Supported Decision Making With People at the Margins of Autonomy

Abstract

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research.

Keywords:

• Disability
• chronic conditions
• rehabilitation
• decision making
• neurodegenerative disease
• aging
• neurology
• health policy

This article is referred to by:

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

Supported Decision Making: A Concept at the Margins vs. Center of Autonomy?

The Doctrine of Informed Consent Doesn’t Need Modification for Supported Decision Making

Integrating Supported Decision-Making into the Clinical Research Process

Supported Decision-Making for People with Dementia Should Focus on Their Values

Disability, Aging, and the Importance of Recognizing Social Supports in Medical Decision Making

Reconciling Supported Decision Making with Shared Decision Making in the Context of Potential Vulnerability

Healthcare Decisions Are Always Supported Decisions

Implementing Ethical and Legal Supported Decision Making: Some Unresolved Issues

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

Supported Decisions as the Patient’s Own?

Combining Supported Decision-Making with Competence Assessment: A Way to Protect Persons with Impaired Decision-Making Capacity against Undue Influence

Evaluating Tradeoffs between Autonomy and Wellbeing in Supported Decision Making

INTRODUCTION

Jack, a successful oncologist, has developed mild cognitive impairment (MCI)—a measurable decline in cognitive abilities that is more than would be expected in normal aging and causes inefficiency in performing daily activities. Jack’s physician attributes the MCI to Alzheimer’s disease and has told Jack that it will likely progress to a dementia level of impairment over the next 3 to 4 years. Presently, Jack is capable of managing his affairs independently, but his physician warns that, as his cognition and function decline, he will become increasingly reliant on others. Jack’s husband recently passed away. Jack has no adult children and is estranged from his biological siblings, but he has many trusted friends to whom he can—and does—turn for help. These friends respect Jack’s desire to remain independent while also recognizing his vulnerability. How can Jack and his friends work together so that he retains his independence but also enjoys sufficient protections?

Decision-making capacity is the task-specific ability to understand and appreciate relevant information, reason about options, and communicate a choice (Appelbaum 2007; Buchanan and Brock 1990; Grisso and Appelbaum 1998). Cognitive impairments place people on a spectrum of decision-making capacity. At one extreme, individuals have full capacity; at the other, they are completely incapacitated. Many individuals have cognitive impairments that are static, meaning that their cognition and function do not change significantly over time. Their place on the spectrum of capacity is relatively fixed. Other individuals, in contrast, have impairments that are dynamic. Individuals with dynamic impairments transition between capacity and incapacity, and for some, their overall trajectory will be toward incapacity—as in the case of persons with neurodegenerative diseases such as Alzheimer’s disease. For others, their trajectory will be toward capacity—as in the case of recovery from stroke or traumatic brain injury.

Jack is moving along this spectrum of capacity. In time, his ability to make decisions independently will be “marginal.” As this occurs it will become increasingly unclear whether he retains decision-making capacity or has diminished decision-making capacity (Marson et al. 1995; Okonkwo et al. 2007). Jack is at the margins of autonomy, but we do not want him to be marginalized when decisions are made about his life.

Here we argue that the ideal decision-making model for individuals like Jack is supported decision making. “Supported decision making” means decision making in which an adult with impaired capacity (the “beneficiary”) enters freely into an agreement with a closely trusted person or persons (the “supporter(s)”) who assist the beneficiary in exercising and enhancing self-determination (American Bar Association 2017). Implementation of supported decision making involves crafting an agreement between the beneficiary and supporter(s) that identifies the decision-making domains in which the beneficiary seeks assistance as well as the kinds of assistance needed and desired. The beneficiary and supporter may choose to keep matters informal, or they can then sign a document solemnizing their agreement, and the beneficiary “retains the right to make decisions and have them recognized by law” (Glen 2012, 96; Theodorou 2018, 975). Either way, these agreements recognize that beneficiaries need support in making decisions and that certain people will support them. Jack’s supported decision-making agreement could—among other things—ask a supporter to join him at important medical appointments, take notes for him, and discuss treatment options with him. But Jack would make the final choices about his health care. A formal document outlining the supported decision-making agreement would allow Jack’s doctors to understand the parameters of his supportive relationship and feel confident accepting his decisions.

Supported decision making has been discussed in the philosophical and disability-rights literature as an alternative to guardianship or similar surrogate decision-making frameworks, particularly for adults with static intellectual and developmental impairments (Francis 2011; Francis & Silvers 2007; Glen 2015; Silvers and Francis 2009). Additionally, there is growing interest in, and commitment to, supported decision making among courts, legislatures, legal practitioners, legal academics, and advocacy groups in the United States and abroad (Arstein-Kerslake et al. 2017; Davidson et al. 2015; Glen 2012; Kohn, Blumenthal, and Campbell 2012; Wright 2019). Yet, little work has been done within bioethics to consider the value and challenges of supported decision making for people with dynamic impairments ( but see recent work in Menon et al. 2020; Wright 2020 ). Here, we argue that, while there is a role for guardianship and similar surrogate decision-making frameworks, supported decision making will often be more appropriate for individuals with dynamic impairments, particularly persons with MCI, estimated to be 15% of the U.S. older adult population (Petersen et al. 2010). We frame our discussion around supported decision making for people like Jack who occupy the margins of autonomy. Many of our claims are, however, relevant to the broader project of supported decision making.

This essay has four sections. First, we argue that, although guardianship and similar surrogate decision-making frameworks should be viewed as a last resort for people with dynamic impairments, supported decision making and guardianship are complementary. We contrast this position with the more radical view that guardianship for people with cognitive disabilities ought to be abolished, as articulated in the first General Comment on Article 12 of the U.N. Convention on the Rights of Persons with Disabilities (CRPD) (United Nations 2006, 2014). Second, we outline the conceptual foundation of supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions for implementing supported decision making: identifying domains for support; identifying kinds of supports; and formalizing an agreement. Finally, we identify challenges for the project of supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. Our analysis seeks to provide an integrative framework of the ethical, legal, and medical considerations for supported decision making, as these considerations are often interwoven in practice.

GUARDIANSHIP—A LAST RESORT FOR PEOPLE WITH DYNAMIC IMPAIRMENTS

The principle of respect for persons requires that we treat people as autonomous agents. Autonomy is typically understood as independence and self-rule, or self-determination, and figures centrally in bioethics and law. It is well established ethically and legally that individuals with decision-making capacity are empowered, autonomous decision makers. Clinicians and researchers must seek their informed consent for medical care or research participation. Failure to do so would violate their autonomy. Not all individuals are, however, capable of providing consent. Lack of maturity, illness, or impairment may leave some individuals dependent on others to make decisions for them. It therefore follows from the principle of respect for persons that we are also required to protect individuals who lack decision-making capacity. This is, for instance, why clinicians caring for legal minors generally must seek permission from a parent before commencing treatment.

The principle of respect for persons is designed to confer protection to autonomous persons and also to those with diminished autonomy (National Commission 1978). “Respect for persons” echoes but is decidedly not the same as “respect for autonomy,” which is understood to apply only to those capable of acting autonomously (Beauchamp and Childress 2019). By contrast, “respect for persons” applies to all people. How we respect a person in practice will, however, depend on an individual’s level of autonomy (Lysaught 2004).

An individual with marginal capacity presents a particular challenge for realizing the principle of respect for persons. People who care for a person with marginal capacity, such as friends or adult children, must strike a thoughtful balance between allowing the person to exercise her autonomy and protecting the person in light of her vulnerability. A person with marginal capacity is both vulnerable to her own potentially harmful decisions and vulnerable to having her autonomy violated. A balance will need to be struck repeatedly, as vulnerability shifts with both the decision-making context and also the progression of the dynamic impairment.

A possible solution to this balancing challenge is to appoint a guardian or similar legal representative. In the United States, guardianship is defined by state law and, as a result, variable. Still, it is possible to outline its general contours. A guardian is appointed by a court for a person (the “ward”) who is legally determined to lack the ability to make decisions autonomously. In a limited guardianship, the guardian controls specified decision-making domains, such as finances or medical care, while the ward retains control of decisions in others. In a plenary or full guardianship, the guardian assumes decision-making authority across all domains of the ward’s life. Ideally, the guardian seeks the ward’s input whenever possible, but decision-making authority rests with the guardian (Dinerstein 2012). Guardianships can be temporary or permanent. The court-appointed guardian may be a relative, friend, or professional. While guardianship laws vary significantly, they share a common ethical feature: they limit the ward’s independence for the sake of her protection.

Guardianships fall within the broader category of surrogate decision-making regimes, mechanisms in which a surrogate is authorized to make decisions on behalf of a person with diminished capacity. A surrogate is generally required to follow a substituted judgment standard. Substituted judgment is designed to respect a person’s autonomy by approximating the decisions she would have made if she were able. However, evidence suggests surrogates’ predictive accuracy is poor (Shalowitz, Garret-Mayer, and Wendler 2006). Alternatively, surrogates may also use a best interests standard, asking what a reasonable person would want rather than what this person would want in particular circumstances.

Legal mechanisms such as durable powers of attorney, health care proxies, or other modalities can provide targeted assistance for adults affected by dynamic impairments and may “avoid the stigma and indignity” of guardianship (Dinerstein 2012, 29). But many people do not have these legal mechanisms in place, and, after the onset of cognitive impairment, they may lack the requisite capacity to validly express their wishes.

Moreover, even if these legal mechanisms are in place, they cover specific categories of decisions such as finances and health. Life requires many important decisions—for example, related to personal matters or living arrangements—that such documents do not address. In these circumstances, a guardian may be deemed appropriate and, if functioning as intended, should ensure that an individual with dynamic impairments is taken care of well. Nevertheless, drawing together the threads of law, medicine, and ethics, there are several reasons why appointment of a guardian for people with dynamic impairments may be inappropriate.

First, appointing a guardian for someone with dynamic impairments may conflate the individual’s decision-making capacity and legally determined competency (Fins and Pohl 2016; Ganzini et al. 2005). Decision-making capacity is dimensional; a person can be more or less decisionally capable in different areas of her life or at different times. Competence, on the other hand, is typically understood as discrete; an individual is adjudged competent to make her own decisions or not. Many states have modified their guardianship laws to recognize that some individuals may have capacity—or be competent—in some domains but not others by allowing for limited guardianships and distinguishing between kinds of capacity, including financial capacity, testamentary capacity, and the capacity to enter into contracts. Nevertheless, guardianship remains a relatively blunt instrument that can result in over- or under-protection. Adjudging people with marginal capacity as competent or incompetent will invariably lead to mistakes. Some individuals will have their decision-making authority unjustly restricted while others will not receive adequate protections. Decision-making capacity in people with dynamic impairments also varies with time. A legal judgment of competence made at one point in time—even if initially correct—might not track ongoing changes in cognitive and functional status. A person may be incompetent and need a guardian after a traumatic brain injury, for example, but as recovery progresses, guardianship may no longer appropriately balance the ethical duties urged by the principle of respect for persons. Furthermore, because guardianship is often seen as a “one-way ticket” to dependency, legal termination of guardianship and reinstatement of rights is often difficult (National Council on Disability 2019, 72).

Second, for some people with dynamic impairments, guardianship could be anti-therapeutic. Guardianship is intended to protect wards, but it could exacerbate, rather than alleviate, cognitive changes in people with dynamic impairments through stereotyped threat and self-stigma. For example, people with intellectual disabilities who have been appointed a guardian report feeling isolated (cf. Kohn, Blumenthal, and Campbell 2012; Salzman 2010; Wright 2010). Being a ward can also signify a particular social status to laypeople, which can lead to stigmatization (Sherman 1980). Some wards might feel disenfranchized if they are unable to make decisions for themselves. People observing the guardian-ward relationship from the “outside” might not regard the ward as part of the decision-making process and behave in ways that exacerbate marginalization, such as not acknowledging a ward’s presence during discussions.

Conversely, wards may feel “more confident and assertive” after a guardianship ends (National Council on Disability 2019, 74). Independent decision making could also have cognitive benefits for people with dynamic impairments. Individuals with acquired brain injury have shown improvements in social cognition when encouraged to socialize and problem solve (Dahlberg et al. 2007). Similarly, older adults can reduce their risk of developing dementia by participating in socially and cognitively engaging activities (Verghese et al. 2003). Guardianship, of course, does not necessarily lead to negative outcomes. A guardian who acts with care and consideration for the ward could foster greater social engagement and therapeutic benefit, but this requires diligence on the part of the guardian. Absent such diligence, positive outcomes might not be realized.

Third, appointing a guardian for people with dynamic impairments without due consideration of their decision-making abilities may be inconsistent with the U.S. legal doctrine of the least restrictive alternative. According to this doctrine, the state cannot deprive individuals of their rights and personal freedoms to a greater extent than is necessary to achieve its legitimate goals. In the context of guardianship or other surrogate decision-making regimes, the doctrine demands that “all alternatives that might enable [individuals] to make their own decisions about personal and/or financial matters be considered and exhausted prior to the imposition of the ‘last resort’ of guardianship” (American Bar Association 2017, 4). The doctrine can thus be understood as a legal corollary to the principle of respect for persons. Just as denying an individual the freedom to act without compelling reasons would show a lack of respect for her personhood, imposing guardianship upon a ward in the absence of evidence that guardianship is necessary would violate her legal rights. Applying the doctrine of the least restrictive alternative might also hold practical benefits. There is an increasing worry that, as the U.S. population ages, state courts will be unable to handle the influx of guardianship petitions, which could render them impractical (Theodorou 2018). Treating guardianship as a last resort could reduce the burden on courts.

Fourth, appointing a guardian for people with dynamic impairments may be inconsistent with broadly accepted policy statements on disability rights. The CRPD (United Nations 2006), for example, emphasizes the “importance for persons with disabilities of their individual autonomy, including the freedom to make their own choices.” The Convention entered into force in 2008 and has been ratified by 181 countries. President Obama signed the CRPD in July 2009, and although the U.S. Senate has failed to ratify it, it is nevertheless influential in U.S. disability rights discussions. Article 12 of the CRPD reaffirms the right of people with cognitive disabilities to be recognized as equals before the law and is widely regarded as a touchstone for supported decision making (Devi 2013; Dinerstein 2012; Gooding 2013; Kohn, Blumenthal, and Campbell 2012). Article 12 stipulates that “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity” and requires that “measures related to the exercise of legal capacity respect the rights, will, and preferences of the person” and are “proportional and tailored to the person” (United Nations 2006). This proportionality requirement echoes both the doctrine of the least restrictive alternative and the principle of respect for persons. The underlying premise is that people with cognitive disabilities should not be presumed to lack capacity to exercise their rights.

These four arguments provide compelling and interrelated ethical, legal, and medical reasons to be skeptical of guardianship for people with dynamic impairments. But what role, if any, should guardianship continue to play?

A radical response is that guardianship for people with cognitive disabilities ought to be relegated to the dustbin of history. In the first General Comment on Article 12, the U.N. Committee on the Rights of Persons with Disabilities argued that “persons with disabilities have been denied their right to legal capacity in many areas in a discriminatory manner under substituted decision making regimes such as guardianship [and] conservatorship” (United Nations 2014). The General Comment also asserts that “these practices must be abolished in order to ensure that full legal capacity is restored to persons with disabilities on an equal basis with others” (emphasis added). Note that the CRPD doesn’t distinguish between static and dynamic impairments. Thus, the General Comment suggests that guardianship should be abolished in all instances of disability.

We disagree with the wholesale abolition of guardianship for people with cognitive disabilities (Largent & Peterson, Forthcoming). First, abolition is not feasible. Many people with cognitive disabilities would doubtlessly prefer and benefit from a less restrictive alternative to guardianship. But other individuals have impairments so profound that—even with the supports called for by Article 12—they clearly and consistently lack the capacity to make their own decisions. This may occur, for example, when a condition that causes dynamic impairments reaches its terminus. Jack, our oncologist with MCI, may need others to make decisions for him as his Alzheimer’s disease advances. It may also occur with certain static impairments. A patient in a vegetative state cannot make decisions for herself. It is incoherent to suggest that there is a less restrictive alternative to guardianship for her.

Second, the abolition of guardianship for people with cognitive disabilities would be inconsistent with the principle of respect for persons. As we argued above, the principle directs us to faithfully balance promotion of autonomy with protection for people with diminished autonomy. Defaulting to guardianship or other forms of surrogate decision making for people with cognitive disabilities does not strike an appropriate balance, for it unjustly tips the scale in favor of protection. But abolishing guardianship for people with cognitive disabilities does not strike an appropriate balance either. Abolition tips the scale in favor of promoting autonomy at the expense of potentially necessary protections. Achieving the right balance, although a challenge, should be our goal.

SUPPORTED DECISION MAKING—A LESS RESTRICTIVE ALTERNATIVE

Guardianship and other surrogate decision-making regimes should be available for individuals who clearly and consistently lack capacity. But for the ethical, legal, and medical reasons outlined above, such regimes should also be a last resort for people with dynamic impairments. They should only be used when a person’s cognition is so impaired that, even with the provision of supports, she is unable to make decisions on her own.

A less restrictive alternative to guardianship and other surrogate decision-making regimes is supported decision making. Supported decision making is a model of decision making in which a beneficiary—an adult with marginal capacity—enters freely into an agreement with a closely trusted person or personal network of supporters who agree to assist her in making her own informed decisions (American Bar Association 2017; Glen 2012; Kohn, Blumenthal, and Campbell 2012).

Over the last decade, supported decision making has gained traction in U.S. law as an alternative to guardianship and other surrogate decision-making regimes. In 2015, Texas became the first state to statutorily recognize supported decision making as an alternative to guardianship for people who need assistance in decision making but are not entirely incapacitated (Texas Estate Code §1357.0525 2015). Texas allows legal adults with cognitive or intellectual disabilities to enter into an agreement with a competent adult, which ensures that the beneficiary is enabled and supported to make decisions regarding living situations, medical care, and work. This written plan can then be shared with others, such as clinicians, who shall rely on it and shall not be held liable for actions taken in good faith. According to the Texas state court system, “[t]he exploration of alternatives to guardianship has reduced the number of guardianship applications filed in Texas, a trend that was not occurring prior to the reforms” (Texas Guardianship Abuse, Fraud, and Exploitation Deterrence Program 2019).

Other states have followed Texas or are currently considering similar legislation. In 2016, Delaware became the second state to recognize supported decision-making agreements. In 2018, Alaska, the District of Columbia, and Wisconsin also recognized supported decision making. Indiana, North Dakota, Nevada, and Rhode Island passed supported decision-making agreement laws in 2019. (A continually updated database on U.S. supported decision-making legislation is available at: http://www.supporteddecisionmaking.org/states). Meanwhile, courts in various states have issued opinions recognizing supported decision making as a less restrictive alternative to guardianship (see, e.g., Hatch, Crane, and Martinis 2015; Ross et al. v. Hatch 2013).

The 2017 Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act (UGCOPAA)—written and approved by the Uniform Law Commission, which provides states with quality, nonpartisan draft legislation—also urges that guardians should not be appointed unless there is a finding by clear and convincing evidence that an individual “is unable to receive or evaluate information or make or communicate decisions, even with appropriate supportive services, technological assistance, or supported decision making.” (National Conference of Commissioners on Uniform State Laws 2017, §301). Both Maine and Washington have adopted the UGCOPAA, while New Mexico has adopted portions of it (American Bar Association 2018).

These legal developments show that, across the United States, there is growing interest in and commitment to supported decision making. Yet the conceptual foundations for supported decision making for people with dynamic impairments have not been thoroughly explored. In this section, we engage two frameworks: the social model of disability and relational autonomy. These frameworks offer crucial insights into the logic of supported decision making.

Supported Decision Making and the Social Model of Disability

Supported decision making for people with dynamic impairments follows from the social model of disability. The social model holds that disability is not inherent to a person but emerges from an interplay between the person’s capabilities and environment (Shakespeare 2017; Silvers 2000; Walker et al. 2011; Wendell 1989). An adult with a mobility impairment who cannot take stairs but wants to get into a building with steps, or a child who is visually impaired but wants to read a book only available in print, are not intrinsically disabled. Rather, their disabilities are derivative from a mismatch between their physical capabilities and the accessibility of the building or the book, respectively. Where such capability-environment mismatches occur, accommodations like ramps and braille books can address socially constructed barriers, enabling people with impairments to partake in the same rights and freedoms as others.

The social model of disability is an alternative to the medical model of disability, according to which disability is an intrinsic property of a person, and medical intervention (rather than environmental modification) is the appropriate way to address it (Goering 2002; Silvers 1998). It is generally acknowledged that there are limits to the social model of disability—even if all social barriers are removed, some people will remain disadvantaged. A person who is comatose, for example, cannot enjoy the same public goods and freedoms as others no matter how diligent we are in rearranging the environment. Nevertheless, most people with impairments can still benefit substantially through environmental accommodations.

The social model of disability lays bare how socially constructed barriers needlessly exclude people with impairments. We install ramps, provide sign language interpreters, and accommodate service animals—among other modes of inclusion—to mitigate or redress discriminatory barriers to public goods. The same reasoning can be applied to decision making. Just as ramps, interpreters, and service animals allow people with physical impairments to access public goods, accommodations in decision making can allow people with cognitive impairments to make decisions regarding their own lives. If we understand barriers to independent decision making as (at least, in part) socially constructed, supported decision making can be understood as a type of environmental accommodation. Supports can mitigate or redress the mismatch between the individual’s cognitive capabilities and environment. For example, an individual with a developmental disability who wants to live independently but has difficulty managing her budget may need assistance with banking and making financial decisions.

That environmental accommodations might facilitate the exercise of autonomy by people with dynamic impairments implies that cognition and function are not strictly “in” one’s head. Instead, aspects of cognition and function can be offloaded onto one’s environment. If an individual in the early stages of dementia compensates for her memory loss by using a notebook or smart device to record reminders or to keep track of appointments (Brown et al. 2019), her mental states can be regarded as partially offloaded onto these mentally external objects. The notebook and smart device might even be construed as cognitive prostheses (cf. Aas and Wasserman 2016). Similarly, a supporter’s mental processes can play the same sort of role in compensating for impairments: the supporter also functions “as a sort of prosthesis that permits [the beneficiary] to be independent” (Kittay 2011, 50).

The concept of cognitive prostheses for people with dynamic impairments can be compared to the broadly influential extended mind thesis (Francis & Silvers 2007; Clark and Chalmers 1998). The extended mind thesis holds that beliefs, memories, and desires can “be constituted partly by features of the environment, when those features play the right sort of role in driving cognitive processes” (Clark and Chalmers 1998, 12). Importantly, the extended mind thesis does not exclude other people from serving as cognitive prostheses. This is described as socially extended cognition, or as two people becoming a coupled system. As we shall see below, however, offloading one’s cognitive faculties onto another person’s cognition could be a double-edged sword. Socially extended cognition offers a powerful account of the underlying metaphysics of supported decision making, but it also raises complicated ethical questions about the supporter’s influence on the beneficiary (cf. Levy 2007). A notebook used to compensate for a memory impairment is cognitively inert: it has no beliefs to impose on the person who uses it. A supporter, by contrast, is not cognitively inert and might influence the beneficiary in positive or negative ways.

Supported Decision Making and Relational Autonomy

A second argument for supported decision making for people with dynamic impairments is found in critiques of overly individualistic conceptions of autonomy. People with cognitive impairments are often marginalized in decision making because they are believed to lack the requisite capacities to make decisions as discrete individuals. According to a standard definition, individual autonomy involves:

[b]eing able to value, being able to reason, being able to resist impulses, being able to imagine an ordered life, being able to order one’s life, being able to put one’s plans into practice, being able to participate in moral deliberation of an idealized kind, and being politically free (Francis 2011, 202).

This definition highlights the connection between autonomy, rational capacities, and the individual. An individual who has these rational capacities is autonomous (Faden and Beauchamp 1986). People who lack these capacities are, by contrast, generally presumed to be unable to make decisions as individuals and—by extension—lack autonomy.

There are, however, good reasons to be skeptical of highly individualistic conceptions of autonomy. In practice, even people with unimpaired decision-making capacity seldom deliberate and reach decisions wholly independently. Rather, they engage with family and friends or consult with experts. Arguably, such engagement enhances rather than diminishes rational decision making, as trusting in and consulting with others can improve deliberative processes. One might claim that, when we rely on others, the resulting decisions should not be regarded as genuinely autonomous. Such a claim would allow us to acknowledge the value of collaborative decision making while still maintaining the plausibility of an individualistic conception of autonomy. We, however, reject it.

Relational accounts of autonomy—in contrast with more individualistic conceptions—recognize that autonomy is always and already bound up in our relationships with others. We are individual decision makers who have agency, but we also deliberate and decide in a rich social context (Christman 2004; MacKenzie 2008; Mackenzie and Stoljar 2000; Westlund 2009). Consider how couples make decisions (Osamor and Grady 2018). Their decision making occurs within a complex interdependent relationship. This relationship does not diminish the autonomy of the individuals who comprise the couple. Rather, consistent with socially extended cognition, discussed above, their interdependence grounds and informs their respective decision-making processes. According to relational views, the delegation of some or all decision-making authority to another does not imply the loss of autonomy. Delegating—even deferring—can instead be an affirmation of autonomous choice (Kukla 2005).

The insights of both the social model of disability and relational autonomy suggest that the barriers to autonomous decision making encountered by persons with dynamic impairments can—and should—be accommodated by a beneficiary’s interdependent relationship with her supporter(s). The autonomy of the person with dynamic impairments emerges from this relationship because she offloads aspects of her cognition onto trusted others. We acknowledge that the kind of autonomy that emerges from supported decision making notably differs from highly individualistic conceptions of autonomy. Relational autonomy and the social model of disability suggest that supporters and beneficiaries ought to be regarded as decision-making units, whereas individualistic conceptions of autonomy do not. Crucially, however, relational autonomy and the social model of disability do not diminish the importance of rational capacities and agency. As in individualistic conceptions of autonomy, rational capacities and agency still play a central role in decision making. The difference is the acceptance that rational capacities can be distributed across multiple people. Autonomy is therefore not necessarily tied to discrete individuals but instead can be grounded in a relationship (or relationships) between a beneficiary and her supporters. This relationship not only promotes the autonomy of the beneficiary, it also creates an environment in which her agency is not lost, and her interests are protected, if necessary. These conceptual frameworks illuminate why supported decision making, unlike guardianship and other surrogate decision-making regimes, promotes the agential authority of the individual with diminished capacity. Relational autonomy and the social model of disability place beneficiaries at the center of complex decision-making networks designed to enhance their agency, support their extant rational capacities, and prevent unjust curtailment of autonomy.

REALIZING SUPPORTED DECISION MAKING

Although supported decision making has robust conceptual foundations, its implementation varies across U.S. jurisdictions and abroad (see, e.g., variation in supported decision-making legislation documented here: http://www.supporteddecisionmaking.org/states). This variation could lead to confusion when developing new supported decision-making legislation or refining current laws in light of new insights in bioethics and disability scholarship. To address this, we propose a three-step model for implementation. Our model is not intended to supplant current supported decision-making tools (American Bar Association 2016), research strategies (Harding and Taşcıoğlu 2018; Jones et al. 2018; Shogren et al. 2017a, 2017b), or to endorse a particular legal formulation. Rather, the model identifies three essential characteristics of formal supported decision making: (1) identifying the domains of life in which support is needed and desired (or will be needed and desired); (2) identifying the kinds of support that are needed and desired; and (3) establishing a formal supported decision-making agreement (Table 1).

Table 1. Three-step model for implementing supported decision making.

Step	Description	Examples
1. Identify domains where support is needed and desired	Ascertain the nature and severity of a beneficiary’s impairments, their impact on decisional abilities, and the domains of life in which a beneficiary needs and desires support with decision making	Health care decision making Financial decision making Managing benefits (e.g., health care or social security) Daily activities (e.g., buying groceries, securing housing)
2. Identify kinds of support that are (or will be) needed and desired	Ascertain the kinds of supports a beneficiary needs and desires to address current or future decision-making challenges	Communication and interpretation of information Developing a life vision Developing and maintaining a network of supportive people or technologies
3. Establish a supported decision-making agreement	Establish a formal agreement between the beneficiary and the supporter(s); maintain ongoing monitoring of the agreement	Texas’s supported decision-making model agreements ABA PRACTICAL tool agreements for supported decision making

Step 1: Identify the Domains of Life in Which Support Is Needed and Desired

Supported decision making will look different for different beneficiaries and supporters. And it should. The key ethical insight of this first step is that supported decision making responds to the beneficiary’s needs, cognitive impairments, and desires. This approach offers several advantages to guardianship or other surrogate decision-making regimes. First, beginning the process with the beneficiary soliciting and the supporter agreeing to provide assistance affirms the beneficiary’s agency. Although autonomy is always and already distributed across the beneficiary and supporter(s) in the ways described above, the supporter’s act of acknowledging the domains over which the beneficiary needs and desires help—or does not—ensures that her agency is not lost in the supported decision-making relationship.

Additionally, beginning the process of supported decision making by exploring where help is wanted avoids the encroachment of support into domains of life where it is unnecessary or unwelcomed. Although limited guardianship also seeks to avoid encroachment, it can lack sufficient nuance for reasons previously discussed. Moreover, Step 1 conceptually distinguishes supported decision making from guardianship: whereas the former emphasizes what beneficiaries can do with support, the latter emphasizes what they can’t do.

We also suggest that Step 1 should be iterative to account for dynamic impairments. The domains over which a beneficiary needs and desires help should be revisited as her dynamic impairment evolves to avoid both under- and overprotection. A supporter may also seek changes if, for example, she is no longer able or willing to provide decision-making assistance of the kind sought by the beneficiary. Clinicians could play a unique role in this process, as they may have important insights into the beneficiary’s cognition, function, and domains where support could be important—as well as the prognosis for the dynamic impairment. For instance, clinicians are well-positioned to know and explain that problems managing money often accompany cognitive decline (see, e.g., the National Institute on Aging recommendations for managing money problems in people with Alzheimer’s Disease available https://www.nia.nih.gov/health/managing-money-problems-alzheimers-disease). We recognize that clinicians may lack the time or resources to engage routinely in these assessments. Nevertheless, specifying a clinician’s role (and responsibilities) may be helpful for refining future supported decision-making frameworks for individuals with dynamic impairments.

Step 2: Identify the Kinds of Support That Are Needed and Desired

Step 2 involves the specification of the kind of assistance needed and desired by the beneficiary. Some beneficiaries might request communication and interpretive supports to assist them in transferring or processing information. A person with aphasia—a disorder in the ability to process spoken and written language—might benefit from a visual decision-making aid that allows her to point to objects while communicating (Kagan 1998; Taylor, Wallace, and Wallace 2019). Meanwhile, a person with memory impairments might benefit from written lists or reminders (Smith et al. 2011). Another kind of support involves building and sustaining a supportive network that collectively assists the beneficiary in making decisions and following through with them. Support networks can assist the beneficiary in laying out a “life vision” that serves as a heuristic for making daily decisions (Bigby et al. 2017).

As with Step 1, Step 2 is a negotiation that seeks to balance the beneficiary’s autonomy and protection by preventing the imposition of “one-size-fits-all” support structures. We don’t, for example, require adult amputees to get a particular kind of prosthesis to replace a missing limb (or even to get a prosthesis at all). Rather, prostheses are crafted to reflect an individual’s specific needs and preferences. Similarly, Step 2 instructs us to avoid imposing cognitive prostheses without due consideration of the beneficiary’s needs and wishes. This, again, distinguishes supported decision making from guardianship. Custom support structures prevent encroachment on autonomy that might otherwise occur in surrogate decision-making regimes.

Step 3: Establish a Supported Decision-Making Agreement

The third step is to establish a formal agreement between the beneficiary and supporter(s). A supported decision-making agreement should clearly outline the conclusions of Step 1 and Step 2. Although supported decision making may emerge from informal relationships between a supporter or support network and a beneficiary, a formal agreement solemnizes the decision-making relationship, clarifies expectations, and allows third parties to independently check whether the beneficiary and supporter(s) are abiding by its conditions. This provides important moral grounding for supported decision making. An agreement generates expectations of duty. Failure to satisfy those expectations could result in moral wrongs. In the absence of a formal agreement (perhaps even one that is legally recognized), it is also more difficult—if not impossible—for relevant parties, such as clinicians or attorneys, to understand the parameters of the supported decision-making relationship and place faith in the beneficiary’s decisions. For people with dynamic impairments, formalization of an agreement also allows all parties to plan for future states of cognitive impairment. It can allow parties to track the progression of dependency as an individual’s disease evolves and anticipate decision-making supports that might be necessary in the short and long-term.

Implementing Supported Decision Making for Jack

Consider again Jack, the oncologist with MCI described at the outset of this article. Jack’s trusted friends and colleagues, whom he has known for many years, learn that Jack is experiencing mild impairments in memory and executive function that cause him to need more time to learn and process new information. Initially, they organize an informal support network for Jack in response to his MCI diagnosis. Then, consistent with Step 1, Jack expresses that he wants help with estate planning and moving to a continuing care retirement community in anticipation that his cognition will worsen. In Step 2, after discussion, Jack’s supporters offer to attend meetings with him, provide written summaries of what is discussed at those meetings, and re-explain relevant facts at the time any decision is made. Jack accepts these offers and clarifies that he’d like different people within his support network to assist with different issues. Jack is, for example, more comfortable with his friend Yolanda supporting him with financial decisions, while he is more comfortable with his friend Michael supporting him with housing decisions. Finally, consistent with Step 3, Jack’s relationships with Yolanda, Michael, and other members of his support network are formalized in an agreement. The agreement specifies the parameters of Jack’s decision making as well as the roles that Yolanda, Michael, and others will play. This formalization may particularly benefit someone like Jack, who is not situated within a traditional familial structure. The agreement serves as a heuristic for Jack and his support network to guide conversations about decision making and planning for the future. Over time, Jack and his supporters—with input from Jack’s clinicians—will revisit the agreement and revise it in light of changes in his cognition and function.

The above-described process differs from guardianship in several important ways. The process relies on organic, “bottom-up” support structures, rather than a “top-down” legal mechanism. The process also accounts for the nuances of Jack’s dynamic impairment. A supported decision-making agreement can span the period of marginal capacity. As a result, Jack will continue to exercise and enjoy autonomy with the support of his friends while also laying the groundwork for greater protections as his cognitive impairment worsens. Attentiveness to Jack’s needs and preferences—and engaging with him in active negotiations over time—respects his personhood. Guardianship and other surrogate decision-making regimes might also achieve these goals. But, in practice, this requires exceptional care and consideration for the needs of the beneficiary. That guardianship is designed for the protection of people with diminished capacity, rather than the promotion of autonomy for people with marginal capacity, raises questions about its appropriateness for people like Jack.

CHALLENGES TO SUPPORTED DECISION MAKING

The project of supported decision making faces a number of difficult conceptual and empirical challenges that would benefit from sustained bioethics scholarship. Here, we identify the challenges we think are most pressing. We respond to them briefly and highlight avenues for future research.

Are Beneficiaries Authorized to Enter into a Supported Decision-Making Agreement?

The need for supported decision making implies that a beneficiary has diminished decision-making capacity. But there is a presumption that she is still capable to enter into a supported decision-making agreement. What justifies this presumption?

One way to address this challenge is to distinguish the capacity to enter into a supported decision-making agreement from the capacity to make the kinds of decisions enumerated in the agreement. For example, it is recognized in U.S. law that people who lack capacity to make medical decisions at the end of life may still have capacity to assign a surrogate decision maker (Kim and Appelbaum 2006). This practice is justified because the threshold of capacity required to appoint a surrogate is lower than that to consent to more complex decisions. Similarly, the kinds of decisions enumerated in supported decision-making agreements will often be complex and could result in unfortunate consequences if poor decisions are made. But the decision to enter into a supported decision-making agreement is relatively less complex. Moreover, these agreements are often formalizations of ongoing, trusting relationships with friends and family intended to enhance a beneficiary’s wellbeing. Thus, the threshold of capacity to enter into a supported decision-making agreement is justifiably low. People with marginal capacity would reasonably satisfy this threshold.

This response, however, raises questions about the minimum level of decision-making capacity required to enter into a supported decision-making agreement. The project of supported decision making would benefit from future scholarship that describes the specific decisional abilities that show a person with dynamic impairments can (or cannot) enter into a valid supported decision-making agreement.

Would Supported Decision Making Lead to Abuse and Exploitation?

A second concern centers on abuse and exploitation. As we argued above, supporters function as cognitive prostheses, but they differ from other cognitive prostheses, like notebooks, because they have their own interests and beliefs. These interests may positively or negatively influence supported decision making. A supporter might have a conflict of interest that slants the proffered support and results in decisions that benefit the supporter rather than the beneficiary. Unfortunately, such exploitation often occurs in financial decision making for older adults with cognitive impairments caused by aging or neurodegenerative diseases (Spreng, Karlawish, and Marson 2016).

We concede that supported decision making could result in these harms. However, they are not unique to supported decision making, but rather are persistent problems for guardianship and other forms of surrogate decision-making. Thus, the potential for abuse cannot be a fatal critique of supported decision making. Further, protections can be built into supported decision-making agreements to prevent or mitigate abuse. Texas’s supported decision-making law, for example, includes an oversight provision that permits the temporary appointment of an alternative supporter if the primary supporter has a conflict of interest. Texas law also requires any person who is aware of the supported decision-making agreement and has cause to believe that the beneficiary is being neglected or abused to report the alleged abuse (Texas Estate Code §1357.0525 2015).

A challenge for bioethicists is determining the extent to which supporters’ interests can permissibly inform their behavior within supported decision-making relationships. After all, a supporter may have justified interests in limiting—or guiding—a beneficiary’s decisions in certain contexts to protect or promote the beneficiary’s welfare, and relational autonomy suggests that joint deliberations can enhance decision-making. Mechanisms are needed to distinguish ethically justified interventions from abusive behavior.

How Should We Transition Between Supported and Surrogate Decision Making?

We have argued that supported decision making and surrogate decision-making regimes, like guardianship, are complementary. There will be times when individuals with dynamic impairments need to transition between supported and surrogate decision making. Under what conditions should this occur?

Supported decision-making laws from other countries offer examples of potential thresholds for imposing greater protections on a beneficiary. The British Columbia Representation Agreement Act of 1996 specifies that, if “the [beneficiary’s] current wishes cannot be determined or it is not reasonable to comply with them, the [supporter] must comply with any instructions or wishes the [beneficiary] expressed while capable” (British Columbia Representation Agreement Act of 1996, §16.3). Another example is Ireland’s Decision Making (Capacity) Act of 2015, where the role of a “co-decision maker” (akin to a supporter) is to jointly make decisions with the beneficiary, as specified in a co-decision-making agreement. In cases of conflict, the Act states that, “a co-decision maker shall acquiesce with the wishes of the [beneficiary] in respect of the relevant decision, unless it is reasonably foreseeable that such acquiescence […] will result in serious harm to the [beneficiary] or to another person” (Ireland Decision-Making (Capacity) Act, §19.5). These two laws are interesting because they give the supporter limited “veto power,” which is a species of surrogate decision making; a supporter may permissibly refuse to comply with the beneficiary’s wishes if they are unreasonable (B.C.) or if they will result in harm to self or others (Ireland). In practice, these standards may have different effects. Decisions that will result in serious harm are likely be unreasonable, but not all unreasonable decisions will result in serious harm.

Consistent with the principle of respect for persons, these laws attempt to balance autonomy and protection by specifying the upper limit of risk that is tolerable within a supported decision-making agreement. But it is unclear which of these two standards, if either, adequately captures an ethically justified trigger for imposing surrogate decision making on a beneficiary. As neither standard bars cognitively unimpaired people from making (even very poor) decisions, other standards—like incapacity—also merit our consideration. Future work is needed to identify an ethically acceptable trigger and to further specify the complementarity of supported and surrogate decision making.

Does Supported Decision Making Comport With the Doctrine of Informed Consent?

A fourth challenge is to determine how supported decision making comports with the doctrine of informed consent. Relational autonomy suggests a beneficiary and her supporter(s) are to be regarded as a decision-making unit. Yet, the doctrine of informed consent has its roots in individualistic conceptions of autonomy. The doctrine of informed consent may therefore need to be revised to accommodate supported decision making. How should a beneficiary’s decision-making capacity—with the provision of support (Browning, Bigby, and Douglas 2014)—be assessed? How do we determine whether a beneficiary’s decision is voluntary given the external influence of the supporter? And to what extent can a beneficiary be regarded as “informed” if she is reliant on the cognitive capacities of a supporter? These questions suggest that new policies and practices—and perhaps new ethical frameworks—might be needed.

Does the Project of Supported Decision Making Actually Achieve Its Stated Goals?

A fifth challenge is the dearth of empirical evidence that supported decision making achieves its stated goals. Preliminary data suggest that beneficiaries of supported decision-making agreements experience greater happiness and confidence. Some data also suggest that the age of the supporter and the degree to which the beneficiary is provided opportunities to make decisions influence the longevity and effectiveness of supported decision-making agreements (Shogren et al. 2017c). However, it is unclear whether generalizable claims can be made about the effectiveness of supported decision making from these sparse data. Empirical work is needed to measure the effectiveness of supported decision making from the perspectives of diverse stakeholders, including but not limited to beneficiaries.

These five challenges are not fatal to the project of supported decision making—either generally or for people with dynamic impairments. Instead, they are the rough and unfinished edges of an emerging ethical paradigm that contrasts with firmly established norms regarding consent, autonomy, and decision making (Bach and Kerzner 2010). Just as we’ve experienced an evolution in theoretical and legal frameworks to accommodate marginalized people in the workplace, in voting, and in health care, we are currently seeing a shift in the way we think about—and advocate for—the autonomy of people with marginal capacity. These challenges are expected when striving to build a truly inclusive society. Bioethicists can play an important role in resolving them.

CONCLUSION

The formal project of supported decision making is still relatively new. Yet, supported decision making as a general practice is not revolutionary. Supportive relationships for people with dynamic impairments have long emerged organically among family and friends. A familiar example is the well-established role of informal care partners and caregivers in the lives of persons living with Alzheimer’s disease or brain injury. The formal project of supported decision making seeks to build upon these tried-and-true methods to enhance the flourishing of people with cognitive and functional impairments. This may be especially important in the lives of people who lack so-called “traditional” family structures. The task for bioethicists is to systematize these relationships so they can be utilized by people with dynamic impairments. Doing so, in our view, will improve the lives of a broad population of stakeholders.

DISCLOSURE STATEMENT

The HBRN is a thematic network of CDC’s Prevention Research Centers Program (PRC). The views expressed are those of the authors and do not represent the official views of the CDC. AP dedicates this article to the late Professor Anita Silvers, a beloved colleague and mentor. The last correspondence between AP and Professor Silvers before her death pertained to her enthusiasm for this manuscript.

Additional information

Funding

AP is supported by the Greenwall Foundation Faculty Scholars Program. JK is supported by NIA P30-AG010124. EAL is supported by NIA K01-AG064123, the Greenwall Foundation Faculty Scholars Program, and the Emmanuel and Robert Hart Chair in Bioethics. This work is made possible in part by the Healthy Brain Research Network (HBRN) funded by the CDC’s Alzheimer’s Disease and Healthy Aging Program U48 DP005053.