Ethically, it is every person’s right to make their own decisions. Embedded in this right, is the freedom to make healthcare-related decisions. The imposition of limits is a complicated issue, particularly in healthcare, where the practitioner must demonstrate whether or not the patient has the adequate capacity to make the decision in question (i.e. consent to treatment or research participation)13.
The findings of this study revealed that less than half of the geriatricians were able to correctly identify the statements that reflect the principle of autonomy. Among those who failed to do so, the majority didn’t recognize that in case of no-emergency and when the patient’s decision-making incapacity was confirmed, decision-making is done by a surrogate defined by a “person of trust” that reflect patient’s own wishes. This was similar to a study conducted by Tarabey et al. (2018)14, where psychiatrists had a poor understanding of the concept of autonomy.
All geriatricians in this study agreed on the need for IC among patients with AD in both research or clinical settings. However, no one was able to denote all the necessary criteria required by the IC’s process. This fact was supported by the findings of a Lebanese national survey conducted by Abou-Mrad (2008)15 who highlighted the absence of the informed consent process in around 83% of Lebanese hospitals. It is noteworthy that only one participant knew that disclosing adequate information to patients, is directly linked to the process of IC. Appelbaum (2007)16 has stated that physicians must prove good communication skills in ways that patients understand, and not just tell patients about a proposed procedure or therapy and its risks and benefits. Furthermore, not all of the geriatricians (66.7%) were knowledgeable of the fact that legislation exists in Lebanon regarding the process of IC (Law 574/2004, patients’ rights, an informed consent)17. Moreover, more than half of the geriatricians (66.67%) failed to recognize that “a confirmation of a patient’s competency to make a decision”, is required by the process to IC. Yet, all but one of the geriatricians assessed the DMC of their patients with AD. This reveals a severe mismatch between common knowledge and common practice.
Assessing for DMC is used to determine the extent of an individual’s ability to make a decision18. Therefore, making a judgment based on only one assessment method (i.e. MMSE) would be erroneous18. However, the study’s findings showed that all of the geriatricians relied on only one method to assess the DMC, either a tool or their clinical experience. For instance, some had chosen the MMSE and had selected different cut-offs (score above 20; 24 and 25) to judge that their patients possess an adequate DMC. Appelbaum (2007)16 stated that when scores of less than 19 were presented, the MMSE has been found to correlate with clinical judgments of incapacity. However, studies vary in suggesting that scores of 23 to 26 or higher are strongly indicative of competence16.
Regarding the final judgment of the DMC, geriatricians were unable to make a clear judgment when they used either of MacCAT-CR/MacCAT-T, UBACC, or their clinical experience solely. This is justified by the fact that the MacCAT tool does not establish a cut-off score for capacity, and the validity of the final judgment will depend on other clinical variables combined with the clinician judgment16. Moreover, the UBACC seems interesting for routine practice due to its simplicity, relevance, and applicability in older patients18. Moreover, it is potentially useful for screening purposes and might identify the need for a more comprehensive decisional capacity assessment, rather than come up with a final determination of capacity6. Similarly, the sole use of clinical expertise to make a judgment of the patients’ DMC was shown to be imprecise 18.
Algorithm for the decision-making capacity assessment process
The findings of this study set a motivation to propose a set of recommendations to improve and standardize the assessment of DMC. The decision of an impaired DMC should rely on the severity of the cognitive impairment, context, decision that needs to be taken, and risk-benefit ratio of the various options10. Accordingly, in practice, this involves subjecting patients who are facing more serious procedures and therapies, to a more rigorous process of DMC testing (Table 4).
Strict guidelines may promote the principle of justice through ensuring consistency, meaning, they allow treating similar cases in the same way by implementing a process that results in a reliable assessment of DMC9. Yet, these guidelines can impede the clinician’s ability to tailor adequate care based on the patient’s personal circumstances, values, and medical history9. Adopting policies that are too flexible, that rely solely on the clinician experience and personal judgment, tend to compromise on reliability and with it the ethics of justice9.
Regarding cognitive testing, the Montreal Cognitive Assessment (MoCA) tool outmatched the MMSE due to its high sensitivity in the early detection of dementia, mild cognitive impairment, and AD20,21. MoCA evaluates different types of cognitive abilities20,21. Furthermore, when a cut-off score (23) was used, both sensitivity and specificity were excellent (0.96 and 0.95, respectively)22. Substantive criticism takes place when the assessment of DMC relies exclusively on the patients’ cognitive processes while discarding their emotions since emotions often provide a valid reason for action23. Furthermore, strategies to alleviate a patient’s fear and anxiety should be considered, since it might interfere with his/her ability to attend to and process information. Therefore, introducing a known and trusted confidant or adviser to the DMC process, may help the patient in making an educated decision16.
It is noteworthy that the “Understanding” capacity is affected the earliest, followed by reasoning and appreciation while making a “choice” is preserved the longest18. The simplified three-item questionnaire (cut-off of 2.5), showed a sensitivity of 100% and specificity of 77.3% when compared to MacCAT-CR on the testing of “Understanding subscale”. This finding suggests that this tool might allow healthcare professionals to screen for those with an understanding deficit, which will save time and requires less training than the MacCAT tool18,24.
When feasible, it is suggested that patients are assessed several times before labeling them as lacking DMC13. However, if despite such efforts, the patient’s incapacity to make a decision persists, a proxy must be sought16. In emergency situations, physicians can take a decision on behalf of the patient, under the presumption that a reasonable person would have consented to such treatment16.
It is the clinician’s duty to ensure that contextual and personal factors are taken into consideration, to enable the patients to make the appropriate decisions. This includes: spending time educating patients, and their families; ensuring that patients adequately understand the disclosed information; alleviating patients’ anxiety; and taking into account lucid intervals, financial coverage11, and any disease that may interfere with DMC.
Clinical experience combined with neuropsychological testing (including the executive function), and a capacity testing tool, in a particular context, and weighed against the benefit to the risk ratio, should be considered to optimise the DMC assessment process. If despite such efforts, the patient’s decisional incapacity persists, a proxy must be sought. Finally, in emergency situations, physicians can provide the appropriate decision that would warrant the patient’s best interest.