Realizing Supported Decision-Making: What It Does—and Does Not—Require

This article refers to:

Supported Decision Making With People at the Margins of Autonomy

This article is referred to by:

Supported Decision Making with People at the Margins of Autonomy: Response to Commentaries

Supported decision-making, a process by which people who might otherwise be unable to make their own decisions do so with help from other people, is rapidly gaining attention as an alternative to guardianship and other forms of surrogate decision-making for people with cognitive disabilities. After exploring the potential benefits of supported decision-making for individuals with dynamic cognitive impairments, Peterson et al. (2021) argue that three steps are necessary to realize that potential: (1) identifying the domains where support is needed and desired by a decision-maker, (2) identifying the kinds of support needed and desired by the decision-maker, and (3) establishing a formal supported decision-making agreement (Peterson et al. 2021).

This commentary pushes back on this third step. It explains why a formal agreement, while often advantageous, is not essential to realizing supported decision-making. It then addresses a question left open by Peterson et al.: whether formal agreements, if executed, should have independent legal effect. After showing why these agreements should not have independent legal effect, the commentary suggests alternative legal interventions to help realize the potential of supported decision-making.

FORMALIZATION IS NOT ESSENTIAL

Supported decision-making relationships can be formal or informal. Supporters can informally help decision-makers obtain information, analyze options, and communicate decisions. Alternatively, a decision-maker and one or more supporters may enter into a formalized agreement explicitly setting forth the parameters of the supportive relationship.

While Peterson et al. acknowledge that supported decision-making relationships can be formal or informal, they suggest that implementing the concept requires formalization of supported decision-making agreements. Peterson et al. describe some of the benefits associated with explicit agreements, including that they can clarify expectations, provide an opportunity to plan for future decision-making challenges, and help third parties (including healthcare providers) “understand the parameters” of the relationship and feel more confident when decisions are made by an individual with marginal capacity. In addition to these benefits identified by Peterson et al. the process of formalizing a supported decision-making relationship can catalyze valuable dialogue between individuals and their supporters, including dialogue to identify the needs and desires that they describe as necessary to identify.

Despite these benefits, supported decision-making does not require formalization, nor should formal supported decision-making be assumed to be superior to informal supported decision-making. Soliciting and receiving informal decision-making support is a common human experience, and research has yet to show that formal supported decision-making agreements enhance the quality of established informal supported decision-making relationships.

The available evidence suggesting that formalization benefits decision-makers is not only limited and anecdotal, but is based almost exclusively on the experience of young and middle-aged adults with stable cognitive disabilities, such as intellectual disabilities (Glen 2020). Despite growing enthusiasm for using formalized supported decision-making agreements with persons with dementia and other progressive disorders (e.g., Peterson et al. 2021; Wright 2020), there is not yet research showing that formalized agreements increase the likelihood that such individuals are able to effectuate their will and preferences, or are satisfied with decision-making processes or outcomes. There is reason, moreover, to suspect that formalized supported decision-making agreements may be a poor fit for those with progressive cognitive conditions. For individuals with stable cognitive disabilities, a key benefit of formalized supported decision-making is that it provides an opportunity to teach decision-making skills and create new systems to enable stable, long-term support (Glen 2020). For individuals with progressive cognitive decline, to be successful, supported decision-making will need to help individuals as they adapt their decision-making processes to changes in abilities. Formalization runs the risk of ossifying systems instead of allowing them to evolve to changing circumstances.

FORMALIZED AGREEMENTS SHOULD NOT HAVE INDEPENDENT LEGAL EFFECT

In their article, Peterson et al. leave open the question of whether legal recognition is necessary for realizing supported decision-making, although they suggest that it might be. This suggestion is consistent with the common assumption that realizing supported decision-making requires legal recognition of supported decision-making agreements. This assumption has helped spark a proliferation of state-level statutes that purport to enable supported decision-making agreements by giving those agreements independent legal effect. The first was enacted in Texas in 2015, and ten states and the District of Columbia had followed suit as of August 2021.¹

Yet supported decision-making agreements do not need legal status to be effective. Individuals are free to enter into supported decision-making agreements without any separate legislative authorization. In fact, the right to seek advice from others is the type of right that should be seen as protected by the First Amendment of the U.S. Constitution and its guarantee of freedom of speech and association. And the benefits of supported decision-making can accrue without any legal intervention. Individuals can use the process of documenting the relationship to catalyze dialogue and clarify expectations regardless of whether the resulting document has independent legal effect. Likewise, the agreement can be shared with third parties, such as healthcare providers, to communicate the parameters of support without the agreement itself having legal status. Even more importantly, supported decision-making agreements can help individuals avoid guardianship—one of the key goals of supported decision-making proponents—even if they have no independent legal effect. Courts increasingly find guardianship improper where individuals are able to make decisions for themselves with support even when the support is not pursuant to a legally recognized agreement (Kohn 2021).

Giving supported decision-making agreements independent legal effect is not only unnecessary, it can have serious disadvantages. As I explored at length in the Harvard Journal on Legislation, state statutes enacted to date that give legal effect to supported decision-making agreements provide individuals with disabilities no substantial new rights. Rather, they grant rights to supporters and to third parties who rely on the agreements. For example, common provisions include those that protect supporters from liability, enable supporters to require third parties to treat statements made by the supporter as if they were made by the individual with a disability, and immunize from liability third parties who unreasonably rely on supporters’ statements. Thus, rather than expanding the rights of individuals with disabilities, such statutes effectively limit their rights by reducing the extent to which they can hold others accountable for wrongs done to them. In addition, such statutes often include provisions that directly limit the rights of individuals seeking support, such as provisions that limit their ability to revoke the agreements or to avoid public disclosure of sensitive information (Kohn 2021).

Notably, if supported decision-making agreements do not have independent legal effect, then there is no need to determine the threshold level of capacity required to enter into such an agreement. This obviates the need for some of the research recommended by Peterson et al.

OTHER LEGAL REFORMS COULD HELP REALIZE THE POTENTIAL OF SUPPORTED DECISION-MAKING

Although legal recognition of supported decision-making agreements is not necessary to realize supported decision-making, new laws could play an important role in facilitating supported decision-making. Perhaps most importantly, states could facilitate the use of supported decision-making as an alternative to guardianship by amending their guardianship laws to prohibit courts from imposing a guardianship if supported decision-making would meet an individual’s identified needs. For example, states could adopt language from the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act (“UGCOPAA”) which prohibits courts from appointing a guardian for an adult unless the court finds by clear and convincing evidence that the adult “lacks the ability to meet essential requirements for physical health, safety, or self-care because the respondent is unable to receive and evaluate information or make or communicate decisions, even with appropriate supportive services, technological assistance, or supported decision making” (UGCOPAA § 301(a)(1)(A), emphasis added).

States could further amend their guardianship laws to increase the likelihood that courts will give full consideration to supported decision-making possibilities when determining whether guardianship is in order. For example, they could require—as UGCOPAA provides—that individuals petitioning for guardianship give notice to persons providing decision-making support to the person alleged to need a guardian (UGCOPAA §§ 302(b); 402(b)). Such a requirement would help ensure that the court is aware of existing supporters, and increase the likelihood that supporters are able to assist with defending against a guardianship petition.

In addition to reforming their guardianship statutes, states could adopt legislation lowering barriers to the use of supported decision-making. For example, states could fund public systems for providing support—thus facilitating supported decision-making for individuals who lack trusted others to provide support (Kohn 2021). Similarly, states could fund training for individuals in supported decision-making relationships, or those interested in entering into them (Kohn 2021). In addition, states could statutorily enable what I have previously termed “personal information disclosure authorizations” that would allow individuals to grant decision-making supporters the ability to access entire categories of personal information (Kohn 2021). This could allow supporters to help individuals access and analyze decision-relevant information without the individual needing to engage in the potentially frustrating and time-consuming process of specifically granting permission to access each source of personal information. For example, individuals seeking help with financial decision-making could authorize supporters to access financial information, and those seeking help with healthcare decisions could authorize broad access to health records when making healthcare ones).

FUNDING

The author(s) reported there is no funding associated with the work featured in this article.

Notes

1 See ALASKA STAT. ANN. § 13.56.010 et seq. (West 2021); COLO. REV. STAT. ANN. § 15-14-801 et seq. (West 2021); DEL. CODE. ANN. tit. 16, §§ 9401A et seq. (West 2021); D.C. CODE ANN. § 7-2131 et seq. (West 2021); IND. CODE ANN. § 29-3-14-1 et seq. (West 2021); LA. STAT. ANN. § 4261.101 et seq. (West 2021); NEV. REV. STAT. ANN. § 162C.010 et seq. (West 2021); N.D. CENT. CODE ANN. § 30.1-36-01 et seq. (West 2021); R.I. GEN. LAWS ANN. § 42-66.13-1 et seq. (West 2021); TEX. EST. CODE ANN. § 1357.001 et seq. (West 2021); WIS. STAT. ANN. § 52.01 et seq. (West 2021).