Navigating Autonomy: Enhancing Accuracy in Medical Decision-making Capacity Assessment

Abstract

Evaluating medical decision-making capability (DMC) is critical for maintaining patient autonomy and informed consent in health care. DMC refers to a patient’s ability to comprehend information about their treatment, recognize its implications, reason through the options, and articulate their decision. Several assessment techniques, including the Aid to Capacity Evaluation, the Hopkins Capacity Assessment Test (HCAT), Understanding Treatment Disclosure (UTD), and the MacArthur Competence Assessment Tool, have been discussed in this review. The legal distinction between decisional ability and competence is stressed, with courts making legal decisions based on expert testimony and healthcare providers conducting clinical assessments. The review also underlines the responsibility of physicians in assessing DMC and the need for continued monitoring in cases of shifting states such as delirium. This review emphasizes the importance of standardized training and robust tools for improving the accuracy and consistency of DMC assessments, ensuring that patient decisions are informed and autonomous.

INTRODUCTION

Evaluating medical decision-making capacity (DMC) is a critical aspect of patient care, particularly when there is concern that a patient may lack the ability to make informed decisions. Medical DMC encompasses the patient’s ability to comprehend the benefits, risks, and alternatives to the proposed treatment; appreciate the consequences of their decision, reason through the decision-making process; and effectively communicate their wishes. Informed consent is foundational to patient autonomy and involves providing patients with accurate information about treatment options in a manner free from coercion. However, the ability to make informed decisions can vary with circumstances and may necessitate a formal evaluation. Physicians often underdiagnose a lack of aptness, underscoring the need for a systematic approach to assessment.[1] Its importance lies in ensuring that patients retain autonomy over their healthcare decisions while safeguarding them from potentially harmful choices when their judgment is impaired. The ability to make decisions is assessed through four key abilities: understanding, choice expression, appreciation, and reasoning. Understanding involves the patient’s capacity to take in, process, and comprehend pertinent information. Choice expression evaluates whether the patient can make and communicate a decision based on the conversation. Appreciation measures the patient’s recognition of the circumstances and the potential consequences of their decision. Finally, reasoning assesses the patient’s ability to logically analyze information, compare the best options, and understand how this information affects their everyday reasoning. These abilities comprehensively evaluate a patient’s decision-making ability.[2] The implications of DMC in different clinical scenarios are significant and multifaceted [Figure 1]. In emergent situations, the necessity for immediate life-saving treatment often overrides the need for a thorough capacity assessment. However, in nonemergent situations, the physician must carefully evaluate the patient’s DMC, which depends on the complexity and risk associated with the treatment. For instance, a simple procedure with low risk and high benefit, such as drawing blood, may only require the patient’s simple assent. In contrast, a high-risk procedure with uncertain benefits, like a pneumonectomy for lung cancer in a patient with significant coronary artery disease, demands substantial reasoning and understanding from the patient. This “sliding-scale” approach underscores that the DMC required is proportional to the risk and benefit balance of the intervention.[3,4] Moreover, DMC is not synonymous with legal competence. An adult may be legally competent but still unable to make specific treatment decisions, which should be assessed by a physician rather than through legal means. This assessment should be tailored to the specific clinical situation and consider factors such as the patient’s understanding of their condition, ability to process information, and stability in decision-making. In scenarios where DMC is questionable, such as with patients who have cognitive impairments or are under significant stress, the physician must carefully evaluate their ability to understand, appreciate, and reason about their medical situation and the consequences of their choices. Careful inspection of DMC ensures the patient’s autonomy is respected while safeguarding their well-being.[5] Navin et al. identify various forms of DMC that allow patients to refuse medical treatment, specifically comparative, burdens-based, and goals-based DMC. They challenge the conventional, bioethical perspective that patients must possess detailed comparative judgment capacity to refuse treatment validly. Instead, they propose that moral authority to decline medical interventions can stem from overriding goals or objections to burdens, even without complex comparative analysis. This reconceptualization has significant implications for clinical practice and decision-making, particularly in pediatric ethics, where the child’s best interests and the roles of parents and providers are critical. While children may demonstrate burden-based or goal-based DMC, their limited understanding of potential costs associated with their decisions often makes them less likely than adults to possess such capacities fully.[6,7] This situation underscores the importance of respecting refusal decisions without delusion, coercion, or misunderstanding. It suggests that surrogate decision-makers should align with the specific DMC type the patient exhibits.[8] In addition, the authors argue that patients with comparative DMC are generally presumed to have genuine commitments to their stated values. In contrast, those without such capacity may need more scrutiny to ensure the validity of their reasons for refusal, necessitating a re-evaluation of current clinical practices to honor patient autonomy effectively.[9]

Figure 1.

Justification for requesting Medical Capacity Assessment

Capacity assessment practices differ worldwide, reflecting diverse legal, cultural, and clinical approaches to balancing patient autonomy and protection in mental health care.[10] In Japan, psychiatrists frequently resort to involuntary admission for individuals with psychosocial disabilities, justifying this approach based on a deemed lack of understanding and a need for protection,[11] highlighting challenges in envisioning alternative systems and underscoring the role of family wishes and adherence to the Mental Health Act during crises. In contrast, the Australian study critiques the narrow focus on legal capacity under the United Nations Convention on the Rights of Persons with Disabilities (CRPD), advocating for a holistic approach emphasizing voluntary care, individualized support, and the right to health and independent living. Australian reforms stress developing robust voluntary mental health services to reduce reliance on involuntary treatment, aligning with broader CRPD obligations.[12] In the USA, DMC in clinical settings is determined by the Mental Health Parity and Addiction Equity Act and various state laws, which mandate parity between mental health and physical health services.[13] Like Australia, the USA emphasizes protecting patient rights and autonomy, supporting decision-making models, and voluntary treatment options, though involuntary treatment remains prevalent under strict conditions to prevent harm. While Japan, Australia, and the USA share challenges in balancing legal and mental capacity with the need for protection, their approaches differ: Japan relies heavily on involuntary admission and family input, Australia promotes holistic reforms emphasizing voluntary care, and the USA focuses on parity laws and supported decision-making underscoring the need for robust capacity assessments and individualized support to uphold patient rights and improve mental healthcare outcomes.

Assessing mental capacity in older medical inpatients presents a complex and multifaceted challenge for healthcare professionals. As the population ages, the prevalence of conditions that can impair cognitive function, such as dementia and delirium, increases.[14] This demographic shift necessitates frequent mentality assessments to verify the decision-making capacities of patients. One of the primary challenges is the high rate of delirium among older inpatients, which can significantly impair decision-making abilities. Delirium is often underdiagnosed and can fluctuate, making it challenging to assess capacity consistently. Conditions such as dementia, schizophrenia, or intellectual disabilities do not automatically imply a lack of capacity; instead, a nuanced evaluation is required to determine if an individual can make informed decisions about their medical treatment.[15]

Furthermore, the decisions that require capacity assessments, such as those related to discharge planning and treatment options, are often complex and carry significant consequences for the patient’s health and well-being.[16] Another significant challenge is standardized training and support for healthcare professionals conducting these assessments. Hospitalist doctors, who frequently perform capacity assessments, may need more specialized training in this area, leading to variability in assessment outcomes. This inconsistency can result in either the unnecessary restriction of a patient’s autonomy or the failure to protect the patient’s rights to make informed decisions, which has prompted psychiatrists to be asked to perform capacity assessments for patients. Tools such as the Aid to Capacity Evaluation (ACE) can assist clinicians.[17] A stepwise approach is recommended, which includes assessing for communication barriers, reversible causes of incapacity, and understanding patient values.[2] Directed clinical interviews, formal capacity assessment tools, and cognitive testing can further aid in determining capacity. Consultation with another clinician, such as a psychiatrist, may be warranted in persistent uncertainty. The role of surrogate decision-makers and thorough documentation is also a crucial component of the capacity assessment process. This review aims to provide a comprehensive overview of the principles and practices of evaluating medical DMC.

HOW TO DETERMINE MEDICAL CAPACITY: STEPS AND PROCESS

Medical DMC involves four key dimensions: communication, understanding, appreciation, and rationalization or reasoning. Communication requires a patient to clearly express and maintain a stable treatment choice, with frequent indecisiveness potentially indicating psychiatric issues. Understanding means the patient can recall treatment discussions, understand causal relationships, and process outcome probabilities, with impairments in memory, attention, and intelligence affecting this capacity. Appreciation involves recognizing the illness, treatment options, and likely outcomes as directly impacting the patient, with denial or delusions potentially hindering this recognition. Rationalization or reasoning entails the ability to weigh the risks and benefits of treatment options according to personal values and goals, often affected by mental health conditions such as psychosis, depression, and dementia. Evaluating these dimensions helps healthcare providers ensure that patients’ treatment decisions are both informed and autonomous.[18]

MEDICAL CAPACITY ASSESSMENT TOOLS

Several assessment tools are available to evaluate medical DMC [Figure 2]. These include ACE, the Hopkins Capacity Assessment Test (HCAT), the Understanding Treatment Disclosure (UTD), and the MacArthur Competence Assessment Test (MacCAT-T). ACE is considered the best available online tool due to its ease of use and clear instructions; it provides a positive likelihood ratio (LR) of 8.5 for determining medical decision incapacity.[19] Although HCAT is quick and effective, with an LR score of 54, it only helps in processes requiring DMC transfer to a surrogate decision-maker rather than the patient’s capacity to make specific decisions.[1] UTD has an LR score of 6.0 and is considered a precursor assessment tool for the MacCAT-T instrument. MacCAT-T uses a semistructured interview technique to assess four abilities of medical DMC.[20] Among the four instruments designed to be tailored to the individual situation, the MacCAT-T has been validated in various populations, has demonstrated high reliability and construct validity in several contexts, and appears to be the most widely used in studies of healthcare DMC.[21] When an adult patient lacks DMC, an advanced directive, or a surrogate decision-maker becomes the primary decision-maker. However, suppose an incapacitated patient is unrepresented by the primary decision-makers. In that case, the physician on duty must decide for the incapacitated patient or appoint a surrogate decision-maker who can be patient-identified, court-appointed, or physician-appointed[22] [Figure 3a and b].

Figure 2.

Overview of Medical Capacity assessment tools, which include the Aid to Capacity Evaluation, Hopkins Capacity Assessment Test, Understanding Treatment Disclosure, and McArthur Competence Assessment Test

Figure 3.

(a and b) Different decision capacity assessment tools with details of evaluation. MacCAT-T: MacArthur Competence Assessment Tool for Treatment

LEGAL ASPECTS OF CAPACITY DETERMINATION

In a legal process, the court takes input from many licensed mental health practitioners, such as a psychologist and a neuropsychologist who have evaluated a patient’s ability of DMC. This action aims to decide if the patient is legally competent to make their own decisions. Important to note, however, is that a patient’s legal competence status is not the same as the result of a clinical evaluation of their decisional capacity. Although clinicians in the field complete the patient’s decisional capacity evaluation, the court decides if the patient is legally competent after expert testimony from the many licensed mental health practitioners mentioned above.[21] The clinician does not get legal competency status on every patient they see before initiating the treatment. Yet, the clinician still needs to ensure that all patients can provide valid informed consent. The ability to use consent is one of the requirements for valid consent. The ability to use the knowledge given to make a sincere decision is one characteristic that makes consent genuine. Therefore, the physician is expected to consider the patient’s capacity for decision-making, even if there is no reason to believe that a formal court procedure will be necessary. In this sense, a psychologist or neuropsychologist can take on one of two roles: either they act as the patient’s clinical care provider, assessing the patient’s capacity for the clinical procedures they are starting, or they act as a consultant for another clinician, who comes to them with questions about the patient’s capacity for making decisions. It is crucial to remember that, even in cases where it is determined that a person cannot presently make healthcare decisions, efforts should still be made to involve them as much as possible in decisions about their course of treatment. These efforts entail re-evaluating capacity if the individual’s mental health improves or circumstances change.[23]

Why should the physician assess the capacity instead of a psychiatrist?

While psychiatrists are considered to be the experts in assessing the capacity of patients, primary care physicians and hospitalists are qualified to perform capacity assessments as well. An assessment provided by primary care physicians holds the advantage of knowing the patient’s medical conditions and having the best opportunity to see the patient’s and family’s personal, cultural, and religious views. The capacity assessment by a physician is not just a one-time visit but a more thorough and longitudinal assessment based on multiple interactions. Due to ongoing care, they are also best positioned to re-evaluate capacity based on circumstances.[24] Delirium is one of the most prevalent conditions among admitted patients who may have fluctuations in their cognition. Its prevalence ranges from 10% to 30% among the general hospital admissions.[25] Impaired decision-making ability due to reduced and fluctuating cognition is a big challenge, causing clinicians to perform assessments repeatedly, reinforcing the requirement for robust training in the practical application of capacity assessments and their principles.[16] Thus, the role of psychiatrists can be confined to complex cases, during more expert evaluation in patients with severe mental illness, or to fulfill legal requirements.[24]

DISCUSSION

In April 2007, the Mental Capacity Act 2005 was implemented, and various surveys were performed to assess the knowledge of psychiatrists and physicians from all walks of the field.[26] Using the Montreal Cognitive Assessment, Kwan et al. conducted a cross-sectional analysis of cognitive impairment among dialysis patients in South Eastern Sydney. One hundred and six participants were involved, and 58 (54.7%) participants were deemed cognitively impaired. Psychiatrists recognized 52/58 as either dementia or cognitively impaired. Nephrologists suspected 36/58 participants to be cognitively impaired, but only 14/58 (24.1%) participants were documented. Even though cognitive impairment is common among dialysis patients, low levels of detection are a cause of concern.[27] Volicer and Ganzini surveyed to determine the DMC element that physicians deemed essential. Fifty-four percent of respondents varied in how often they performed capacity assessments. Almost 75% of psychiatrists, 40% of geriatricians, and 17% of psychologists had performed capacity assessments in the previous year. Among the EAC chairs, 30% assessed capacity independently, 26% in some cases, and 44% rarely or never.[28] McFarland et al. conducted a retrospective chart review of 97 consecutive psychiatric consultations from 2017 to 2019. Of 97, 56 (59%) failed to demonstrate capacity. Only 5% of the total was evaluated by the primary team themselves. Of the ones done by the psychiatrist, only 22% documented all four capacity determinants. They pointed out the need for standardization and rigor in the documentation of DMC evaluation.[29] Chan et al. reviewed medical records of 37 females and 26 males, of which 33.3% had no psychiatric diagnosis. He documented that assessments conducted by the physicians were suboptimal, while those by consultation-liaison psychiatrists were more detailed. Mental capacity assessment (93.7%) and psychiatric diagnosis (88.9%) were mentioned with intricate details. Despite that, both the bodies failed to point out patient wishes (19%), the presence of a lasting power of attorney or court-appointed deputy (6.3%), or advance care planning (0%).[30] Schofield inspected the awareness and implications of mental capacity assessment using a questionnaire. Hundred percent of physicians and about 70% of psychiatrists answered incorrectly. Most of them lacked knowledge, and a statistically significant difference in knowledge was observed between the two groups.[26] Jackson and Warner assessed the knowledge of capacity through a cross-sectional survey with a structured questionnaire. Of the 129 who responded to the questionnaire, correct answers were given by 58% of psychiatrists, 34% were geriatricians, 20% were general practitioners, and 15% were students. However, they noted a lack of knowledge about treatment against the will of a competent adult, with no significant difference among specialties. He concluded undergraduates and postgraduates would benefit more from attention to capacity assessment and related issues.[31] Peisah et al. used a modified Delphi approach for the capacity education etool. It consisted of a pretest, a learning module based on pretest responses, and a posttest with the same questions. This model was applied among varying specialties around the globe, including 19 general practitioners, 1 internal medicine specialist, 1 palliative care general practitioners, 2 palliative care physicians, 2 geriatricians, 1 psychologist, 1 occupational therapist, 1 psychiatrist, 1 aged care researcher, and 1 aged care pharmacist. Test scores showed a significant improvement (P < 0.0001), demonstrating that generic capacity principles can be preached to healthcare professionals irrespective of the borders.[32] The World Health Organization highlights “education and support... as an essential part of capacity building for all involved in providing dementia care.”[33] While no clear and consistent approach is available, a group of physicians following a study concluded that strategies and support for DMC proved beneficial. They greatly valued the patient-centered care approach, practice process, and the worksheets as strategies. Appropriate tools benefited them by helping them understand the process and enhancing their confidence. These educational tools address the learning needs and help engage physicians in capacity enhancement. Thus, efficient training can ensure physicians strive in DMC and facilitate a uniform DMC method.[34]

CONCLUSION

DMC assesses a person’s ability to make informed decisions when information is given about their illness and treatment options. Four abilities help establish adult capacity: understanding, choice expression, appreciation, and reasoning. A clinician can assess if the patient has DMC using standardized tools such as ACE, HCAT, UTD, and MacCAT-T. These tools help identify if the patient can adequately understand disclosed information, make voluntary decisions, and be capable enough to make autonomous decisions. In case of incapacitated patients who cannot provide informed consent or dissent, clinicians turn elsewhere to alternate decision-makers for the patient, such as a surrogate decision-maker, or appoint themselves as primary decision-makers. For complex mental illnesses that necessitate additional expertise, the court may consider legal justifications based on expert testimony from highly trained medical practitioners, such as a psychiatrist or a neuropsychologist. In severe mental illness or psychiatric conditions such as dementia and delirium, the patient’s competency status and capacity assessment may be assisted by psychiatrists. In daily practice, however, not all members who conduct capacity assessments are available on duty for patients. Those who are always on hand include hospitalist providers who can and have always made decisions on behalf of the patient without the need for further assistance or referral to other physicians, such as psychiatrists who may not always be present to diagnose the patient as incapacitated.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.