The rejection of capacity assessments in favor of respect for will and preferences: the radical promise of the UN Convention on the Rights of Persons with Disabilities

G. Szmukler1 argues for an interpretation of “will and preferences” that allows for determinations of decision-making ability, in the form of functional assessments of mental capacity, to be used to interpret the decisions of those who appear to display conflicting will and preferences.

In this commentary, I will focus on three core issues which arise from Szmukler's approach: the issue of indirect discrimination in functional assessments of mental capacity, the dilemma of advance decisions, and the need for a human rights compliant response in a situation where the individual's preference(s) appears to conflict with his/her will.

Concerning the first issue, Szmukler argues that the application of functional assessments of decision-making ability should not be regarded as unlawful discrimination, because these serve a legitimate aim, the assessments are objective in nature, and meet the criteria of reasonableness and proportionality in pursuit of their legitimate aim.

Even if the notion of a legitimate aim – protecting the totality of the person's human rights – is accepted, it is far less certain whether functional assessments of capacity can be considered objective in nature, or a reasonable and proportionate response to resolving a perceived conflict of rights. Szmukler cites Grisso and Appelbaum's review of measures used to assess competence2 in support of the argument for objectivity, but this is by no means an uncontested position in the literature.

For example, Morgan and Veitch3 criticize the purported objectivity of mental capacity assessments. They argue that “the real point of legal tests for mental capacity seems not to be to assess some projected future or, indeed, past ability to make a choice… but to assess whether the person making that decision can construct a convincing case why he or she reaches the standard of the ‘ability’ that law expects in such circumstances” .

In support of this argument, Haidt4 and Iyengar and Lepper5 showed that individuals only conjure up reasons for their decisions when called upon to do so, and these reasons rarely correlate with their actual decision-making process at the time of the original decision, but rather reflect the most persuasive explanation the person can find for his/her decision.

These studies suggest that the process of assessing an individual's mental capacity, even on a functional basis, is an inherently subjective and value-laden one. Therefore, the use of such assessments to restrict or deny legal capacity violates the requirement of objectivity demanded by human rights norms in order to avoid the categorization of disability-based discrimination.

It is also clear that the use of functional assessments of mental capacity to reconcile perceived conflicts of rights, will and preferences does not meet the criteria of reasonableness and proportionality. With increasing evidence of the effectiveness of alternatives to substitute decision-making6, a reliance on mental capacity assessments as a trigger for (potentially coercive) interventions seems less and less reasonable. As long as alternative, less intrusive measures exist which could be used to reconcile perceived conflicting will and preferences, it cannot be proportionate to impose substitute decision-making based on an external decision-maker's functional assessment of an individual's mental capacity to make a particular decision.

The second issue I wish to address relates to advance directives. Such directives – which are listed in the Committee on the Rights of Persons with Disabilities’ General Comment No. 17 as an important example of support to exercise legal capacity – can easily be reframed away from the capacity/incapacity paradigm, to give the directive-maker much greater flexibility to determine when the directive becomes operational. In other words, the perceived absence of functional mental capacity should not be the automatic legal trigger for a directive entering into force. Instead, the directive-maker should specify the circumstances in which he/she wishes his/her directive to take effect.

A directive-maker could, for example, specify that the directive should be activated once he/she starts exhibiting certain behaviors, or when he/she is admitted to hospital, or when a number of trusted supporters named in the directive all agree that he/she is now in crisis or unable to communicate. This ensures that the power remains with the directive-maker to set the conditions under which the directive will take legal effect.

As for the thorny question of Ulysses clauses, in my view it should be possible for individuals to include these in directives if they so choose. In practice, I anticipate that the use of such clauses would be very rare, as most people will not want to bind their future selves to a situation that they would not then be able to reverse. But, as this is an important support option which some individuals wish to have, it should be available to persons with disabilities on an equal basis with others.

The final issue I wish to address is how a human rights compliant response can be developed where we perceive an individual's will and preferences to be in conflict and incapable of reconciliation. As I have previously argued8, where will and preferences conflict, a number of strategies can be employed. First of all, what an outsider might perceive as a conflict between will and preferences may not be perceived by the individual decision-maker as problematic – it might reflect a change of approach from past decisions based on experience, a new perspective, or simply the fact that the person has changed his/her mind.

A human rights compliant approach to resolving these perceived conflicts involves engaging in all forms of communication with the person, and speaking with those the person indicates are trusted supporters to inform the interpretation of his/her will and preferences in this specific situation. It may happen during this process that the will and preferences of the person become clear. If the will and preferences of the person remain unclear following all efforts, and a decision still needs to be made, the interpreter will have to make a decision informed by the “best interpretation” of the person's will and preferences he/she arrives at, given all the information available about the person's wishes.

Others have suggested that a “best interpretation” means “the interpretation of an adult's behaviour and/or communication that seems most reasonably justified in the circumstances” , and that “decision-making supporters must be able to provide a reasonable account of how this interpretation was arrived at”9.

The process of arriving at a “best interpretation” of will and preferences is inevitably challenging and fraught with uncertainty, but, if the new paradigm heralded by the Convention on the Rights of Persons with Disability (CRPD) is to mean anything, it must be understood that this process is radically different from how determinations of decision-making ability have been undertaken in the past.

Therefore, contrary to what Szmukler proposes, it is my contention – in keeping with the jurisprudence of the CRPD Committee – that functional assessments of mental capacity cannot be used to determine whether a particular preference should take precedence over what others perceive to be the individual's will, or whether third parties’ interpretation of a person's will can justify ignoring the individual's clearly expressed preference.