Supported decision making: Facilitating the self-determination of persons living with Alzheimer’s and related diseases

Abstract

Decision-making capacity describes the ability to make a particular decision at a given time. People with Mild Cognitive Impairment (MCI) and mild stage dementia typically experience an associated erosion of their decisional abilities. Many could be said to have marginal capacity. These individuals are in a liminal space between adequate and inadequate capacity. Too often, marginal capacity is overlooked as a category: individuals are classified either as having capacity and being able to make decisions independently or as lacking capacity and needing a surrogate to make decisions for them. These approaches can, respectively, result in under- or overprotection of individuals with marginal capacity. A promising alternative is supported decision making. Supported decision making is an approach to decision making in which a person with marginal capacity identifies a trusted person or network of persons to aid them in making their own decisions. Supported decision making is recognized by law in a growing number of states; it is important for geriatricians to be familiar with the concept, as they are increasingly likely to encounter it in their practice. Even in states where supported decision making is not formally recognized, it can be practiced informally, helping patients, care partners, and clinicians strike an appropriate balance between respecting autonomy and recognizing vulnerability. In this article, we describe supported decision making, discuss its ethical and legal foundations, and identify steps by which geriatricians can incorporate it into their practice.

Capacity describes a person’s ability to make a particular decision at a particular time. To determine whether a person has or lacks capacity, a clinician assesses at least one of the four decisional abilities: understanding, appreciation, reasoning, and expressing a choice.¹ Multiple studies involving persons with Alzheimer’s disease (AD) and other diseases that cause Mild Cognitive Impairment (MCI) or dementia demonstrate that impairments in cognition diminish their performance on the decisional abilities. Studies also show that these individuals do not transition from having to lacking decision making capacity; rather, over time, they move from adequate capacity to marginal capacity and then to incapacity. These transitions have important but largely overlooked implications for decision making.^2,3

Unfortunately, the law and bioethics typically dichotomize capacity as adequate or inadequate. Marginal capacity is neglected. For persons living with AD, this neglect has potentially negative consequences. When a person with marginal capacity is categorized as having adequate capacity, although their authority is respected, impairments that might affect the quality of their decision-making or of the resulting decisions are not addressed. In contrast, when a person with marginal capacity is categorized as having inadequate capacity, their decisional authority is unfairly taken away. Simply put, the two dominant approaches to decision making—independent and surrogate—are not well-suited to meet the needs of individuals with marginal capacity.

Marginal capacity is therefore an “important clinical category” and a promising intervention point to improve decision making.² Advances in AD diagnostics and treatments amplify its importance. These advances will increase the number of persons diagnosed in the earliest clinical stages of the disease (MCI and mild stage dementia) and also extend their time living in these stages in which marginal capacity is common. Continuing to approach decision-making by relying on a dichotomized interpretation of capacity means these individuals will experience the negative consequences of either over- or underestimation of their decisional abilities.

In this article, we detail a model of decision making for persons with marginal capacity, called supported decision making. In supported decision making, an individual with marginal capacity identifies another person or persons able and willing to assist them, and then the individual utilizes that assistance to successfully make their own decisions.⁴ The goals of supported decision making are to balance considerations of autonomy and vulnerability and nicely align with two of the “five M’s of geriatrics.” ‘Mind’ encompasses assessing and managing cognitive and emotional impairments, and ‘Matters Most’ emphasizes learning about the person as well as respecting and supporting the person’s self.⁵ Geriatricians are thus natural champions of supported decision making for persons with marginal capacity. We conclude by outlining steps for incorporating supported decision making into clinical practice.

A continuum disease, a continuum of decisions

The clinical definition of AD, developed in 1984 and known as the McKhann Criteria, links the disease label (i.e., Alzheimer’s) to the presence of disabling cognitive impairments (i.e., dementia).⁶ Now, however, discoveries of biomarkers of the characteristic pathologies are making it possible to define AD in terms of: deposition of amyloid-β fibrillar plaques; accumulation of hyperphosphorylated tau-based neurofibrillary tangles; and neuronal and synaptic degeneration.⁷ Known as the “A/T/N framework,” this biological definition expands the scope of AD diagnosis to include persons with mild or even no cognitive impairments.⁸

Years before the onset of cognitive impairment, AD biomarkers precipitate a sequence of events that are the subject of ongoing investigations.^7,8 What is known is that biomarker status and cognitive staging are two distinct pieces of information that, considered together, determine where (if at all) a person is on the AD continuum. Understanding AD as a continuum disease – one that begins in a “preclinical” stage, defined by the presence of AD neuropathology in the absence of measurable cognitive impairment – makes possible new approaches to care and treatment. It resembles the transformations in other chronic diseases such as cardiovascular disease and cancer. These diseases are notable for a steady (sometimes controversial) expansion of diagnostic cut-offs to encompass milder stages of impairment and even unimpaired, “at risk” populations.

The translation of the A/T/N framework from research into practice has been neither straightforward nor speedy. The U.S. Food and Drug Administration (FDA) first approved florbetapir, an amyloid-β PET imaging agent, in 2012; yet, in the years since, patients have had limited access to this and subsequent biomarker tests. The obstacles include: debates over the value—particularly the medical actionability—of a biomarker test result; lack of insurance coverage and large out-of-pocket costs associated with these tests; the burdens of testing; and the need for specialized resources to conduct tests and interpret results.⁹

Recent scientific and policy advances are overcoming many of these obstacles. The FDA has approved several new therapies for persons with mild stages of cognitive impairment (MCI or mild stage dementia) and biomarkers of amyloid-β and tau. Although reasonable clinicians still disagree about whether the benefits of these drugs outweigh their risks, the development and approval of therapies that might slow disease in the MCI and mild dementia stages addresses concerns about medical actionability.¹⁰ The availability of drugs is leading to insurance coverage for biomarker testing. Further, technological advances in blood-based biomarker testing should reduce the cost and burdens associated with biomarker testing generally; indeed, some blood-based tests are already commercially available.

If early disease detection and intervention are successful, more people will be diagnosed with AD. They will live longer in the earlier stages of the AD continuum, when they and their care partners confront decisions from the mundane to the momentous. Some decisions will be about medical care but many will be important non-medical decisions that encompass all domains of the person’s life.¹¹ It is important that patients are able to participate in all of these decisions. Supported decision making offers a way to do this.

A continuum of capacity, a continuum of decision-making approaches

Cognition and capacity are related but distinct concepts. Cognition describes the brain’s operations such as remembering events, turning ideas into language, organizing spatial arrangements, and paying attention. Capacity describes the ability to make a particular decision at a particular time.¹ As cognition declines, decision-making abilities also decline and as they do, a person may move from having adequate to marginal or inadequate capacity.

If an individual’s place on the AD continuum is defined by both their biomarker status and their level of cognitive impairment, then it is apparent that the AD continuum overlays a continuum of decision-making capacity. The extremes of this continuum are capacity and incapacity; the middle encompasses marginal capacity.^3,12 MCI and mild stage dementia are associated with detectable declines in decision-making abilities.^3,13 When the decisional abilities of individuals with MCI and mild stage dementia are compared to cognitively unimpaired persons, some perform as well as the unimpaired, and many have either marginal or inadequate performance.^2,3

These data have notable ethical implications. First, it is inappropriate simply to assume an individual on the AD continuum lack capacity. Second, their place on the continuum of decision-making capacity should be assessed in relation to the decision at hand and the context in which it is being made.¹⁴ This assessment must eschew the capacity-incapacity dichotomy and embrace marginal capacity as an important third category. For reasons outlined above, ignoring this third category can have negative consequences for persons living with dementia. Last, the approach to decision making for with marginal capacity should embrace supported decision making.

Why is a new approach needed? The consequences of full capacity are clear: people with capacity are empowered decision-makers, free to make decisions without others’ interference. This is the default not simply in clinical care but in life. Yet, people with marginal capacity may experience decision-making inefficiencies that cause them to struggle to make decisions independently. Support could improve the quality and experience of their decision making.

Various tools are available to make clinical decisions on behalf of persons who lack capacity. The most familiar is surrogate decision making: someone else makes decisions for the patient. Ideally, a surrogate provides substituted judgement, choosing what the patient would have if capable. Written documents, such as advance directives, may assist in this effort. If the surrogate cannot make a substituted judgment, they should decide what is in the patient’s best interests. Beyond the clinical context, surrogate decision making can be formalized by the law through guardianship. While guardianship laws vary by state, a guardian is typically appointed by a court for a person (the ward) who is legally determined to lack the capacity to make decisions across some or all life domains.¹⁵ Guardianship limits a person’s independence for the sake of their protection. While ceding decision-making power to a surrogate may at times be necessary, it is generally neither required nor appropriate for those who retain even marginal capacity.

Rather than defaulting to either independent decision making or surrogate decision making, clinicians and patients need a decision-making approach that squarely acknowledges and addresses the challenges of living with marginal capacity. It must empower individuals to make decisions while offering protections appropriately tailored to their vulnerabilities. Supported decision making, discussed next, is such an approach – a bridge between independent and surrogate decision making (Figure 1).

Figure 1.

Capacity is task and context specific. If a decision must be made that requires an assessment of decisional capacity, the clinician should assess the person’s decision-making abilities. The level of capacity – adequate, marginal, or inadequate – informs the approach to decision making. Patients with cognitive impairments are more likely to need, but don’t necessarily need, supported or surrogate decision-making.

Supported Decision Making

In supported decision making, a person with marginal capacity makes a decision with the help of a trusted other, or a network of other people.⁴ The person with marginal capacity is called the beneficiary and the trusted others are their supporters. The aim of the supporters’ help is to enhance the beneficiary’s decision-making capacity so that the beneficiary can make their own decision. Supported decision making addresses the pitfalls of independent and surrogate decision making for persons with marginal capacity: decisions remain the beneficiary’s own, thus preserving autonomy. The provision of appropriate support remedies the inefficiencies and struggles in decision making.⁴ An ideal supporter is available, reliable and trustworthy. In other words, their support is consistent, and they act with integrity. A supporter can be a restorative cognitive prosthesis—even an extension of a patient’s agency—allowing for continued independence.⁴

A beneficiary and supporter may have an informal or formal agreement regarding the kinds of help the beneficiary wants from the supporter, and across which domains of decision-making this help is desired. Support may encompass, but need not be limited to, medical decisions.

This kind of decisional assistance likely sounds familiar. Support often emerges organically within caregiving dyads: many people with MCI and early-stage dementia report making decisions collaboratively with their care partners.¹⁶ Geriatricians often work with patients and families to reach care decisions. Nevertheless, patients, care partners, and clinicians should find supported decision making empowering. The framework can help them explain and understand what they’re naturally doing – similar to acknowledging a family member as a “care partner” or “caregiver”— and recognize the cognitive work of providing care. Moreover, supported decision making is increasingly being recognized as not just as an ethically desirable decision-making approach but as a legal tool.

Foundations of Supported Decision Making

Supported decision making is the latest transformation in how law and medicine promote autonomy. These transformations have recast clinical care in fundamental ways. The doctrine of informed consent, with its roots in early to mid-20^th century legal cases, developed in earnest in the 1970s. By century’s end, a clinician’s duty to obtain informed consent was a legal and ethical norm and a routine part of clinical practice.¹⁷

In the 1990s, a combination of events – including growing awareness of the burden of unwanted medical interventions at the end of life (animated by the stories of Nancy Cruzan and other incapacitated persons whose families sought to withdraw life-sustaining care) and passage of the federal Patient Self Determination Act – led to states recognizing advance directives. Asking patients who will make decisions for them if they cannot and engaging in advance care planning are now established pillars of good care.

Supported decision making is garnering bipartisan support. In 2015, Texas became the first U.S. state to recognize supported decision making; in late 2023, California joined Texas and at least 13 others states and the District of Columbia in establishing comprehensive legal frameworks for supported decision making.¹⁸ Several more states require that supported decision making be considered as a less-restrictive alternative to guardianship. Additionally, legislation has been and continues to be introduced in other states, suggesting that supported decision making will continue to spread across the United States. This evolving legal landscape means geriatricians will see supported decision making agreements in their practice and should be familiar with such agreements and any relevant laws where they practice.

The details of supported decision-making laws vary by state. Common features are that individuals craft an agreement specifying the kinds of decisions they need help making and the kinds of support they want without court oversight. Such agreements can generally be entered, revised, and exited with far fewer impediments than exist for guardianships. In states where supported decision-making agreements are recognized, a beneficiary can share an agreement with clinicians and other third parties, helping those third parties feel confident accepting the beneficiary’s decisions without fear of incurring liability or violating privacy.

As in guardianship, there are fears about supporters behaving inappropriately. A beneficiary’s decisions should not be unduly influenced by the supporter. Having a network of supporters can distribute influence over multiple people, who provide important checks and balances, and, if desired, an independent monitor may be added to an agreement to assure that sensitive decisions are made without improper influence. A beneficiary may revise an agreement if they feel a supporter is acting problematically. Further, many states that recognize supported decision-making agreements require that supporters and third parties aware of such agreements report suspicions of abuse, neglect, or exploitation.

Empirical Evidence on Supported Decision Making

Supported decision making has, to date, largely been utilized by people with intellectual and developmental disabilities (I/DD). As members of this community age into adulthood, many find themselves under unwanted guardianships.¹⁹ Supported decision making offers them an alternative. Small studies involving beneficiaries with I/DD demonstrate that, compared to guardianship, supported decision making results in a greater sense of independence, dignity, and freedom.²⁰ There is also evidence supported decision making can be successfully used to make medical decisions: a majority of beneficiaries and supporters report making decisions about when to go to the doctor and what the doctor is allowed to do.²⁰ Though additional research is needed in persons with MCI or dementia, these promising findings have led many to encourage the use of supported decision making for older adults, including but not limited to those with AD and other neurodegenerative diseases.^4,21

Supported and Shared Decision Making

Supported decision making is distinct from shared decision making. The latter emphasizes the active participation of both the patient and clinician in the decision-making process.²² In shared decision making, clinicians (experts in medicine) and patients (experts in themselves) identify available options; consider those options in light of the patient’s values, preferences, and interests; and reach a joint decision. In contrast, supported decision making describes the involvement of individuals who are not part of the care team in a person with marginal capacity’s decision making.

Though shared and supported decision making are distinct, they’re not incompatible. Clinicians can engage a beneficiary-supporter dyad—a dyad that is employing in supported decision making—in shared decision making. Triadic communication – communication between a patient, supporter, and clinician – may substantially enhance the decision-making process, its outcomes, and overall patient wellbeing.

Supporting Supported Decision Making

Geriatricians should champion supported decision making as the standard of care for persons with marginal capacity, including but not limited to those on the AD continuum. The practice promotes patient self-determination, while at the same time recognizing vulnerability and promoting safety.²³

Table 1 outlines steps for incorporating supported decision making into clinical practice. These steps might also be useful to share with patients and care partners as they navigate the effects of marginal capacity in their daily lives. Patients with marginal capacity may feel shame or stigma around their need for decisional assistance.²⁴ They should be reassured that everyone needs help sometimes, meaning that supported decision making is different in degree rather than in kind from independent decision making.²⁵

Table 1.

Incorporating Supported Decision Making into Clinical Practice

Steps	Actions
(1)Elicit and acknowledge patient reports of cognitive challenges.	• Discussing cognitive challenges can foster reflection on decision making and the supports needed. • Note that a common summative term for cognitive impairments is “memory problems.” This term is commonly used even in persons whose impairments are not in memory but other domains such as executive function and expressive speech. Often, multiple domains are impaired. • If a patient does not note cognitive problems, but you suspect them based on history, you might ask:  ∘ “Are you noticing any problems with memory or thinking? Even a little problem?”  ∘ “Do you feel not as sharp as you used to feel?”
(2)Elicit the impact of cognitive problems on decision making and identify appropriate supports.	• Understanding how changes in the patient’s cognition affect decision making can draw attention to the need for decisional support and inform the kinds of supports needed. Consider asking the patient and care partner:  ∘ “Are you noticing that memory problems sometimes make it harder to make decisions?”  ∘ “Do you find you’re struggling to make decisions?” • Use the cognitive assessment to inform discussion of the kinds of supports a patient needs. • If cognition changes over time, revisit the question of what supports are needed.
(3)Elicit who can serve or is serving in a supporting role.	• Supported decision making can emerge naturally within relationships. Consider asking the patient:  ∘ “You’ve told me you sometimes have problems making decisions. Who helps you make decisions?” • The supporter(s) may not be the same as the patient’s care partner or their named surrogate. • Individuals may have different supporters for different decision-making domains. • Standard practice should include recording supporters’ names in the patient’s chart. • If a patient shares a supported decision-making agreement, include it in their chart.
(4)Foster reflection on the quality of the supporter.	• Consider asking:  ∘ “Is [person’s name or relationship] trustworthy, and reliable? What makes you think so?” • During visits, monitor for signs of abuse, neglect, exploitation, or other concerning behaviors. The supporter might not be capable of providing decisional support or may engage in harmful behaviors. • Clinicians can and should report concerns.
(5)Accommodate supported decision-making in clinic visits.	• Provide patient education on supported decision making or direct patients to educational tools. • Have space and chairs for the supporter(s) to join the appointment; if they cannot join in person, offer to have them join by phone during the appointment. • Allow adequate time for decision-making. • Might note in the chart: who was there; how information was presented; how the supporter helped; and how the decision was communicated. • With the patient’s permission, facilitate the supporters’ access to medical records (e.g., HIPAA waivers).
(6)Evaluate the appropriateness of supported decision making for this individual and this situation.	• Because capacity is task and context specific, it should be assessed in an ongoing fashion. • Use the decision-making approach appropriate to the patient’s level of capacity.

Strengths of supported decision making include its flexibility and ability to be tailored to reflect a beneficiary’s needs and wishes. A clinical cognitive assessment can identify needs and suggest promising means for supporters to assist decision making. For example, deficits in episodic and working memory can cause challenges carrying information forward from one clinic visit to the next; a supporter might help by keeping notes or summarizing key facts for the beneficiary. Similarly, impairments of executive functioning can cause challenges in keeping track of and organizing information; to address this, supporters might break large decisions into smaller steps before walking the beneficiary through those. A third example is that aphasia can cause challenges in expressing ideas; clinicians can encourage supporters to work with the beneficiary to draft questions and capture key ideas, giving the beneficiary something to refer to during clinical visits.

Supported decision making will not be appropriate for all patients. Particularly for persons with neurodegenerative diseases like AD, there may come a time when, given the progression of disease, supported decision making is no longer fitting because – even with the provision of support – their decisional abilities remain inadequate. Because supported decision making relies on a trusted other, further work is needed to understand how to assist unbefriended or socially isolated adults who lack an obvious supporter.

Like capacity assessment, the choice of supported decision making is a matter of clinical judgment. Clinical tests for capacity provide no cutoff score for the determination of incapacity.²⁶ Rather, patient performance is weighed against the clinical circumstances, context, and stakes of the decision. For instance, as a decision’s risk of harm increases, it is widely held that there is a progressively higher bar for decisional ability.¹⁴ If there is a “fit” between the patient’s abilities and the decision at hand, a patient may be regarded as having adequate capacity; if not, the patient may be regarded as having marginal or inadequate capacity. As shown in Figure 1, the selection of a decisional approach follows from the results of the capacity assessment. Supported decision making is appropriate if the patient’s capacity is marginal and might be buttressed with decisional support.

Conclusion

AD is a disease of autonomy. It slowly erodes a person’s decisional abilities: from adequate, to marginal, to inadequate. Taking decision-making power away from individuals with marginal capacity can prematurely curtail autonomy, hastening rather than holding back the effects of disease. In the period of marginal capacity, decisional abilities can be bolstered, thereby extending the period in which persons author their own stories.

In the last century, as the disciplines of law and ethics socialized clinicians to recognize the value of surrogate decision making, clinicians learned to ask their patients “If you can’t make a decision for yourself, who should we talk to?” In this new century, clinicians should add a new question to their assessments: “Who supports you in making decisions?” This new practice is essential to enhance the lives of those living with cognitive impairment.