Introduction
Because respect for patient autonomy is a central goal of medical decision-making law and ethics, health care providers must obtain their patient’s informed consent prior to administering treatment.Footnote 1 Obtaining informed consent requires that physicians disclose information about the patient’s diagnosis, prognosis, and risks and benefits of various treatments.Footnote 2 During the informed consent process, health care providers may assess their patient’s decision-making abilities to determine if the patient is able to understand relevant medical information and communicate a treatment decision. If the patient fails to demonstrate one or more decision-making abilities — understanding, appreciation, reasoning, or communicationFootnote 3 — providers may deem the patient incapacitated.Footnote 4 This is because the patient’s decision-making impairments may make it impossible for the patient to understand information, act intentionally, or withstand undue influence, hallmarks of autonomous decision-making that the informed consent requirement is designed to promote.Footnote 5
If a patient is determined to lack capacity, providers may disqualify the patient from making contemporaneous medical decisions.Footnote 6 In such instances, providers instead rely on the patient’s advance directive or substitute decision-makers to provide consent to medical treatment.Footnote 7 The disqualification of patients with impaired decision-making capacity from making contemporaneous decisions is facilitated by health care decision-making law.Footnote 8
Despite the routine assessment of decisional capacity and common use of substitute decision-makers in the clinical context, the concept of capacity is contestedFootnote 9 and its measurement is flawed.Footnote 10 For example, scholars and clinicians disagree about whether there should be more or fewer criteria for demonstrating capacity.Footnote 11 There is further lack of consensus about whether some types of medical decisions should have different evidentiary burdens for demonstration of capacity.Footnote 12 Moreover, there is robust literature demonstrating that formal capacity assessment instruments are not always valid and reliable.Footnote 13 This Article focuses on these and other issues with capacity assessments.
This Article also argues that capacity as currently understood is often de-relationalized. (In)capacity is viewed as a cognitive property of an individual — an individual has capacity or does not.Footnote 14 However, when properly conceived, (in)capacity is constituted in interaction with others (e.g., health care providers, family, friends) and one’s environment, and mediated through one’s body and experience of health, illness, or disability. When this reality is not acknowledged or appreciated, there are missed opportunities for strengthening patients’ decisional capacity by, for example, modifying how providers communicate with patients or changing the environment to improve decision-making. Furthermore, not acknowledging the relational and contextual nature of (in)capacity likely leads to weakening of patients’ decision-making abilities and the unnecessary disqualification of patients from contemporaneous decision-making, which subsequently negatively affects patient interests in maintaining autonomy and bodily integrity and experiencing wellbeing.
Understanding (in)capacity as relational and contextual is also consistent with the legal trend toward supported decision-making. Supported decision-making is one tool to promote autonomy for individuals with cognitive disabilities, and many state legislatures have passed supported decision-making legislation.Footnote 15 And supported decision-making can be used informally in states without supported decision-making laws.Footnote 16 Conceptualizing capacity as relational and further institutionalizing supported decision-making can help individuals with disabilities achieve equal legal capacity.
This Article will foreground the relational and contextual nature of (in)capacity and address problems with capacity assessments for adult patients in the medical decision-making context.Footnote 17 Part I discusses the centrality of decisional capacity to informed consent law along with arguments about how capacity should be understood. This Part will also argue that (in)capacity should be understood relationally and contextually. Part II discusses problems with formal capacity assessments, including validity and reliability problems with assessment instruments along with other issues related to the assessment process. This Part also discusses how concerns about health care provider power over patients and patients’ subjective wellbeing and privacy interests have received inadequate attention from scholars writing about capacity. Finally, this Part highlights how assessing capacity and deeming a patient incapacitated can, in some instances, conflict with disability law. Part III proposes reforms to the capacity assessment process, including altering the clinical environment to make it conducive to autonomous decision-making, improving health care provider communication, preventing abuse of the incapacity exception to informed consent, and modifying formal tools to include the practice of supported decision-making. Part IV discusses objections to these proposals. This Article concludes by discussing the implications of these arguments about the nature and assessment of (in)capacity in other decision-making contexts with different legal interests and stakeholders, raising questions about implementation of supported decision-making and how to achieve “legal capacity on an equal basis to others in all aspects of life”Footnote 18 for persons with cognitive impairments.
I. Capacity and Law of Medical Decision-Making
Adults are generally entitled to make decisions about their medical treatment. This entitlement is enshrined in both informed consent law and medical ethics and is based on the principles of respect for patient autonomy, maintenance of patient bodily integrity, and promotion of patient wellbeing.Footnote 19 This Part will first discuss the law of informed consent and then discuss the concept of capacity, which is an important limitation on medical decision-making rights. This Part will then discuss evolving scholarly understandings of capacity.
A. Informed Consent and Decisional Capacity
Physicians have a legal duty to obtain informed consent from their patients for medical interventions. Although the specifics of this duty differ by state, physicians typically must disclose information about the patient’s diagnosis, prognosis, recommended interventions and their risks and benefits, and alternatives to the recommended intervention along with their risks and benefits.Footnote 20 Patients can then decide to accept or refuse treatment, even if the result of their decision may be death or disability.Footnote 21 The doctrine and practice of informed consent is meant to ensure patients make autonomous medical decisions (i.e., make decisions intentionally, voluntarily, and with understanding).Footnote 22
Given the importance of respect for patient autonomy, one important limitation of the right to make medical decisions is the requirement that an individual be competent to decide (i.e., demonstrate capacity for autonomous decision-making).Footnote 23 The commonly accepted elements of decisional capacity include the ability to communicate decisions, understand information, appreciate how the information applies to individual circumstances, and reason about or through the decision.Footnote 24 Some refer to this conceptualization of capacity as the “four abilities model.”Footnote 25 Additional elements of capacity may include the ability to value or to have preferences.Footnote 26 Medical decision-making laws direct that capacity is to be presumed for adults.Footnote 27
Capacity may change over time.Footnote 28 An obvious example is when children mature into adults and gain decision-making abilities, skills, and responsibilities. Individuals may also lose capacity, however, if they acquire a neurodegenerative illness such as Alzheimer’s disease or acquire a severe brain injury.Footnote 29 Additionally, individuals may experience periods of incapacity due to conditions such as psychiatric illness but regain capacity when their illness is appropriately treated.Footnote 30
It is generally accepted that an individual need not demonstrate capacity for all decisions (e.g., financial) or even for all medical decisions, but instead just for the medical decision that needs to be made.Footnote 31 Capacity is “task” or “decision” specific.Footnote 32 With respect to the decision, some argue for a “sliding scale” approach to capacity: the more serious or risky the medical decision, the greater capacity (or evidence thereof) needed.Footnote 33
If an individual has impaired capacity and is unable to make contemporaneous decisions autonomously (i.e., they are deemed incapacitated), medical decision-making law still facilitates respect for patient autonomy. The law directs that health care providers rely on their incapacitated patient’s advance directive, which is a legal document that contains the patient’s written wishes about medical treatment or appoints a proxy decision-maker.Footnote 34 Relying on advance directives respects the patient’s precedent autonomy (i.e., autonomous decisions made in the past).Footnote 35 Given that many individuals do not complete an advance directive,Footnote 36 the law permits family members to decide on behalf of the incapacitated patient, trying to decide as the patient would decide if they were able, based on the patient’s values, beliefs, preferences, and interests,Footnote 37 which also respects the patient’s precedent autonomy. In the absence of family members who can function as substitute decision-makers or information about how the patient would decide (or if the patient was never competent), the law requires that substitute decision-makers decide based on the patient’s best interests, which is intended to promote patient wellbeing.Footnote 38
B. Evolving Understandings of Capacity
After decades of seeming consensus on the concept of decisional capacity, scholars in law, medicine, and philosophy have recently begun arguing that capacity for medical decision-making should be understood differently.Footnote 39
Some scholars argue that the “four [cognitive] abilities” of decision-making capacity should be retained, but that more criteria are also necessary to demonstrate capacity.Footnote 40 For example, some scholars argue that the decision itself should factor into consideration of a patient’s capacity.Footnote 41 On this view, if a patient’s decision causes medical harm, then the patient does not have capacity (even if they can pass a “four abilities” capacity assessment) and should be disqualified from the decision-making process.Footnote 42 Other scholars suggest that in addition to the traditional elements of capacity, the affective dimensions of patient’s decisions should also be assessed.Footnote 43 Others also argue that individuals who have opioid use disorder and refuse medical observation post-resuscitation from opioid overdose should be considered incapacitated even if they evidence the “four abilities” model of capacity, which suggests that some scholars view the absence of a substance use disorder as another criterion necessary to demonstrate capacity, at least for substance use treatment decisions.Footnote 44 If clinical practice adopts any of these views, fewer patients would be permitted to make their own medical decisions as the burden for demonstrating capacity would be greater.
Some scholars advocate reducing the criteria (or relaxing the standard) to demonstrate capacity in specific medical contexts.Footnote 45 For example, I argued that in instances of treatment refusal, the ability to communicate a refusal should suffice for a demonstration of capacity.Footnote 46 If my arguments are adopted, then more patients would be able to refuse treatment even if they had decisional impairments.
Others argue that the “four abilities” model of decisional capacity should be retained while being reconceptualized for the context of treatment refusals.Footnote 47 These scholars assert that the abilities to understand, appreciate, and reason not be analyzed with respect to the facts of a specific medical intervention but instead be considered with respect to a patient’s goals for treatment or views of the burdens of treatment.Footnote 48 If these arguments are adopted, more patients would be permitted to refuse treatment despite their decisional impairments.
Finally, scholars are increasingly interested in how supported decision-making can be used in a medical setting for various populations of patients with impaired cognition (e.g., patients with dementia, intellectual disabilities, etc.).Footnote 49 With this relational form of decision-making, a patient’s capacity can potentially be strengthened when others provide decision-making assistance, such as through gathering additional information, helping the patient deliberate, or helping the patient communicate their values and preferences.Footnote 50 If proposals to implement supported medical decision-making are adopted, more patients may be able to demonstrate capacity with support and thus more patients would be able to make contemporaneous medical decisions.Footnote 51
It is this final set of ideas about capacity with which this Article is most interested in engaging. Although not explicit in this body of scholarship, those asserting that supported medical decision-making can be appropriate for patients with decisional impairments view capacity as relational and contextual in nature.
This Article asserts that (in)capacity should be understood as relational and contextual for all patients making medical decisions. The cognitive abilities traditionally understood to constitute capacity (“four abilities”) can be strengthened or weakened through interactions with not only supporters, but also health care providers and the environment. Understanding (in)capacity as relational and contextual provides insight into how and why to ensure that more patients can make contemporaneous medical decisions even when they have decisional impairments. More specifically, this conceptualization of capacity accords with decision-making realities for all individuals facing serious medical conditions.Footnote 52 And if this conceptualization of capacity was explicitly adopted in law and medical practice, then there should be more opportunities for patients to demonstrate capacity and for more patients to make contemporaneous medical decisions, which would lead to true respect for patient autonomy and an increase in patient wellbeing, as will be discussed in Parts III and IV.
The next Part will focus on problems with capacity assessments and highlight where a relational and contextual understanding of (in)capacity could be beneficial.
II. Problems with Capacity Assessments
Because capacity is an essential component of and restriction on the right to make contemporaneous medical decisions, there must be ways to determine whether a patient has or lacks capacity. Sometimes determining incapacity is easy, as is the case when the patient is unconscious and thus clearly lacks the ability to make contemporaneous decisions.Footnote 53 Other times, however, the question of whether a patient has decisional capacity is more difficult to answer. Although many health care providers use their clinical judgment about whether their patient has capacity (i.e., informally assess capacity),Footnote 54 others may use an instrument such as the Macarthur Competence Assessment Tool-Treatment (“MacCAT-T”)Footnote 55 or Aid to Capacity Evaluation (“ACE”)Footnote 56 (i.e., formally assess capacity).Footnote 57
Researchers have devoted considerable attention to developing ways to measure capacity. There are many instruments to assess capacity available (too many to cover in this Article), but these tools include questions designed to assess patient abilities to understand, appreciate, reason, and communicate.Footnote 58 To illustrate with the MacCAT-T instrument, clinicians assess a patient’s ability to understand by asking patients to paraphrase information from their informed consent conversation, such as asking patients to tell clinicians what their medical condition is and what the recommended intervention is along with risks and benefits and to discuss the alternatives and their risks and benefits through “paraphrased recall” or by identifying facts they were told during the informed consent discussion.Footnote 59 This instrument assesses a patient’s ability to appreciate by determining whether the patient recognizes what their illness is, and that treatment may have value.Footnote 60 This instrument assesses rationality by testing “problem-solving abilities” and “logical and adequate reasoning process” by asking the patient to make a treatment decision and explain why they made that decision.Footnote 61 Communicating a choice is assessed by whether the patient makes a treatment choice in response to the vignette or whether they are ambivalent or make no choice.Footnote 62
Despite the widespread clinical practice of assessing patient capacity, there are numerous and well-documented problems with both formal and informal capacity assessments. This Part will discuss various problems with the instruments used to assess capacity, the process of assessing capacity, and the ethical and legal issues with capacity assessment and, where relevant, note how a relational and contextual understanding of capacity could improve the assessment. This Part first will note problems with the validity and reliability of tools used to assess capacity. It will also highlight issues with poor provider communication and the lack of accommodations for patients with disabilities in the assessment of their decision-making abilities. This Part will also discuss how capacity assessments can be abused and patients harmed when they are disqualified from making their own medical decisions. This Part will conclude by describing legal issues raised by disqualifying adult patients with decisional impairments from making contemporaneous medical decisions.
A. Questions about the Validity and Reliability of Capacity Assessment Instruments
There may be problems with the instruments used to formally assess capacity. Indeed, there is a body of empirical literature that reviews the capacity assessment process and instruments for reliability and validity.Footnote 63 Reliability can be understood as either “consistency”Footnote 64 or the reduction of measurement error.Footnote 65 In the process of constructing measures, in this case of decisional capacity, researchers will attempt to ensure the measure is stable (i.e., measurement over time is the same or test-retest reliability), that there are multiple measures that are internally consistent, and that when different evaluators use the measure, they come to the same result (i.e., interrater reliability).Footnote 66 Validity is “the extent to which a concept is accurately measured”Footnote 67 or “the extent to which an instrument measures what it purports to measure.”Footnote 68 Reliability is necessary for validity.Footnote 69
Sometimes there are issues with the validity of a particular instrument or means used to assess capacity. Although the researchers who developed the instrument likely intended it to measure the abilities to understand, appreciate, and reason (i.e., elements of decisional capacity),Footnote 70 the instrument may instead be assessing literacy, educational attainment, English proficiency, fear, cultural differences, communication disorders, or sensory disabilities.Footnote 71 Indeed, individuals with typical cognitive functioning may perform poorly on a formal capacity assessment.Footnote 72 Clinical judgment of patient capacity in the absence of a formal instrument (i.e., informal assessment) may suffer from similar problems.
There are also questions about the reliability of instruments to assess decisional capacity. Indeed, different providers using the same instrument to assess the same patient may come to different conclusions about a patient’s capacity, which could indicate poor reliability, and thus decreased confidence about the usefulness of the instrument. Significant problems with reliability in assessing capacity will prompt questions about the validity of the assessment.Footnote 73 If reliability is poor, perhaps the means of assessing capacity is not valid. However, even if there is excellent reliability for a particular instrument, it may not be valid.Footnote 74
Researchers have conducted studies comparing different instruments (used to assess the same patient) or comparing results from instruments to clinicians’ judgment.Footnote 75 A review of empirical literature found that there are significant validity and reliability issues in assessing capacity because different conclusions are reached about a patient’s decisional capacity depending on the instrument or clinical judgment relied upon.Footnote 76 Specifically, this review found that “[a]greement between physicians [about capacity] is near chance for patients with dementia,”Footnote 77 which means there is poor reliability (and thus poor validity) of physicians’ judgments of patient capacity. The review also concluded that physician judgment of patient capacity often differed from the outcome from a formal capacity assessment, and that various capacity instruments had little agreement on the four criteria for capacity.Footnote 78 In sum, research has found that “[r]ates of [decisional] impairment varied, depending on the instrument used.”Footnote 79
B. Problems in Process of Assessing Capacity
Even if a capacity instrument is valid and reliable, there may also be problems with when and how capacity is assessed in clinical encounters.
First, questioning a patient’s decision-making abilities may occur too early in the clinical encounter and focus too much on the patient rather than the communication between the patient and health care provider. If a patient seems confused and does not appear to understand their diagnosis, prognosis, or treatment options, a health care provider may think their patient has impaired decision-making abilities, which may prompt a capacity assessment. It could be that the patient has typical decision-making abilities, however, and that the reason for comprehension difficulties is that the provider has communicated poorlyFootnote 80 or because the patient has received conflicting information from different providers.Footnote 81 Thus, the patient may fail to demonstrate capacity because there have been provider communication failures. In this instance, the patient’s capacity has been weakened through suboptimal interactions with providers and could be strengthened if appropriate changes are made.
If providers can improve the informed consent discussion to increase patient understanding, they should.Footnote 82 Instead of assuming problems with comprehension are due to patient’s cognitive impairments, providers should assess whether they can increase comprehension by altering their communication style and how they disclose information. It may be the case that with further discussion and with changes in how information is presented to patients (e.g., more slowly, with less jargon, with opportunity for the patient to ask clarifying questions, with complementary visual or written information, in a language in which the patient is fluent), the patient may obtain and be able to demonstrate better understanding.Footnote 83 Again, (in)capacity is relational in this context. Patient understanding depends, in large part, on their interactions with their health care providers.Footnote 84
Second, if a patient’s decisional capacity is only assessed once, the results may not be indicative of the patient’s typical decision-making abilities. Patient’s decision-making abilities may change based on the environment (e.g., noisy, crowded hospital area), time of day, prescription drug use (e.g., overly sedated, insufficient dose or incorrect medication for psychiatric illness, etc.), other substance use (e.g., impaired from alcohol), and many other factors.Footnote 85 Indeed, incapacity may be only temporary,Footnote 86 and so if a patient is found to be incapacitated and it is not an emergency, it may be advised to see if the patient regains capacity or whether capacity can be restored prior to making a decision.Footnote 87 Ideally, capacity should be assessed multiple times.Footnote 88
Third, because patients with disabilities that affect their ability to receive information or communicate their decisions may wrongly be thought to lack decision-making capacity, accommodating these patients so they can make their own medical decisions should be a priority (e.g., providing disability-specific accommodations such as word boards, interpreter, captioning technologies, etc.).Footnote 89
C. Insufficient Consideration for Privacy, Wellbeing, and Power
Assessing capacity and disqualifying patients who are determined to lack capacity raises serious ethical considerations. As discussed previously, adults are entitled to make their own medical decisions because of their interests in maintaining bodily integrity, exercising autonomy and self-determination, and experiencing wellbeing.Footnote 90 There are other interests that are important to consider, however, such as medical providers’ professional autonomy,Footnote 91 the patient’s family’s preferences about the patient’s medical treatment and its effects on the family unit,Footnote 92 and state interests in promoting life and health and controlling costs.Footnote 93 However, the patient’s interests will often outweigh these (possibly) competing interests because the corporeal effects of the medical decision are primarily experienced by the patient.Footnote 94 It may thus be the case that even if a patient has decisional impairments, they should remain the rightful decision-maker even if in other social or legal contexts they may be prohibited from deciding.Footnote 95
This part will focus on the implications of assessing capacity for patient privacy, patient wellbeing, and health care provider power.
1. Capacity Assessments May Infringe Patient Privacy
Assessing capacity can constitute an infringement on patient privacy.Footnote 96 The infringement may only be minimal if a clinician asks patients to discuss the risks and benefits of potential medical interventions to assess understanding. However, to judge the quality of the patient’s decision-making, the assessment may delve into the patient’s values, beliefs, preferences, goals, plans, relationships, or other matters that ordinary individuals may not wish to discuss with strangers.Footnote 97 This raises an important question. Specifically, should patients have to divulge information in order to retain their legal rights to make their own medical decisions?Footnote 98 For example, if a patient believes that prayer will result in healing, should patients be required to disclose their religious beliefs to health care providers, and should these beliefs be subject to investigation by health care providers?Footnote 99
This Article does not argue that patients should not divulge information about their values and beliefs. Indeed, discussing treatment options with their health care providers in light of such information is the hallmark of shared decision-making, which many patients prefer, and which will likely result in an autonomous medical decision.Footnote 100 This Article instead asserts that patients should not be required to disclose such information if they prefer not to and that the privacy implications of treatment decision-making capacity assessments are underappreciated in the bioethical and clinical literature.Footnote 101
2. Accounting for the Negative Effects of Capacity Assessment, Determination of Incapacity, and Decision-Making Disqualification on Patient Wellbeing
If a patient has been expressing stable preferences (despite their decisional impairments), this is something that others should take seriously in order to promote patient wellbeing.Footnote 102 Even if an individual lacks capacity, they retain the interest in maintaining bodily integrity,Footnote 103 and if they are conscious, they can experience a decline in wellbeing if they are treated in a manner that conflicts with their wishes.Footnote 104
Indeed, it is important to consider the effect of the capacity assessment process and determination of incapacity on the patient’s wellbeing.Footnote 105 When a patient is subjected to a formal assessment of their decisional capacity and is deemed “incapacitated,” this can be damaging to their sense of self and to their subjective wellbeing.Footnote 106 Additionally, if the effect of such a determination means that providers forcibly override their patient’s contemporaneous treatment refusals, this will have a profoundly detrimental effect on patient wellbeing, including medical wellbeing.Footnote 107 Even if the patient assents to treatment, if they are marginalized in the medical decision-making process, this can decrease wellbeing because many patients report a desire to participate in decision-making that affects them even if someone else ultimately makes the decision.Footnote 108
Additionally, formally assessing capacity may be too physically burdensome for some patients, including those who are very sick or actively dying.Footnote 109 Insisting on assessments under such circumstances may have the effect of not allowing patients to make the decision,Footnote 110 to the patient’s detriment.
These potential adverse effects on patient wellbeing should be considered prior to formally assessing capacity. Indeed, these negative effects on patient subjective wellbeing may be so great and the expected benefits to patient objective medical wellbeing from substitute decision-making so marginal that patients should be permitted to make contemporaneous medical decisions despite suspected cognitive impairments without having to endure the capacity assessment process.
3. Using Capacity Assessments to Exert Power over Patients
Experts in the science of capacity assessment note that “[c]apacity assessments are ultimately human judgments occurring in a social context. It is therefore crucial that we understand how clinical judgments of decisional capacity relate to the social dynamics of decision making.”Footnote 111
One important consideration about the context of capacity assessments concerns power dynamics in the patient-provider relationship. In the medical setting, physicians and other clinicians have more power than patients.Footnote 112 There are many reasons for this power imbalance, including physicians’ greater medical knowledge, their exclusive right to provide medical services and their subsequent ability to function as gatekeepers to desired treatment, their high status in society, and patients’ medical vulnerability.Footnote 113
Although physicians most likely have noble motives (e.g., helping patients), they can use their power over patients along with assessments of capacity to direct the ultimate medical decision and determine who makes it (i.e., paternalism persists).Footnote 114 For example, patients’ capacity may only be formally assessed (and their decisional authority subsequently removed) when they disagree with their physician or when there is conflict in the patient-provider relationship.Footnote 115 And if patients with decisional impairments are compliant or agreeable, they may never have their decision-making abilities assessed and thus may be permitted to “decide” (i.e., agree with their physician) even if they are incapacitated.Footnote 116 Moreover, when providers in hospitals request a formal capacity assessment from colleagues in the hospital’s psychiatric department, consulting psychiatrists may be pressured to find the patient incapacitated because that is what the treating physician wants.Footnote 117
Additionally, empirical studies have demonstrated that for medical decisions that are “controversial,” in their role as gatekeepers to treatment, physicians may impose stricter capacity requirements on their patients.Footnote 118 This has been documented in the context of patients seeking gender-affirming careFootnote 119 and in surveys of psychiatrists’ views of the capacity needed to access medical aid in dying.Footnote 120
Further, physicians can use their power over patients in combination with the capacity assessment process to ensure that medical logic is privileged in decision-making. Patients may make medical decisions based on non-medical factors (e.g., religious beliefs, family relationships, etc.), and when forced to justify their decisions to health care providers, their decisions may seem irrational even when they are not.Footnote 121 Questioning patient capacity in such circumstances is unwarranted.Footnote 122 It is also important to note that physicians are not experts in their patients’ values or beliefs, and so assessment of their patients’ capacity considering values and beliefs may be more appropriate for other types of clinicians (e.g., medical social workers).Footnote 123
In brief, capacity assessments implicate issues of power and control. Indeed, using a capacity assessment grants decision-making power to doctors instead of patients,Footnote 124 and as I have noted in prior work, this process can be abused by physicians who want to control the patient’s medical decisions despite the legal and ethical requirement to obtain their patient’s consent.Footnote 125 This is another way in which (in)capacity is constructed relationally and contextually. Patient (in)capacity in this context is a property of the patient-physician relationship and relationships between health care providers.
D. Potential Legal Problems with Capacity Assessments
This section will discuss the legal implications of preventing adult patients from making their own medical decisions based on the incapacity exception to the informed consent requirement. The first section discusses how sometimes providers unlawfully presume incapacity and disqualify patients from making contemporaneous decisions. The second section discusses how providers may not know or follow the requirements for capacity in their jurisdiction. The third section describes the special instance of capacity for treatment refusals. The final section discusses capacity assessments and supported decision-making.
1. Presuming Incapacity Conflicts with Legal Mandate to Presume Capacity
Despite the criticisms present in this Article about assessing capacity, such an exercise is preferable to making assumptions about a patient’s decisional abilities based on diagnosis alone. Indeed, researchers have described how there may be a presumption that some individuals are incapacitated due to their medical conditions, such as schizophrenia or Alzheimer’s disease,Footnote 126 despite the fact that many such individuals are able to make decisions and despite legal, ethical, and clinical guidance to the contrary.Footnote 127 It is thus a legal problem if medical decision-making authority is removed from an adult solely on the basis of their diagnosis; therefore, in some instances, it can be problematic not to assess capacity.
2. Legal Standards for Capacity Differ by Jurisdiction and Type of Health Care Decision
Additional legal issues arise when capacity is assessed. For example, the standard for legal competence may differ by jurisdiction, and health care providers may not be aware of what standard governs their assessment.Footnote 128 Providers who work in hospitals may instead rely on the hospital organizational policy without understanding that their legal obligations may differ from this policy. This misunderstanding may result in a patient being unlawfully deprived of a fundamental right to maintain bodily integrity. Similarly, the jurisdiction’s legal standard for capacity may differ by type of health care decision,Footnote 129 and if providers use a single capacity standard, some patients may be disqualified from decisions they are, in fact, able (cognitively and legally) to make.
3. Capacity Assessments Should Not Be Required for Treatment Refusals
Another legal implication concerns the special context of treatment refusal (compared to treatment consent). Although physicians are legally required to disclose information to their patients as part of the informed consent process, patients generally have no legal duty to disclose any information to their health care providers.Footnote 130 This lack of legal duty includes a lack of duty to participate in a capacity assessment in the case of treatment refusals.Footnote 131 When patients are seeking particular treatments, physicians can condition access to the treatment on patient disclosure of some types of information because (absent special circumstances) providers are entitled to use their professional judgment to decide whether providing a specific treatment is medically appropriate based on information available to them.Footnote 132 However, when the patient is refusing medical intervention, given the law’s respect for maintenance of bodily integrity, physicians’ judgment of the soundness of their patient’s decision to refuse medical intervention should have limited legal relevance.Footnote 133 In instances of treatment refusal, the only capacity that must be assessed or demonstrated is the ability to communicate “no.”Footnote 134
4. Capacity Assessments May Conflict with Supported Decision-Making and Other Disability Laws
There are also legal questions about the appropriateness of assessing decisional capacity and removing decision-making authority from patients with disabilities. The Americans with Disabilities Act requires that health care providers, as places of public accommodations,Footnote 135 reasonably accommodate patients with disabilities and ensure effective communication.Footnote 136 This means that health care providers must explore alternatives to disqualifying their patients with cognitive and other impairments from making their own decisions, including providing access to assistive technologyFootnote 137 or allowing decisional support to increase capacity or assist with communication,Footnote 138 both of which can be considered “reasonable accommodations.”Footnote 139 The latter option is known as supported decision-making, which many states now provide as an option to persons with cognitive impairments as an alternative to guardianship and substitute decision-making.Footnote 140
Supported decision-making is premised on principles of self-determination and equality under the law.Footnote 141 The development of supported decision-making models and their adoption into law is responsive to the United Nations Convention on the Rights of Persons with Disabilities Article 12 “Equal Recognition before the Law” that directs that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and that parties to the Convention must “take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.”Footnote 142
With supported decision-making, an adult with a cognitive disability enters into an agreement with someone they trust to assist them with making decisions.Footnote 143 The ultimate decision-making authority (under state law) lies with the person with the disability,Footnote 144 but they may ask their supporter(s) to assist with gathering information, thinking through their options, and communicating the decision to third parties, as well as other decision-making tasks.Footnote 145 The goal of supported decision-making is for a person with cognitive impairments to be self-determining, and supported decision-making is consistent with the concept of relational autonomy.Footnote 146
Importantly, current supported decision-making laws in the United States direct that third parties rely on formal agreements, which means that a patient with such an agreement who may otherwise be deemed incapacitated by their providers may be entitled as a matter of law to make their own decisions.Footnote 147 Separate but related, if providers disqualify their patients from making their own medical decisions when these patients may be able to demonstrate capacity with support from others, this also may violate state informed consent law.Footnote 148 Such circumstances also ignore the relational components of capacity, autonomy, and decision-making.
Although supported decision-making is not the law in all states,Footnote 149 it is becoming a more common legal option and can be used informally or as a “reasonable accommodation” even in states without such laws.Footnote 150 Scholars and health care providers thus need to grapple with how supported decision-making matters for the understanding and demonstration of capacity. As I have written previously, supported decision-making “troubles the reliance on capacity assessments and surrogate decision makers in healthcare settings” and “is inconsistent with … use [of] capacity assessments to disregard the contemporaneous preferences of patients with decisional impairments.”Footnote 151 And this Article argues that because (in)capacity is, in part, a property of relationships, scholars should study whether and how capacity can be strengthened through supported decision-making.
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In conclusion, there are debates about how capacity is conceptualized, and there are many problems with how capacity is measured and assessed.Footnote 152 There are also ethical and legal implications related to assessing capacity.Footnote 153 The legal implications of scholarly arguments are often ignored by scholars of medicine or philosophy and by clinicians.Footnote 154 However, as I have argued in prior work, ignoring the law of medical decision-making leads to the erosion of the rule of private law.Footnote 155
To address some of these issues, the next Part will discuss proposals for future use of capacity assessments for medical decision-making, based on a conceptualization of (in)capacity as relational and contextual, and in consideration of the increase in supported decision-making agreements and relationships recognized and facilitated by law.
III. Using Capacity Assessments for Medical Decision-Making: Proposed Reforms
Given differences in how capacity is understood and the many problems with how capacity is measured, some may argue that capacity assessments should not be used in clinical practice.Footnote 156 However, this prospect will likely prove too difficult to obtain widespread agreement among stakeholders such as lawmakers, judges, and clinicians or even patients and their families.
An alternative proposal, based on the principles of equal treatment and beneficence, is to assess the decisional capacity of every patient, especially if the patient is facing a serious medical decision.Footnote 157 Of course, formally assessing the capacity of every patient would increase significantly the length of the clinical encounter, result in substantial financial costs, seriously interfere with patient autonomy, and inappropriately increase providers’ power and authority over patient decisions.Footnote 158 Further, any benefits would likely be primarily dignitary in nature (i.e., symbolic) and thus insignificant relative to the many material costs. For these reasons, a proposal to formally assess every patient’s capacity would also likely fail to be adopted.
So, on the assumption that the status quo continues wherein only some patients will have their decisional capacity assessed, the following sections offer some feasible reforms to capacity assessments that could be adopted to ensure that patients can exercise contemporaneously their legal medical decision-making rights and to promote patient agency, wellbeing, and bodily integrity. All the proposed reforms are based on the conceptualization of (in)capacity as relational and contextual in nature and would require that others change how they communicate with patients and require modifications to the decision-making environment to strengthen patients’ decisional capacity.
The first section recommends changes prior to the assessment, focusing mainly on changes to clinical practice and institutional policy that would have the effect of increasing patients’ decision-making abilities and reduce the need for capacity assessments and substitute decision-making. The second section recommends changes to the assessment process, focusing on changes to the capacity assessment instrument and changes in law, again with the aims of increasing patients’ capacity and decreasing the number of patients disqualified from making contemporaneous medical decisions. The third section recommends changes after the assessment to preserve patients’ wellbeing.
A. Before the Assessment
(In)capacity is not primarily a property inherent in a patient but instead is a property of the patient’s cognitive abilities and affective state in interaction with their providers, environment, relationships, medications, and illness or medical condition. (In)capacity is influenced by many factors, some of which the provider can change to strengthen the patient’s decision-making abilities. This section discusses how changes to clinical practice and hospital policy (rather than legal change) can support patients’ decisional capacity.
As a first matter, providers should exercise patience in clinical encounters. If providers have reason to suspect that their conscious and communicative adult patient may have impaired decision-making abilities, the provider should try to determine if there is a possibility that their patient’s abilities may improve with time or in a different environment; and if circumstances warrant, providers should wait until the patient regains capacity before a medical decision is made.Footnote 159 It may be the case, for example, that their patient is under the influence of psychoactive substances that are impairing the patient’s cognition and that if the patient discontinues use of those substances, their decision-making abilities will improve.
Providers can also try to address medical issues that may be affecting their patient’s decision-making abilities before focusing on other medical decisions.Footnote 160 It may be the case, for example, that the patient is in acute pain and can barely communicate, but if their pain was adequately managed, they would be able to discuss other medical circumstances. Instead of trying to formally or informally assess the patient’s capacity, deeming the patient incapacitated, and turning to others to decide on the patient’s behalf, providers should instead focus on the patient’s medical condition or environment and try to intervene to restore decisional capacity.Footnote 161
If health care providers work in hospital settings that provide a capacity assessment consultation service, hospital policy should direct that providers be asked whether the motivation for the requested assessment is that their patient has disagreed with their recommendations or is using a non-medical logic to make medical decisions (e.g., deciding based on religious beliefs or family relationships). In such cases, the consulting service can remind the physician requesting the consultation that these are insufficient bases for questioning decisional capacity and redirect the physician to have further conversations with their patient before turning to a capacity assessment. Hospital policy can also prompt providers to ask their patients whether they would like to include family or supporters in health care discussions,Footnote 162 which may help the decision-making process by strengthening patient capacity.Footnote 163
Finally, physicians should change how they communicate with their patients to try to ensure that patients, with or without cognitive impairments, can achieve understanding of their medical situation. Researchers have found that all patients evidence better understanding when information is given piece by piece instead of all at once, and so physicians may be able to avoid questions about patient capacity if they alter their communication style, especially if they are willing to repeat information and allow patients opportunities to ask questions.Footnote 164 Further, physicians can use patient decision-making aids to supplement their oral disclosures so that patients have additional sources of information to which they can refer at different points in time.Footnote 165 Finally, providers can adapt their interaction style to improve communication by facing their patients when speaking to them, limiting noise and distractions (e.g., from televisions), and avoiding jargon.Footnote 166
If the relational and contextual aspects of patient (in)capacity are recognized by health care providers — both physicians and hospitals — and efforts are made to strengthen patient capacity and allow patients to make medical decisions to the extent they desire, then patients can exercise autonomy contemporaneously, experience increased subjective wellbeing, and maintain their bodily integrity.
B. The Assessment
It may be the case that a patient’s decision-making abilities cannot be improved by changing the decision-making environment, the physical, mental, or emotional state of the patient, or physician communication style and that health care providers may still wish to know if their patient is able to make their own decisions. Therefore, capacity assessments will remain a reality in clinical practice. This section thus proposes some changes to the process of the assessment — in clinical practice, institutional policy, and the law — to acknowledge the relational and contextual nature of capacity and promote patient agency, wellbeing, and bodily integrity.
1. Change Who Assesses Capacity
The initial set of proposed changes targets clinical practice and institutional policy rather than legal change. First, given that capacity may only be formally assessed in cases of patient-provider disagreementFootnote 167 and that sometimes psychiatrists who are asked to formally assess capacity may feel pressure to find the patient incapacitated,Footnote 168 it is important that patients be given the choice of an objective, independent, non-conflicted clinician to perform the formal capacity assessment.Footnote 169 This proposal recognizes the complex web of relations in the health care setting that can influence whether patients are able to exercise autonomy contemporaneously by participating in medical decision-making, and the proposal can function as a safeguard against abuses of the incapacity exception to the requirement of obtaining patient consent to treatment. This proposal also reduces treating physicians’ power relative to their patients’ exercise of rights meant to protect patients’ bodily integrity.
2. Facilitate Communication during the Capacity Assessment
Second, “optimal assessment conditions should be prioritized to increase rates of autonomous decision making.”Footnote 170 As a first matter, this means that the assessment should be in a language in which the patient is comfortable, and failing this, a medical interpreter should be available to ensure the patient understands the questions asked and the provider understands the patient’s answers.Footnote 171
Relatedly, if there are comorbidities that may inhibit communication, these should be addressed or accommodated. This would include, for example, if the patient has difficulty speaking, but is able to write, type, or point at words/images/symbols or indicate their preferences through blinking. These alternative responses should be accommodated.Footnote 172 And if the patient has difficulty hearing, sign language interpreters should be provided (if this would be of use to the patient), patients should be provided other technology to assist with hearing, or they should receive information and be asked questions in alternative formats (e.g., writing). Indeed, these “comorbidities” used as illustrations are disabilities, and reasonable accommodations must be made under the Americans with Disabilities Act.Footnote 173 Further, this understanding of how physical disabilities may make it difficult for some patients to demonstrate decisional capacity is reflected in the most current version of the Uniform Health-Care Decisions Act, which notes that the communication criterion of capacity can be demonstrated with “appropriate services, technological assistance, … or other reasonable accommodation.”Footnote 174
Finally, the assessment should account for the patient’s level of educational attainment and literacy and be adapted accordingly.Footnote 175 Indeed, all communication, including in the instrument used for capacity assessment, should be free of medical jargon, and the pace of conversation should be slow with frequent pauses.Footnote 176
If these changes are made, then it is possible that more patients will pass the capacity assessment (i.e., demonstrate capacity). Regardless of the results of the assessment, however, there can be more confidence of the findings related to the patient’s cognitive abilities if the proposed changes occur.
3. Incorporate Supported Decision-Making in Capacity Assessments
Most importantly, given the relational nature of (in)capacity and the rapid spread of supported decision-making as an option recognized and facilitated by state law, capacity assessments should be modified to account for the presence of and decision-making assistance provided by supporters.
Because of the relative novelty of supported decision-making in the United States,Footnote 177 existing formal capacity instruments need to be adapted to assess whether a patient with decisional impairments can evidence capacity with support from others. The instrument should include a role for supporters (and this may require re-validation of the instrument).Footnote 178 The role of supporters in the process of assessing a patient’s capacity can take many forms,Footnote 179 of which full exploration is beyond the scope of this Article. In brief, supporters may provide information to the patient during the assessment, rephrase questions from or information provided by the assessors, assist the patient in reflecting on their values and preferences, or help communicate the patient’s responses to the assessor.Footnote 180 Research also then should be conducted about how decisional supports affect patients’ decision-making abilities as measured by formal capacity assessments and whether and how the type of decision-making support provided matters, the relationship between supported person and supporters matters, and type of cognitive impairments matters to the demonstration of capacity.
Given the well-documented reality that physicians do not understand their legal obligations to patients with disabilities,Footnote 181 incorporating supported decision-making in the capacity assessment process requires other changes, especially for informal capacity assessments. For example, medical education must include information on how federal disability law applies to the practice of medicine and the concept of supported decision-making.Footnote 182 Health care providers also need to know whether their state has supported decision-making legislation.Footnote 183 This may be a role for hospital policy, which can provide such information to physicians.
Importantly, providers should understand the difference between supporters, health care power of attorneys, substitute decision-makers, and guardians. This knowledge would (in theory) affect the provider’s informal capacity assessments of their patients. Instead of disqualifying their patients from making their own decisions, they may instead ask whether their patient has anyone who could assist with treatment decision-making or ask whether the state has a supported decision-making agreement. Formal capacity assessment instruments can also be modified to explicitly prompt the clinician administering the assessment and the patient being assessed to recommend that patients include their supporters in the assessment process and that if they do not have supporters, that they seek them out prior to the assessment.
4. Highlight Supported Decision-Making in Multiple Areas of State Law
As discussed in the previous section, health care providers need more clarity about supported decision-making and the rights of their patients with cognitive and communication disabilities.Footnote 184 States thus should cross-reference all laws that reference capacity, including medical decision-making laws, with the state’s supported decision-making statutes (if the state has adopted formal supported decision-making). State laws referencing capacity should also include a brief discussion of supported decision-making, so that it is clear to policymakers, judges, lawyers, clinicians, and the public that they should consider the implications of supported decision-making for the demonstration of decisional capacity.
Indeed, although some states have adopted supported decision-making legislation that contemplates that individuals could demonstrate capacity with support,Footnote 185 this information may remain effectively hidden without additional legislative efforts to highlight it by amending other parts of the statutory code. For example, California’s supported decision-making statute directs that “[t]he capacity of an adult should be assessed with any supports, including supported decisionmaking, that the person is using or could use”Footnote 186 and that “[s]upported decisionmaking can be a way to strengthen the capacity of an adult with a disability.”Footnote 187 It is not clear, however, that individuals reading California’s body of informed consent case and statutory law or other medical decision-making laws would know about supported decision-making, because it is not referenced in these other areas of law.Footnote 188
Some specific medical decision-making laws also recognize that other people may help individuals demonstrate capacity (i.e., these laws recognize the relational nature of capacity),Footnote 189 but because this information may not be in the state’s informed consent statute, this recognition may not be extended to general medical decision-making even when it would be appropriate. For example, the Oregon Death with Dignity Act, which legalizes medical aid in dying for some terminally ill adults, states that capacity is defined as “the ability to make and communicate health care decisions to health care providers, including communication through persons familiar with the patient’s manner of communicating if those persons are available.”Footnote 190 Providers who are not involved in medical aid in dying, and thus not necessarily familiar with this law that references communication assistance from others to increase patient capacity, may not realize that this type of decisional support can also be applied to other types of medical decisions.
In brief, supported decision-making can potentially increase decisional capacity and facilitate the exercise of contemporaneous relational agency for persons with cognitive impairments.Footnote 191 Supported decision-making can also increase the subjective wellbeing of and promote equal treatment for persons with cognitive impairments.Footnote 192 Capacity assessments should adapt to include a role for supported decision-making, and state laws should publicize how decisional support can increase capacity.
C. After the Assessment
Even if the above changes are adopted, some patients will still be unable to demonstrate decisional capacity. However, if a finding of incapacity results in someone else having legal authority to make decisions on the patient’s behalf, this does not mean the patient ceases to retain interests in experiencing wellbeing, exercising agency to the extent possible, and maintaining bodily integrity.Footnote 193
Indeed, care must be taken to preserve a patient’s sense of dignity and wellbeing after the capacity assessment.Footnote 194 Providers should not use words such as “fail” or “lack capacity” and should instead consider framing the situation as an opportunity for the patient to receive assistance in making medical decisions according to the patient’s goals, values, and preferences.
There should also be efforts to support the patient’s agency, which is closely connected to the patient’s sense of subjective wellbeing.Footnote 195 As other scholars of capacity have also asserted, patients who lack capacity can, in some instances, still be afforded the opportunity to make their own medical decisions.Footnote 196 There should be discussion of what kinds of medical decisions such patients may be permitted to make. Perhaps they can make decisions that are less serious or risky. Or maybe they can make decisions to refuse but not choose a treatment.Footnote 197 Further, when looking to advance directives and substitute decision-making based on precedent autonomy or best interest standards, providers should try to incorporate the patient’s current interests and expressed preferences to the extent possible to maintain patient wellbeing.Footnote 198
It is also imperative that health care providers take care to respect the personhood of their conscious patient with decisional impairments, particularly when touching the patient’s body to provide treatment or care, given the patient’s interests in maintaining bodily integrity.Footnote 199 Providers should seek patient assent to touching (or at a minimum, non-dissent)Footnote 200 and avoid, when possible, interfering with the patient’s body in a manner upsetting to the patient. Although the providers’ goal is to ensure good medical outcomes, such outcomes are more likely if patients are not mistreated during the clinical encounter.Footnote 201
Finally, individuals must always be able to challenge the finding of incapacity. Should the assessment occur in a hospital, the hospital should provide another opportunity for patients to demonstrate capacity. And judicial review should also be available to patients given that legal rights and interests are at stake,Footnote 202 including maintenance of bodily integrity, respect for patient autonomy, promotion of wellbeing, and preservation of life and health. Many argue against judicial review as a matter of course for questions about capacity,Footnote 203 but judges have a role to affirm the legal rights of patients and to ensure that the capacity assessment process and incapacity exception to the informed consent requirement are not being abused.Footnote 204
IV. Other Considerations
Clinicians, scholars, judges, and others who hold traditional views about decisional capacity may object to some of the proposals offered in this Article. The primary objections likely relate to concerns about autonomy and wellbeing. More specifically, some may think that permitting patients with decisional impairments to make contemporaneous medical decisions is inconsistent with respect for patient autonomy and that it may lead to a decrease in the patient’s objective wellbeing.Footnote 205 This Part will first address concerns about autonomy before addressing concerns about wellbeing.
A. Relational Capacity, Relational Autonomy
The reason that capacity is assessed is because respect for patient autonomy is a primary goal of the law and ethics of informed consent, and the concept of capacity is defined by elements thought necessary to exercise contemporaneous autonomy.Footnote 206 Thus, proposals to reconsider how capacity is understood and assessed have implications for how patient autonomy is or is not respected. This Article argues that just as the exercise of autonomy in medical decision-making is often relational,Footnote 207 decisional capacity is also relational.
There is a temporal dimension to the exercise of and respect for autonomy. Typically, respect for patient autonomy means respecting the patient’s current decisions that are made with intention and understanding and absent coercion and undue influence (i.e., contemporaneous autonomy).Footnote 208 Respect for contemporaneous autonomy is the standard for conscious adult patients with typical cognitive abilities.Footnote 209 However, respect for patient autonomy may also mean respecting decisions made intentionally, voluntarily, and with understanding at some point in the past (i.e., precedent autonomy) and that are perhaps memorialized in an advance directive. Respect for precedent autonomy is often the standard used for patients who are not expected to regain capacity (e.g., patients with advanced dementia).Footnote 210 Finally, respect for patient autonomy could mean enabling the patient to make autonomous decisions at a future point (i.e., prospective autonomy). If a patient that lacks capacity, but is expected to regain capacity (e.g., patient with untreated psychiatric illness), they may be prevented from making contemporaneous decisions that could decrease the likelihood that they could exercise autonomy in the future.
Critics may argue that failure to demonstrate capacity to the satisfaction of a health care provider means that a patient is incapable of contemporaneous autonomy, and that in such instances respecting patient autonomy necessitates respecting precedent or prospective autonomy. In past work, I have argued that many patients with decisional impairments who may be considered incapacitated, can with decisional support, exercise contemporaneous autonomy if autonomy is understood as relational agency.Footnote 211 I offer the same arguments in support of the proposals to facilitate contemporaneous decision-making for patients with cognitive or communication impairments in this Article and assert that understanding capacity as relational and contextual in nature — something that can be strengthened or weakened through interaction with others and by changes to the decision-making environment — can facilitate respect for the contemporaneous autonomy of individuals with decisional impairments.
Admittedly, the proposals in this Article, if adopted, may in some circumstances be inconsistent with respect for a particular patient’s past and future exercises of autonomy. Sometimes a patient’s current wishes accord with their past wishes and probable future wishes, in which case permitting patients to decide — even if they are deemed to lack capacity — can be consistent with respect for autonomy however it is defined. However, if the patient’s current wishes differ from their past wishes or predicted future wishes, allowing them to decide based on their current wishes will conflict with respect for their precedent and prospective autonomy.Footnote 212 Given the extensive problems with capacity assessments listed in this Article and the important interests in ensuring the patient’s subjective wellbeing and maintenance of bodily integrity, current preferences should be privileged even if they are inconsistent with respect for autonomy — precedent, contemporaneous, or prospective.Footnote 213
Further, if someone uses supported decision-making to plan for cognitive decline,Footnote 214 this is strong evidence that they want to maintain autonomy for as long as possible, even when experiencing decisional impairments, which means they have contemplated a future where they may make decisions differently than they do in the present.Footnote 215 This would also weigh in favor of respecting a patient’s current choices despite their decisional impairments.
B. Adopting Proposals Can Promote Patient Wellbeing
Another major objection to the proposals in this Article concerns the potential negative implications for patient wellbeing. Typically, health care providers are concerned about patients’ medical wellbeing — ensuring their patients live, do not acquire disabilities, and do not experience a decline in health status.Footnote 216 Providers may be concerned that patients with decisional impairments do not adequately understand medical information, apply information to their circumstances, or reason appropriately and thus will make a bad decision that costs the patient their life or health. As a result, providers may want to, on grounds of beneficence and non-maleficence, protect patients from the consequences of poor decision-making and use capacity assessments to remove legal decision-making authority from patients with decisional impairments.Footnote 217
What providers (and others holding paternalistic views) may fail to adequately appreciate, however, is their patient’s global wellbeing, of which medical wellbeing is only one component. Many scholars and commentators advocating for the use of stringent capacity assessments and the disqualification of patients with decisional impairments from medical decision-making conclude their ethical analysis without considering the patient’s perspective when the patient is prevented from choosing a treatment they desire or from refusing a treatment they do not want.Footnote 218 Given that many patients want to participate in medical decisions, many will feel a range of negative emotions if they are excluded from or marginalized in the decision-making process, which is detrimental to their sense of wellbeing.Footnote 219
If a conscious patient is trying to refuse an intervention, but their contemporaneous refusals are overridden, physical force or sedation may be required to treat the patient over their objection. Use of force against patients to provide a treatment is inconsistent with promoting patient subjective wellbeing,Footnote 220 even if the patient has decisional impairments.Footnote 221 This fact is underappreciated in scholarly proposals to increase the requirements for demonstrating capacity (proposals that will result in fewer people being able to make contemporaneous medical decisions).Footnote 222 Aside from these considerations about subjective wellbeing, there are medical reasons to involve the patient in decision-making, such as enhanced treatment compliance.Footnote 223
Still other critics may view individuals with disabilities as needing special protection from outcomes such as death or decline in health status given the history of medical mistreatment and neglect of this patient population.Footnote 224 They may argue that it is cruel to not intervene in decision-making for individuals with cognitive impairments to prevent negative consequences. For this reason, some view individuals with disabilities as a vulnerable group and argue that they should be treated differently based on this vulnerability.Footnote 225 It is not clear, however, that making decisions on behalf of individuals with disabilities reduces their vulnerability compared to ensuring that they are able to make their own decisions. Indeed, the proposals in this Article are designed with patients with disabilities in mind and rely on insights from disability rights law and the disability justice movement to promote the agency, wellbeing, and equality interests of this population instead of resorting to stereotypes that individuals with disabilities as a class are vulnerable.
In brief, the proposals in this Article weigh patient subjective wellbeing more heavily than patient medical wellbeing (as perceived by providers or disability activists).Footnote 226
Conclusion: Moving Toward “Legal Capacity on an Equal Basis”
This Article builds on my prior work on the law and practice of medical decision-making. I have written extensively about how supported health care decision-making for individuals with cognitive impairments can enable self-determination for this patient population.Footnote 227 And, in the context of treatment refusals, I have argued for relaxing capacity standards to the minimum requirement of assessing a patient’s ability to communicate to maintain respect for bodily integrity and embodied autonomy.Footnote 228 Also, I have argued against incorporating an understanding requirement into the informed consent process given that this requirement is often not satisfied by individuals with typical cognitive abilities and can be weaponized against individuals with cognitive impairments, holding them to a higher standard to have their autonomy respected.Footnote 229
In the present Article, I have described how currently there is profound disagreement about how capacity should be understood (i.e., operationalized), and I have argued that there are problems with how capacity is assessed.Footnote 230 Specifically, I have argued that the traditional view of (in)capacity accounts for the cognitive abilities of the individual patient, but that (in)capacity instead should be understood as a property of relationships with others and one’s decision-making environment, mediated through one’s body and cognitive abilities.Footnote 231
Combining these insights about the relational and contextual nature of (in)capacity, the existing legal mandate to accommodate patients with disabilities so they can participate in contemporaneous medical decision-making, and the development of new models of decision-making (i.e., supported decision-making), this Article argues for extensive modifications to the capacity assessment process. The hope is that by adopting the proposals, more patients with decisional impairments will be able to make their own medical decisions at the time the decision needs to be made and that the decisions will be consistent with their preferences, goals, values, and interests (i.e., autonomous decision-making occurs).
These arguments are grounded in concerns for decisionally-impaired patients’ autonomy, bodily integrity, subjective wellbeing, and equality interests in the medical context. This decision-making context provides ample opportunities for patients to receive information and discuss their decisions, and for other parties to intervene if they suspect the patient has mistaken understanding of their medical circumstances or if they suspect the patient is being abused, neglected, or exploited.Footnote 232 All these factors may increase the likelihood that the patient will make contemporaneous autonomous decisions even if the patient has cognitive impairments.Footnote 233
However, given that my arguments rely on laws that are broader than informed consent law (i.e., state and federal disability laws),Footnote 234 analyze interests that matter beyond the clinical encounter (e.g., autonomy and wellbeing),Footnote 235 and refer to the construct of capacity, which is central to many areas of law,Footnote 236 questions arise about whether and how my arguments about autonomy, capacity, and decision-making should be extended beyond the context of medical decision-making.
Although this Article focuses on decisional capacity and assessments thereof for medical decision-making, formal capacity assessment instruments may be administered in other contexts to determine whether an individual has the requisite legal capacity to make decisions to which the law will defer. Findings of incapacity can include a range of legal consequences such as whether someone will be permitted to participate in clinical research or will be placed under guardianship.Footnote 237
If the proposals in this Article are adopted — and result in fewer capacity assessments for medical decision-making, the incorporation of supported decision-making in capacity assessments, and a relaxed standard for demonstrating capacity — should these proposals be accepted in other legal contexts?Footnote 238
Legal scholars are grappling with how to understand (in)capacity in various areas of law. Some have explored novel understandings of capacity for private law (e.g., “narrative capacity”).Footnote 239 And with respect to individuals with disabilities, other scholars have explored how federal disability law and state-supported decision-making statutes can expand the number of people who are deemed to have capacity.Footnote 240 There are many articles about changing guardianship and conservatorship law to reduce the number of individuals who have had their decision-making rights revoked.Footnote 241 Further, scholars have considered how supported decision-making may strengthen (or “boost”) testamentary capacityFootnote 242 and how the mental incapacity doctrine in contract law, which can be raised to prevent enforcement of a contract for individuals who did not understand the contract or its consequences, is inconsistent with the Americans with Disabilities Act.Footnote 243
Much of this work is responsive to the Convention on the Rights of Persons with Disabilities recognition that individuals with disabilities should “enjoy legal capacity on an equal basis,”Footnote 244 but this scholarship on capacity, disability, and supported decision-making is still in its early stages, and there is much more for legal scholars to explore.
For example, how should supported decision-making work for routine decision-making, including decisions that may have legal consequence? At present, supported decision-making agreements are structured according to a particular mode of decision-making. The agreement forms seem to contemplate decisional support for a discrete decision that is of some importance (e.g., deciding on a medical intervention or where to live or go to school) and which is made with extensive information and contemplation.Footnote 245 Yet, this is not how people make decisions most of the time.
Instead, individuals — including individuals with cognitive impairments — make many decisions each day, often with no information, understanding, or deliberation and maybe without perceiving intention,Footnote 246 and some of these decisions matter legally. For example, someone may be presented with an opportunity for a sexual encounter, decide to do something that may be a criminal or civil offense, or be asked to click “yes” on a terms and conditions agreement and have no time (or desire) to talk to others (including their supporters, if they have them) about their choices. If the individual has decisional impairments and would be considered to lack capacity, should their routine decisions made in the absence of support be a defense to liability? How can supported decision-making agreements and models be modified to account for routine, everyday decision-making? And what does “equal capacity” mean in the context of routine decision-making that could have legal consequences?Footnote 247
As another example of unanswered questions about supported decision-making and capacity, should capacity requirements be connected to specific legal interests, decision-making contexts, and potential stakeholders? I have argued that individuals who have entered supported decision-making agreements should be able to make medical decisions independent of their supporters even if the consequences are disability, illness, or death given the importance of bodily integrity and subjective wellbeing, because the benefits and burdens of the decision are borne primarily by the individual making the decision, and because the context reduces the possibility of mistake or abuse.Footnote 248 However, would it be ethical to impose criminal liability on individuals who under current understandings and measurements of capacity would be considered incapacitated, especially given the different interests (e.g., punishment, freedom, public safety, etc.) and stakeholders (e.g., the public)?Footnote 249 Or to hold such an individual to the terms of a contract they entered that may deplete their financial assets and given important associated interests (e.g., protecting vulnerable individuals, deterring exploitation or wrongdoingFootnote 250) and different actors and stakeholders (e.g., financial institutions, businesses, unscrupulous actors, etc.)? What is the role of supported decision-making, and how should legal capacity on an equal basis be understood in these non-medical contexts?Footnote 251
Should a determination of incapacity continue to be an option in other legal contexts, and should formal assessments that could be used as evidence in legal proceedings be retained? Assuming the answer is yes, how capacity is assessed still needs to be modified given principles of equal participation in legal institutions and the importance of the dignity of risk.Footnote 252 However, if capacity assessments become more valid and reliable in medical contexts, then perhaps they will be better tools in other contexts as well.
This Article offers criticism of current understandings and assessments of (in)capacity for medical decisions. However, the flawed process of capacity assessment along with new interventions to increase capacity such as supported decision-making have implications for other decision-making contexts that have legal consequences. This Article hopes to move the scholarly conversation about (in)capacity forward with the goal that individuals with impaired cognition will eventually attain “equal legal capacity.”
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