannot have his or her legal capacity removed.

With regard to elderly people, articles 3 and 7 of the Interamerican Convention on the Protection of the Human Rights of Elderly People prescribe that dignity, independence, protagonism and personal autonomy are human rights belonging to elderly people. Article 30 lays down that elderly people have equal rights to the legal capacity to make decisions regarding all aspects of their lives³⁵35 Organização dos Estados Americanos. Convenção Interamericana Sobre a Proteção Dos Direitos Humanos Dos Idosos. Washington, D.C.: Assembleia Geral: 2015.. This same provision states that countries should adopt measures that provide elderly people with access to the support that they may require in order to exercise their legal capacity. This document reaffirms the importance of legal capacity as a human right that should be recognized especially with regard to elderly people.

The SDM approach is a new paradigm that is consistent with an innovative movement that enables a new view of the legal and social premises that determine what a person is “incapable of doing”, such that it becomes a question of “what would be necessary” for that person to be able to make a decision³⁶36 Glen KB. Changind Paradigms: Mental Capacity, Legal Capacity, Guardianship, and Beyond. Columbia Human Rights Law Review 2012; 44:93-169.. This change of perspective is in line with respect for dignity and also with promotion of autonomy for elderly people.

The main points from General Comment No. 1 are that support should be made available to all individuals who need it and wish to make use of such support; such that disabilities or illnesses should not be barriers to obtaining support. The forms of support should be governed by the individual’s wishes and preferences and not by what is perceived or interpreted to be in his or her objective best interests. The way in which an individual communicates also cannot form a barrier against obtaining support in making decisions, even if the means of communication is unconventional and the individual is only understood by a few people. Another point is that countries should facilitate creation and availability of distinct support mechanisms, including for people who live in a state of isolation. Thus, lack of financial resources cannot be a barrier against access to support and, for this reason, means that are free of charge should be provided. Furthermore, provision of support cannot affect personal autonomy or limit the rights of people who make use of it, given that such effects would impede them from making decisions. In addition, the support should not be an imposition and, for this reason, the individual must have the right to refuse it. In processes that involve legal capacity, there need to be safeguards to ensure respect for the individual’s wishes and preferences. Lastly, provision of support should not be made conditional on an assessment of mental capacity²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.^,2727 Committee on the Right of People with Disabilities. Convention on the Rights of Persons with Disabilities. Article 12: Equal Recognition before the Law [Internet]. Committee on the Right of People with Disabilities; 2006 [cited 2022 mar 12]. Available from: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx..

The SDM approach contrasts greatly with the approach of substitute decision-making. In the latter, some people are considered not to possess the decision-making and legal capacity to formulate decisions and exercise their rights and, for this reason, other people should decide things for them. This thinking is based on the paternalistic concept that protection and promotion of the rights of certain individuals, such as elderly people living with dementia, should be done through mechanisms in which a third party will make such decisions in their name, based on the criteria of their objective best interests²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.. However, the SDM approach starts from the concept that protection and promotion of rights takes place through promotion of personal autonomy, among other factors¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.^,2222 Donnelly M. Healthcare Decision-Making and the Law. Cambridge: Cambridge University Press; 2010., governed by respect for the individual’s wishes and preferences²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018..

In summary, the approach of SDM differs from that of substitute decision-making in its foundations. While the first is governed by the social concept of promoting egalitarian access to rights for all people, through recognizing and respecting their personal autonomy and raising the quality of human rights¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.^,2020 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018., the second is governed by the concept of inequality, in that some people, depending on their illnesses, age or other characteristics, are considered to be legally incapable and cannot exercise their rights. This understanding forms an affront to personal autonomy and consequently to human rights.

In the legal system governed by the approach of substitute decision-making, as is used in Brazil, guardianship processes are commonly used for nominating persons to make decisions on behalf of others³⁷37 Santos CC. Curatela e Tomada de Decisão Apoiada: Teoria e Prática. Vol. 1. 1ª ed. Curitiba: Juruá; 2021.. On the other hand, the system governed by the SDM approach starts from the concept that, with adequate support at hand, individuals can exercise their legal capacity and make decisions that are in their own interest. In this approach, substitute decision-making mechanisms serve only for cases in which an individual is unable to manifest his or her wishes in person, such as when an individual is in a state of coma. Even so, such instruments need to be aligned with the SDM approach, in the sense that choices would be made in accordance with what the individual would have decided if he or she had been able to manifest these choices in person²⁷27 Committee on the Right of People with Disabilities. Convention on the Rights of Persons with Disabilities. Article 12: Equal Recognition before the Law [Internet]. Committee on the Right of People with Disabilities; 2006 [cited 2022 mar 12]. Available from: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx..

Some countries, such as Germany, Australia, Canada, United States, Ireland, Israel, United Kingdom and Sweden, have moved forward with regard to implementing practical mechanisms for SDM¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.. In a study developed in Canada, for example, seven types of support mechanisms were proposed. These were as follows: a) support for life planning, based on identifying the individual’s values and aims; b) independent advocacy, based on aiding the individual towards expressing his or her wishes and exercising his or her rights and duties; c) communicational and interpretive support, with the aim of helping the individual to communicate through alternative routes, which could include signaling, gestural or vocalization systems, etc.; d) representation agreements, based on sharing the individual’s biography with other people, through a relationship of trust and comprehension of the individual’s means of expression; e) support towards construction of relationships, based on building up connections and support networks for sharing experiences; and f) administrative support, with the aim of helping the individual to bring into reality agreements that were made previously, such as in relation to financing, purchases and sales, etc. These mechanism could be used separately or together, depending on the personality, characteristics and unique needs of each individual²⁹29 Bach M, Kerzner L. A New Paradigm for Protecting Autonomy and the Right to Legal Capacity Prepared for the Law Commission of Ontario. Ontario: LCO; 2010..

Regarding healthcare, the World Health Organization (WHO) has drawn up a practical guide for implementing SDM mechanisms, especially in relation to their implications for healthcare. This guide states that informal mechanisms are mostly provided by family members and friends and are used by all individuals in their day-to-day lives. The following examples are mentioned: support circles, as implemented in Australia and the United Kingdom; personal assistance; peer support; support from family members and friends; and community support. Formal support may be necessary for making complex or important decisions, and is more useful when informal support mechanisms are insufficient for supporting individuals with specific needs. The following were cited as examples: personal ombudsman, as implemented in Sweden; independent advocacy, as implemented in England and Scotland; and open dialogue, as implemented in Finland²⁸28 World Health Organization (WHO). Quality Rights Specialized training. Supported Decision-Making and Advance Planning. Course Guide [Internet]. 2019 [cited 2022 mar 12]. Available from: http://apps.who.int/bookorders.
http://apps.who.int/bookorders... .

In addition, the WHO document lists some key principles for implementing SDM mechanisms, including recognition that all individuals have the right to make decisions. Another of these is the principle that individuals should have the opportunity to receive or reject support that is offered for making decisions, and should have the right to learn through experience and to make poor decisions. For cases in which a given individual’s real wishes and preferences cannot be identified even after making significant efforts to understand them, the best interpretation of these wishes and preferences should be applied, with the aim of respecting this individual’s right to legal capacity and personal autonomy²⁸28 World Health Organization (WHO). Quality Rights Specialized training. Supported Decision-Making and Advance Planning. Course Guide [Internet]. 2019 [cited 2022 mar 12]. Available from: http://apps.who.int/bookorders.
http://apps.who.int/bookorders... . In these cases, the individual can nominate someone who he or she has lived with and trusts, to represent him or her and make decisions that are needed, if this individual has the ability to express this²⁹29 Bach M, Kerzner L. A New Paradigm for Protecting Autonomy and the Right to Legal Capacity Prepared for the Law Commission of Ontario. Ontario: LCO; 2010..

Anticipated directives, living wills and advance care plans can be cited as SDM mechanisms that are important within the field of healthcare. These have the objective of making an individual’s wishes and preferences explicit for future times when this individual might no longer be able to express them in person. Australia can be cited as an example of a country in which legislation, public policies and broad national incentives regarding support instruments for healthcare decision-making exist, including for elderly people living with dementia³⁸38 Sinclair C, Field S, Blake M. Supported Decision-Making in Aged Care: A Policy Development Guideline for Aged Care Providers in Australia. Sydney: Cognitive Decline Partnership Centre; 2018.. Moreover, through other instruments, wishes relating to other fields of life, such as finances, asset management or childcare, can be recorded.

As can be seen, the SDM approach introduces protection of legal capacity into the scope of huma rights, thus giving rise to the understanding that all individuals have the right to have rights and to exercise them in person, and can count on aid through support mechanisms, if needed¹⁹19 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019.^,2020 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.. This approach inaugurates an important differentiated paradigm with regard to comprehension that all individuals can exercise their personal autonomy and make decisions regarding their lives, including elderly people living with dementia⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022.^,1313 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722.^,2323 Donnelly M. Deciding in dementia: The possibilities and limits of supported decision-making. Int J Law Psychiatry. 2019; 66:101466..

Brazilian legal model

With the advent of the Convention on the Rights of Persons with Disabilities (CRPD), part of the Brazilian legislation was altered. The Brazilian law for inclusion of persons with disabilities (LBI) of 2015 instituted a series of rights destined for people with disabilities, including full civil capacity. To this end, the law provides a mechanism for SDM consisting of a legal process for SDM that has been incorporated in the civil code. It enables individuals with disabilities to have the right to nominate people who they trust, to assist these individuals through providing the means and information needed for them to be able to exercise their capacity³⁰30 Brasil. Lei no 10.406, de 10 de janeiro de 2002. Institui o Código Civil Brasileiro. Diário Oficial da União 2002; 11 jan.. This law therefore aids these individuals in making decisions about their lives. It determines that the guardianship process, i.e. the mechanism of substitute decision-making, should only be used as an extraordinary protective measure and should only affect rights relating to assets and business³¹31 Brasil. Lei no 13.146, de 6 de julho de 2015. Lei Brasileira de Inclusão. Diário Oficial da União 2015; 7 jul..

The civil code was also altered to remove the institution of interdiction, through which a person could be declared to have total legal incapacity and a substitute decision-maker could be nominated to make decisions regarding all aspects of that individual’s life. The figure of guardian, instituted through a mechanism of declaration of partial legal incapacity, was maintained for cases in which an individual was unable to express his or her wishes, and for habitual drunks, addicts to toxic substances and profligate individuals³⁰30 Brasil. Lei no 10.406, de 10 de janeiro de 2002. Institui o Código Civil Brasileiro. Diário Oficial da União 2002; 11 jan..

The civil code expressly defines only one formal mechanism for SDM for use in Brazil, which limits its use to people with disabilities and is named “supported decision-making”. However, there is an understanding that SDM mechanisms should be made available to all individuals who need them and want to make use of them, independent of their linkage to disability. This therefore encompasses elderly people living with dementia¹³13 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722.^,2020 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.^,2323 Donnelly M. Deciding in dementia: The possibilities and limits of supported decision-making. Int J Law Psychiatry. 2019; 66:101466.^,2727 Committee on the Right of People with Disabilities. Convention on the Rights of Persons with Disabilities. Article 12: Equal Recognition before the Law [Internet]. Committee on the Right of People with Disabilities; 2006 [cited 2022 mar 12]. Available from: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx.. Although the institution of interdiction was excluded from the civil code, this change was implemented in the civil case code³⁹39 Brasil. Lei no 13.105, de 16 de março de 2015. Institui o Código de Processo Civil. Diário Oficial da União 2015; 17 mar.. For example, article 755 of the latter makes mention of the process through which interdiction is decreed. This article is still used as the basis for decisions in which total guardianship of certain persons is determined⁴⁰40 TJDFT. Processo: 07083554520218070003 Apelação Cível. Curatela. Incapaz. Prova Pericial. Exercício de Direitos. Incapacidade Absoluta. Tomada de Decisão Apoiada. Inviabilidade. Ampliação Dos Limites Da Curatela. Necessidade. Proteção Integral. Dignidade Da Pessoa [Internet]. TJDFT; 2022 [acessado 2022 mar 12]. Disponível em: https://pesquisajuris.tjdft.jus.br/IndexadorAcordaos-web/sistj.
https://pesquisajuris.tjdft.jus.br/Index... , even if this contradicts the LBI. The statute for elderly persons also does not make reference to the possibility of use of SDM mechanisms, and there is provision for use of guardianship to supply consent for elderly people who are undergoing healthcare treatments.

Although the alteration to the legislation was implemented in 2015 and laid down that institution of guardianship should only be used in exceptional cases, many guardianship actions have been presented in Brazil courts over the last few years. The SDM mechanism is little known within Brazilian society and its application within the Brazilian legal system remains tentative. In practice, Brazilian courts continue to make use of guardianship as a paternalistic protection mechanism⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022.^,3737 Santos CC. Curatela e Tomada de Decisão Apoiada: Teoria e Prática. Vol. 1. 1ª ed. Curitiba: Juruá; 2021., with declarations of incapacity to make decisions and nomination of substitute decision-makers who are often alien to the history and life of the elderly person concerned. This shows that the SDM approach has still not been properly implemented in Brazil⁴¹41 Menezes JB, Pimentel ABL, Lins APC. A capacidade jurídica da pessoa com deficiência após a Convenção sobre os Direitos das Pessoas com Deficiência: análise das soluções propostas no Brasil, em Portugal e no Peru. Rev Direito Praxis 2021; 12(1):296-322.. For this reason, there is a need to make adaptations to the legislation, so as to harmonizer the legal provisions that deal with this matter, and to include the explicit possibility of use of support instruments for elderly individuals⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022.^,4242 Oliveira PJS. A Curatela e a Tomada de Decisão Apoiada: A Proteção e a Promoção Da Autonomia Da Pessoa Com Deficiência. 1ª ed. São Paulo: Dialética; 2021..

Practical experience from application of SDM in conjunction with the Public Defenders’ Office of the Federal District has demonstrated that legal professionals have little knowledge of this subject. Moreover, there is little in the Brazilian literature that connects this approach with the scope of human rights, beyond the need to implement non-legal support aimed at creation of programs to aid people involved in care and support through offering training, guidance and other actions for stimulating use of the SDM approach⁴³43 Albuquerque A, Borba G, Dias T, Silva A, Cobucci B. Relato de experiência da aplicação da Tomada de Decisão Apoiada na Defensoria Pública do Distrito federal. In: Vasconcelos EM, editor. Novos Horizontes Em Saúde Mental. Análise de Conjuntura, Direitos Humanos e Protagonismo de Usuários(as) e Familiares. Vol. 1. 1ª ed. São Paulo: Hucitec Editora; 2021. p. 430-454..

Despite the legislative innovations introduced to the Brazilian model, the SDM approach as laid out in General Comment No. 1 can be seen to still be at an embryonic stage in Brazil⁴¹41 Menezes JB, Pimentel ABL, Lins APC. A capacidade jurídica da pessoa com deficiência após a Convenção sobre os Direitos das Pessoas com Deficiência: análise das soluções propostas no Brasil, em Portugal e no Peru. Rev Direito Praxis 2021; 12(1):296-322.^,4444 Menezes J. Tomada de decisão apoiada: o instrumento jurídico de apoio à pessoa com deficiência inaugurado pela Lei nº 13.146/2015. Novos Estud Jurídicos 2018; 23(3):1191-1215.. Actions and public policies of greater robustness are still needed, in order to advance with practical implementation of the SDM approach, such that individuals are regarded as the subjects of their own life processes. Moreover, other support mechanisms based on this approach need to be developed.

SDM for elderly people living with dementia: contributions from bioethics for promotion of autonomy

The significant increase in the elderly population, with accompanying increases in the incidence of chronic and degenerative diseases that are more present in the final stage of life, like dementia, emphasize concerns regarding issues inherent to promotion of autonomy and the decision-making and legal capacity of this population group. Exercising the right to make decisions is reflected in various aspects of human life, such as healthcare, asset management, relationships, choice of housing, family care, religious activities and even day-to-day activities such as choosing clothes and food. Despite the topicality and relevance of this matter, the number of studies developed to cover it, especially in Brazil, remains small⁴³43 Albuquerque A, Borba G, Dias T, Silva A, Cobucci B. Relato de experiência da aplicação da Tomada de Decisão Apoiada na Defensoria Pública do Distrito federal. In: Vasconcelos EM, editor. Novos Horizontes Em Saúde Mental. Análise de Conjuntura, Direitos Humanos e Protagonismo de Usuários(as) e Familiares. Vol. 1. 1ª ed. São Paulo: Hucitec Editora; 2021. p. 430-454..

Dementia can be classified as a clinical state in which a decline in cognitive function occurs, involving loss of memory and judgment, limitation of motor movements of greater complexity and limitation of certain intellectual functions⁴⁵45 Ash EL. What is Dementia? In: Foster C, Herring J, Doron I, editors. The Law and Ethics of Dementia. Oxford, Portland: Hart Publishing; 2014. p. 3-14.. Despite the impact on cognitive functions, mental competence to make decisions about certain areas of life is maintained. For this reason, people living with dementia cannot be automatically considered incapable of making decisions about certain aspects of their lives¹³13 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722.^,1414 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102..

According to the WHO¹¹11 World Health Organization (WHO). Demência [Internet]. 2021 [cited 2022 mar 3]. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia.
https://www.who.int/news-room/fact-sheet... , more than 55 million people live with dementia around the world, and Alzheimer`s disease is its most common manifestation. Every year, the number of new cases increases by around 10 million people. Dementia is the seventh largest cause of death among all diseases and is one of the main causes of dependency among elderly people worldwide¹¹11 World Health Organization (WHO). Demência [Internet]. 2021 [cited 2022 mar 3]. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia.
https://www.who.int/news-room/fact-sheet... . However, although dementia is not an inevitable consequence of aging, elderly people are constantly stigmatized through this lens of incapacity¹⁴14 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102. and, thus, suffer marginalization and infringement of their rights, under the aegis of paternalistic “protection” measures²2 Machado ILO, Garrafa V. Bioética, o envelhecimento no Brasil e o dever do Estado em garantir o respeito aos direitos fundamentais das pessoas idosas. Rev Direitos Garantias Fundam 2020; 21(1):79-106..

The WHO has fairly frequently published documents that address the need for respect for the human rights of elderly people, especially those living with dementia, and has signaled that a diagnosis of this disease should not cause restriction or loss of rights. Considering that legal provisions are not sufficient for ensuring rights for such individuals, there is a need for action at both social and countrywide level⁴⁶46 Dixon J, Laing J, Valentine C. A human rights approach to advocacy for people with dementia: A review of current provision in England and Wales. Dementia 2020; 19(2):221-236. towards developing support mechanisms for elderly people, their caregivers and their family members⁴⁷47 World Health Organization (WHO). Ensuring a Human Rights-Based Approach for People Living with Dementia [Internet]. [cited 2022 mar 13]. Available from: http://www.who.int/mental_health/neurology/dementia/en/WHO/MSD/MER/15.401.
http://www.who.int/mental_health/neurolo... .

Being designated as incapable of making decisions gives rise to a series of negative consequences for elderly people’s lives. It reduces self-esteem, trust, desire to live and engagement with one’s healthcare⁴⁸48 Paranhos DGAM. Análise da capacidade jurídica dos pacientes idosos no Brasil a partir do referencial dos Direitos Humanos. Cad Ibero-Am Direito Sanit 2020; 9(4):156-170.. For elderly people with dementia, the most important matter is that they should be valued⁴⁹49 Herring J. Losing It? Losing What? The Law and Dementia Articles Losing It? Losing What? The Law and Dementia. Child Family Law Quarterly 2009; 21(1):3-29.. They report that their greatest loss is not in relation to cognition but to how they are valued and their relationships with other people⁵⁰50 Steeman E, Godderis J, Grypdonck M, Bal N, Casterlé BD. Living with dementia from the perspective of older people: Is it a positive story? Aging Ment Health 2007; 11(2):119-130.. SDM brings important contributions regarding respect towards elderly people living with dementia, through protecting them and promoting their autonomy¹³13 Sabbata K. Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems. Front Psychiatry 2020; 11:571722.^,2020 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.^,2828 World Health Organization (WHO). Quality Rights Specialized training. Supported Decision-Making and Advance Planning. Course Guide [Internet]. 2019 [cited 2022 mar 12]. Available from: http://apps.who.int/bookorders.
http://apps.who.int/bookorders... ^,4949 Herring J. Losing It? Losing What? The Law and Dementia Articles Losing It? Losing What? The Law and Dementia. Child Family Law Quarterly 2009; 21(1):3-29., and enabling them to exercise contemporaneous relationships⁵¹51 Wright M. Dementia, Cognitive Transformation, and Supported Decision Making. Am J Bioet 2020; 20(8):88-90..

In this regard, in seeking greater effectiveness in applying the current Brazilian legislation regarding how elderly people are treated, it is opportune to introduce into this debate some bioethical, moral and structural propositions. These include the following: links between respect for personal autonomy and its counterpoint of paternalistic protection measures; development of specific mechanisms for providing support for elderly people living with dementia; establishment of family and social support networks; support mechanisms for difficult cases, such as the more advanced stages of dementia; and cultural change regarding discrimination against elderly people⁷7 Machado ILO. Curatela e Tomada de Decisão Apoiada (TDA) Com Relação a Pessoas Idosas No Brasil: Uma Análise Bioética. Brasília: Universidade de Brasília; 2022..

These matters should be addressed not only within the field of law but also through interlocution of different forms of knowledge¹⁴14 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102.. Intervention bioethics comes in at this point. This is an antisystemic conceptual line of epistemological reterritorialization of bioethics that was developed in Latin America with the aim of providing understanding for social contexts and their impact on human life²⁵25 Garrafa V. Inclusão social no contexto político da bioética. Rev Bras Bioet 2005; 1(2):22-32.^,5252 Garrafa V, Porto D. Intervention bioethics: a proposal for peripheral countries in a context of power end injustice. Bioethics 2003; 17(5-6):399-416.

53 Garrafa V, Cunha TR, Manchola-Castillo C. The teaching of global ethics: A theoretical proposal based on intervention bioethics. Interface (Botucatu) 2020; 24:e190029.^-5454 Garrafa V, Cruz E. Bioética de Intervención - Una agenda latinoamericana de re-territorialización epistemológica para la bioética. In: Pfeiffer ML, Manchola-Castillo C, editors. Fundamentar La Bioética: Conocimientos, Valores y Visiones Desde América Latina y El Caribe. Vol. 1. Universidad Nacional Autónoma de México/Unesco; 2022. p. 37-65.. Through this, applied ethics is proposed as a practical solution for human dilemmas. It presents tools that are pertinent to the present discussion, which involves the perspectives of liberation, emancipation and empowerment of social subjects¹⁵15 Garrafa V. Da bioética de princípios a uma bioética interventiva. Rev Bioetica 2005; 13(1):125-134.^,5454 Garrafa V, Cruz E. Bioética de Intervención - Una agenda latinoamericana de re-territorialización epistemológica para la bioética. In: Pfeiffer ML, Manchola-Castillo C, editors. Fundamentar La Bioética: Conocimientos, Valores y Visiones Desde América Latina y El Caribe. Vol. 1. Universidad Nacional Autónoma de México/Unesco; 2022. p. 37-65.. In this context, intervention bioethics prescribes that human life is permeated by social experience and that individuals are constructed through respect, otherness, valuation and development of the possibilities and abilities of each person, which flow together into the understanding that social connections form part of the exercising of autonomy¹⁵15 Garrafa V. Da bioética de princípios a uma bioética interventiva. Rev Bioetica 2005; 13(1):125-134.. At this point, it becomes fundamental to recognize that legal capacity is a human right and that the possibility of exercising this right implies respect for personal autonomy, through participative and supported decision-making¹⁴14 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102.^,1919 Shogren KA, Wehmeyer ML, Martinis J, Blanck P. Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Oxford: Oxford University Press; 2019..

Furthermore, starting from the concepts locked in through intervention bioethics, empowerment involves recognition of the power relationships that permeate human relationships, with highlighting of the need to unravel them so that respect for personal autonomy can be promoted, with taking into consideration the existential responsibility between human beings. This process aids in valuation of oneself and the other person, such that the individual figures as the central agent of his or her own history²⁵25 Garrafa V. Inclusão social no contexto político da bioética. Rev Bras Bioet 2005; 1(2):22-32..

To implement the SDM approach in Brazil, aimed towards elderly people living with dementia, there is a need to adopt a series of measures at countrywide, social and individual levels¹⁴14 Machado I, Garrafa V. Capacidades jurídica e decisional e os importantes aportes bioéticos para promoção da autonomia de pessoas idosas. Rev Redbioética Unesco 2021; 2(24):95-102.. A change of culture is fundamental, so as to place value on elderly people and on the notion that protection involves offering mechanisms for promoting personal autonomy²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018.. This is partly achieved through making information available and encouraging social engagement. At this point, discussions coming from intervention bioethics have been shown to be appropriate.

Social inclusion, in the sense developed here, presupposes a collective conscience regarding the need for respect for the dignity of elderly people. It comes from relationships of empathy and solidarity towards other people, especially those who are most vulnerable, with a commitment not to infringe the rights that are inherent to these people⁵⁴54 Garrafa V, Cruz E. Bioética de Intervención - Una agenda latinoamericana de re-territorialización epistemológica para la bioética. In: Pfeiffer ML, Manchola-Castillo C, editors. Fundamentar La Bioética: Conocimientos, Valores y Visiones Desde América Latina y El Caribe. Vol. 1. Universidad Nacional Autónoma de México/Unesco; 2022. p. 37-65.

55 Garrafa V, Soares SP. O princípio da solidariedade e cooperação na perspectiva bioética. Bioethikos 2013; 7(3):247-258.

56 Garrafa V, Soares SP. O princípio da solidariedade e cooperação na perspectiva bioética. Rev Centro Uni São Camilo Bioethikos 2013; 7(3):247-258.^-5757 Cunha T, Garrafa V. Vulnerability: A Key Principle for Global Bioethics? Cambridge Quarterly Healthcare Ethics 2016; 25(2):197-208.. It should be emphasized that personal autonomy is an element of fundamental importance regarding respect for human dignity²⁰20 Albuquerque A. Capacidade Jurídica e Direitos Humanos. 1ª ed. Rio de Janeiro: LUMEN JURIS; 2018. and other basic rights.

The SDM approach indicates that different support mechanisms can be aimed towards a variety of fields of life, which may include asset management, personal care and healthcare, among other matters. In the case of people living with dementia, the possibility of making decisions through support that is made available offers the opportunity to continue making choices and, to some degree, maintain control over important aspects of their lives, based on their own wishes and preferences. With regard to healthcare, for example, having the ability to make choices regarding the course of therapy generates engagement with the care provided and contributes to improvement of the patient’s state of health²²22 Donnelly M. Healthcare Decision-Making and the Law. Cambridge: Cambridge University Press; 2010.. In this regard, the presence of dementia does not signify the end of moral personality²³23 Donnelly M. Deciding in dementia: The possibilities and limits of supported decision-making. Int J Law Psychiatry. 2019; 66:101466..

Even though the Brazilian legislation limits the scope of use of the SDM instrument to people with disabilities, its use may in practice also extend to elderly people living with dementia. Use of this instrument, especially when based on the notions of empowerment, promotion of autonomy and social inclusion among elderly people, can bring in important contributions towards putting these individuals’ human rights into effect.

Final remarks

Use of the SDM process in Brazil is still at an embryonic stage. Strategies for refining and improving the process need to be identified, with assessment of the benefits and risks and adaptation of its use for the specific circumstances of elderly people living with dementia.

In this regard, an approach aimed strictly at legal experience has been shown to be insufficient for reaching the objective. Support from the field of bioethics may contribute to moving discussions forward, towards greater social participation among people living with dementia. This may also encourage formulation of public policies aimed towards adoption of a culture of support for elderly people, their caregivers and their families, and for society.

The paradigm implemented through the SDM approach indicates that there is a need for profound change regarding the way in which diseases and disabilities that affect mental abilities for decision-making are understood and dealt with, especially with regard to elderly people. Notions of empowerment and promotion of autonomy bring out the important reflection that strengthening of social ties and the support network are fundamental for development of mechanisms aimed towards changing the scenario of discrimination against people with dementia, starting from the notion that decision-making is a human right and that putting this into practice is an individual-level, country-level, legal, social and, above all, moral duty.

References

Acknowledgement

Research funding was obtained from the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES/MEC) through a doctoral bursary granted to the Programa de Pós-Graduação em Bioética/UNESCO Chair of Bioethics of the University of Brasília, DF, Brazil.

Publication Dates

History