The determination of decision-making incapacity is time, task, and situation specific, and can be quite complex.  This complexity is in part caused by a lack of reliability and standardization when it comes to determining capacity.  In turn, this lack of reliability and standardization is caused by, among other things: biased or unattainable corroborative information, potential outcomes, risks, social conflicts, and impacts on family or supportive friends. All of these factors culminate in a subjective threshold applied by the capacity evaluator. Notably, incapacity cannot be determined by diagnosis or cognitive rating scale. Fundamentally, capacity evaluations consider the ability of the person whose capacity is being assessed (the “Decision Maker”) to understand the relevant applicable information, appreciate the potential consequences, and communicate the reasons for a decision.

A common misconception about decision-making capacity evaluation is that it is regarded as a cognitive test, essentially a test of intellectual capacity to make a rational decision.  Rather, capacity evaluation is a holistic test – a combination of biological, psychological, social, legal, and financial factors that may come together depending on the specific decision-making task and situation at hand. Assessments based on a purely cognitive approach to capacity evaluation are limited and place excessive emphasis on the individual’s ability to understand, but inadequately evaluate the Decision Maker’s ability to appreciate.

A recent systemic review of testamentary capacity evaluation concluded that a capacity evaluator’s own personal judgment taking into account the medical, legal, and ethical issues informing a decision remains the gold standard for assessing testamentary capacity.[i] Unfortunately, in my experience, this “clinical” approach to capacity evaluation leads to disputed opinions and unreliable assessments. The same concern applies to determining capacity to consent to treatment (e.g., medical assistance in dying (‘MAiD’)) and to apply for long-term care placement.

Another recent systemic review on the topic of testamentary capacity authored by both medical and legal Canadian experts determined similar concerns about the reliability of contemporaneous (and subjective) testamentary capacity evaluations.[ii] The authors recommended:

1. Development of a predictive model based on the most relevant variables in these cases;
2. An overall standardization of capacity assessments and improved medico-legal collaboration; and
3. More reliable standardized contemporaneous assessments and validated protocols noting that situation-specific factors must be incorporated.

Incapacity is often not recognized because there are no screening instruments to detect or monitor risk of incapacity or vulnerability to undue influence. In order to create a validated screening tool for incapacity, one must overcome challenging obstacles.  For example, one challenge relates to the reliability of the Decision Maker’s answers to questions during the capacity assessment.  Such answers may be unreliable because incapable persons typically cannot recognize their own incapacity.  Another challenge concerns the reliability of corroborative information from an informant, which may be biased by a desired evaluative outcome.

A universally applicable incapacity screening and monitoring tool to detect a vulnerable person’s risk for incapacity or undue influence is required in order to determine if reasonable grounds exist to pursue formal capacity evaluation. The Capacity Clinic sought to create such a tool (one that would not require any clinical training) in order to assist legal professionals, financial advisors, healthcare providers and even family and supportive friends, so they could screen and monitor an individual’s risk of incapacity or vulnerability to undue influence.

Our defining concept to screen generally for incapacity and/or vulnerability to undue influence for any legal, financial, or health decision-making task is as follows: if a person cannot understand information about themselves, then they are less likely to be able to apply that information to their own situation, thereby impacting their ability to appreciate the consequences of decisions.

We found that a Decision Maker’s ability to understand can be determined by having both the Decision Maker and the informant (i.e., someone who provides corroborative information about the Decision Maker) answer a holistic set of 39 questions.  These 39 questions fall into  7 categories relating to biological, psychological, social, legal, and financial decision-making vulnerabilities.  The answers to both sets of questions are then compared against each other, with any discrepancies noted.  To reduce potential bias, this comparison is done without regard to the specific decision-making task that is being evaluated.  This screening tool is preferably done by both the Decision Maker and an informant (or informants).  However, the screening tool does not require an informant’s input, as many of the Decision Maker’s answers can also be assessed for accuracy by reviewing the Decision Maker’s medical record.

If the need for a more formal capacity evaluation is detected, our evaluation software provides a standardized approach for capacity evaluation by a legal or healthcare professional for any decision-making task within the legal-financial-health spectrum.  This is done by providing a series of optional questions that the evaluator can use in a semi-structured interview to assist in determining whether the Decision Maker is able to satisfy each individual criterion of the specific decision-making test being evaluated for in every jurisdiction in Canada (Quebec pending).

Testing the screener and software for capacity evaluation in pilot cases has proven satisfactory to us and our next objective is to pursue the research in contemporaneous capacity evaluation cases to validate the screening tool and evaluation software, using artificial intelligence and factor analysis of patterns of responses to validate the screening tool’s ability to provide predicted probabilities for risk of incapacity and/or vulnerability to undue influence.

We are seeking co-investigators to participate in our capacity screening and evaluation research and any interested legal or healthcare professional is encouraged to contact the Capacity Clinic or myself directly.

References

[i] Aravind, H., Taylor, M., & Gill, N. (2024). Evaluation of testamentary capacity: A systematic review. International Journal of Law and Psychiatry, 93, 101969.

[ii] Jakubek, A., Montag, T., Hull, I. M., & Shulman, K. (2024). The medico-legal approach to the assessment of testamentary capacity: a systematic review. The American Journal of Geriatric Psychiatry.