Competence in health care: an abilities-based versus a pathology-based approach

The abilities-based approach

Four specific abilities are often considered as requirements for decision-making capacity: the ability to express a choice; the ability to understand the relevant information; the ability to appreciate one's situation and the consequences of the options; and the ability to reason about treatment choices. ^1,13,14 This model was put forward by Appelbaum and Grisso ¹⁵ in 1988 based on their analysis of US legal cases looking at the various criteria that the courts referred to. A clear advantage of such an approach was that it was not at odds with US legal practice, because decisions on competence would always have a firm legal component. ^A Formulating these abilities and especially developing an assessment tool based on these abilities (the MacCAT-T) has been influential in both clinical practice and research. ^5,7 The four abilities in fact describe the conceptual building blocks of (competent) decision making. They, however, do not provide a specific criterion or threshold for (in)competence in an individual patient. As Appelbaum points out: ‘… the presumption intrinsic to a modern democracy is that the vast majority of persons are capable of making their own decisions. Hence, only patients with impairment that places them at the very bottom of the performance curve should be considered to be incompetent’. ¹ The criteria are meant to guide an assessment, enhancing its reliability and validity, rather than providing an exact criterion for (in)competence.

There has been some discussion about whether or not the four abilities approach is capable of accommodating emotions as crucial factors in decision-making capacity. ¹⁷ Charland ¹⁸ notably has argued that the focus is on cognitive abilities and that emotions are absent from the MacCAT and that, therefore, the assessment tool is deficient in a relevant way. In response Appelbaum ¹⁹ acknowledged that the four abilities focus on cognitive functioning, yet pointed to the fact that the cognitive focus ‘undoubtedly reflects the experience of the courts with regard to the major causes of decision-making incapacity’. At the same time, on Appelbaum's ¹⁹ account, what Charland argues for – via his emphasis on emotions – comes down to ‘not truly’ being a ‘focus on the contribution of emotions to decision making, but rather centres on the addition of a new cognitive element – i.e. appraisal – that is closely related to an existing component of competence – i.e. appreciation’. In other words, emotions by influence competence by influencing the appreciation of the situation. If one agrees with Appelbaum, then this aspect of appreciation has already been identified as a criterion in the abilities approach. The aspect of appreciation can cover emotional as well as cognitive problems.

The pathology-based approach

Instead of this primarily law-driven approach, another approach can be found in the literature on competence. This approach has been informed by empirical ethics research in people diagnosed with certain psychopathological conditions (see below for an example). So, instead of legal cases or considerations being the starting point, it is the experience of patients and care-givers in cases of specific mental disorders that provide the first point of orientation. In fact, such an approach is an example of empirical ethics in that it takes empirical data as the starting point of normative analysis. ²⁰ So, the research is not just performed to establish, for instance, the percentage of people suffering from anorexia who, according to the MacCAT, have to be considered incompetent. In such an empirical study, the normative framework (on competence) would already be fixed. An empirical ethics methodology implies that the normative framework is fundamentally informed by and if necessary reset based on the empirical research. ^B

Tan et al. ¹² provide an example of such research on competence. In their study 10 female patients (aged 13–21 years) diagnosed with anorexia nervosa, as well as eight sets of parents, were interviewed using semistructured interviews. Through these interviews, Tan et al. aimed to ‘identify aspects of thinking that might be relevant to the issue of competence to refuse treatment’. This is what makes the Tan et al. study special and, indeed, an alternative to much of the research that has been done in the area of informed consent. Tan et al. observed that a ‘striking theme that emerged was of values changing when patients developed anorexia nervosa, in ways that are relevant to the issue of competence to either consent to or refuse treatment’. ¹² So by influencing a person's values (being slim is more important than being happy) anorexia nervosa – a pathological condition – can significantly influence a patient's decision making about treatment options. The ‘paramount importance of being thin’ overrides other values, decisively influencing the choice of treatment options. ¹² Importantly, these patients ‘performed very well on the MacCAT-T’. So, anorexia nervosa apparently affects decision-making capacity in a specific way, not traceable in ability-oriented instruments. Based on these findings, Tan et al. ¹² emphasize the importance of certain values in the assessment. More precisely, they point to the fact that values used in the treatment decision should not be ‘pathological’. There are three important issues in the study of Tan et al. First, the study is both empirical and normative; second, it takes a certain type of psychopathology as a starting point; and third, the problems occurring in patients are defined in terms of pathological values. ^C

In the Mental Capacity Act (United Kingdom 2005), lack of competence requires, as Nicholson et al. ²¹ explain, ‘impairment of or disturbance in the functioning of the brain or mind’, i.e. ‘cognitive impairment, mental disorder, delirium or intoxication’. This impairment of functioning is the ‘threshold’ requirement. If there is no impairment in these domains, a patient must be considered competent. If there is, however, impairment, the four criteria have to be taken into account in the assessment. Yet, the usefulness of paying attention to psychopathology in the way performed by Tan et al. ¹² exceeds its mere functioning as a ‘threshold’. It is more of a heuristic principle in research and a way of contextualization in actual assessments.

However, it should be emphasized that people suffering from a mental disorder are not for that reason alone incompetent with respect to decisions about their treatment. As Appelbaum says, ‘no diagnosis in which consciousness is retained is invariably predictive of incapacity’. ¹

Non-medical terms versus contextual aspects

A strength of the abilities-based approach is that it can be phrased and understood without entering the medical domain. This approach is in that sense transparent: there are clear criteria accessible to everyone that are directly related to the act of decision making. In contrast, linking competence to psychopathology might make decisions on incompetence less transparent and may lead to a form of unhelpful medicalization of the concept of competence. In fact, medical criteria would be used in a setting where the patient might need protection from (paternalistic) health-care professionals. Therefore, relying on ‘pathological values’ as a way to approach competence, as Tan et al. ¹² do, runs the risk of medicalizing competence assessments, granting greater power to clinicians and risking a default assumption that mental illness is somehow synonymous with incompetence – which is not what Tan et al. propose.

In addition, it might be argued that conditions like fatigue, stress and intense emotion may influence decisional processes, ³ so incompetence is not exclusively related to psychopathology or medical diagnosis. These arguments would support an abilities-based approach.

Furthermore, the meaning of ‘pathological’ in the context of pathological values is not self-evident. Tan et al. ¹² introduce the notion as follows:

An attractive way forward, which has intuitive appeal, is to see those values that are both a result of mental disorder and that underpin the dangerous decisions (such as refusal of beneficial treatment), as pathological. One implication of their being pathological is that these values do not represent the true or authentic views of the person. In respecting the autonomy of the person it is her ‘authentic’ views that should be respected – that is the views that she would have (or did have) if she did not suffer from the mental disorder. The concept of pathological values, linked to mental disorder, enables such values to be distinguished from the unreasonable, unusual or bizarre values that people are fully entitled to hold, and often do hold, in the course of everyday life.

So, in their conception of ‘pathological’, the concept of authenticity is central. Within the context of anorexia, the authenticity of the values has to be taken into account. Notably, this is not a medical concept in itself. ^D

Also for Tan et al. ¹² the values per se do not seem to be pathological; it is rather their strength that makes them pathological: ‘What is striking in anorexia nervosa is the strength of these values, and the central importance attached to them, often to the severe detriment of other value systems and other aspects of life’. In other words, while for many being slim is relevant to overall wellbeing, in anorexia the value of being slim is overwhelming. The term ‘pathological values’ could obscure that it is not about the values per se, but rather about their strength and their tendency to completely obliterate other values.

Tan et al. refer to ‘an intuitive appeal’ for considering these values as ‘pathological’. In our view this intuitive appeal is important but this does not mean that no further explication or justification would be needed. Further research must address the question of how to adjudicate between healthy and ‘pathological’ values.

Furthermore, the mere fact that an illness changes a patient's decision-making process does not necessarily mean that it influences her capacity to make a decision in a negative way. A person's values are not fixed and the experience of having a disease, for instance, may lead to a change in view about what is important in life. So, a change due to experiencing a disease is in itself neither sufficient to consider the values pathological nor sufficient to consider a patient incompetent with respect to decisions about treatment. It should also be pointed out that not everyone diagnosed with anorexia is incompetent to make decisions. In other words, in each case a specific assessment has to be made concerning the extent to which the patient's values may have been affected and the extent to which they may affect decision-making capacity.

Finally, we should take into account the lack of clarity about how to define mental disorder. ^22–24 Views on specific mental disorders are neither static nor completely clear, but the fact that they are in flux does not render them irrelevant. In fact, the idea that competence can be defined and assessed in a straightforward way without reference to context or history is itself problematic. Competence depends on the situation and on historically changing views on and conditions of decision making. ²⁵ As chronic illnesses become more important, the patient's experience becomes more relevant to the process of decision making, opening new venues for giving the patient a voice, but also implying new demands on its quality. Changes in the age at which younger patients are allowed to take part in making decisions also can serve as an example here. Contextualizing competence assessments will mean that issues which are in flux will have to be taken into account.

Rationality versus authenticity

In general, the emphasis on the abilities-based approach in the decision-making process is valuable, but the risk is that it overlooks a key ingredient, that is the decision-maker's values. The Appelbaum–Grisso criteria might well establish criteria of rational decision making, but they might be less suitable for the evaluation of the authenticity of decision making. It is – at least conceptually – possible that a person suffering from a serious mental disturbance can indeed appreciate the situation, reason about options, understand the information, and express the choice, even though the decision is not what should be considered authentically his or hers due to a periodically occurring disturbance. Questions about the authenticity of a choice have, for instance, emerged in debates on neuromodulation and competence. ²⁶ Spike, ²⁷ in response to Appelbaum's claim that the decision being ‘reasonable’ is a criterion for competence, ¹ argues, however, that decision-making capacity ‘has more to do with acting characteristically than with acting reasonably’. However, Appelbaum challenges the application of a consistency standard rather than reasoning: ‘Consistency with past behaviour is a difficult determination, especially for unprecedented decisions (e.g. amputation); moreover, a consistency standard risks denying patients the right to choose differently today than they have in the past’. ²⁸ Consistency with past decisions is indeed not an ideal criterion as people should be free to choose differently. Yet this freedom becomes problematic when the change is due to a mental disorder. In this situation, while the rational decision-making process is working fine, it somehow seems to work alienated from the person proper. Although the decision-making process is not at odds with rational decision making, it is at odds with this person's self as it was in the past, before the onset of illness, and still may be between episodes of illness.

In a relevant way, authenticity is addressed in the work of Tan et al. ¹² They show that somehow the values of the patients were no longer their authentic values. In anorexia, people are able to reason, but due to the mental disorder something has fundamentally changed. This change is not considered by Appelbaum–Grisso. However, change per se should not be a problem (see Appelbaum's response); people may change their minds. But when such a change is pathology-related, things may become very different. Much more could be said about the concept of authenticity and the various conceptions thereof, ²⁹ but within the context of the study by Tan et al. ¹² it appears that authentic values could be considered to be those fundamental values present before the disorder (anorexia, in this case) manifested itself.

Neutrality versus care for crucial interests

According to the Appelbaum–Grisso approach, competence is dependent upon cognitive abilities. A person's competence is similar to other abilities, like being able to walk or to play tennis. A person who is unable to walk should not be left on the street on his own; a person who is unable to play tennis should not take part in a game or enter a contest. Likewise, a person who lacks cognitive abilities should not make decisions about medical treatment or participation in research. This view on abilities has the advantage of making judgements of competence neutral and objective. Yet it might be objected that decisions on treatment and health are different from the decision on whether or not to play tennis. In a sense the former decisions are much more crucial. The studies of Tan et al. ¹² show that physicians are not neutral towards the decisions of patients with anorexia nervosa. They care about the patients and feel that something should be done to help them. From an abilities-based approach, this is subjective and even paternalistic. Yet, one may argue that concern about another person's critical interests is the core of the physician–patient relationship.

In addition, incompetence is a condition which, unlike the absence of the skill to play tennis, should be ended as soon as possible. We are absolutely not indifferent from a person's incompetence. We feel people should be competent and that health-care workers should do whatever they can to restore competence in incompetent people. The link with mental disorder not only stresses that incompetence is a serious health-care issue, but also that health-care workers should try to end a situation of incompetence as soon as possible.

There is a further point with respect to the relationship between decision-making capacity and a pathology-based approach. It is uncontroversial that adults are presumed competent to make decisions about medical treatment. ^3,6 As Nicholson et al. state: ‘Capacity should always be assumed. A patient's diagnosis, behaviour, or appearance should not lead you to presume capacity is absent’. ²¹ In other words, there is a default condition of competence. From this presumption of competence, it could be argued that in assessments of competence we should assess whether there are disturbances of this default condition. Given the presumption of competence, the first question may not be: what are the building blocks of presumed competence? Rather, the first question could be: what are the conditions in which the presumption can no longer be held? As long as decision making is not influenced by some mental disturbance, the presumption of competence will hold. In contrast, when competence is not presumed, health-care workers would have to assess every patient's competence positively; then, it could be argued that the primary concern would indeed be to find the criteria or building blocks of competence.

From this point of view, relying on the presumption of competence, assessments of competence could be considered to be basically about finding evidence for incompetence. Without clear evidence of a disturbed decision-making process, the patient has to be considered competent. Along this line, it would be possible to conceive of assessments of competence other than evidencing the presence of the abilities or skills needed for competent decision making. It would, then, rather be about evidencing disturbances in the decision-making process. Decisive influence of a mental disorder on the actual process is such a disturbance.

Training abilities versus supporting recovery

At first sight, the abilities-based approach seems to provide the most direct route for recovery. Indeed, one could argue that if abilities or skills are not present, these could be trained and then a person could, again, be competent to make the relevant decision. In contrast, the pathology-based approach might lead to the attitude: ‘This person has pathological values, we don't need to talk to him or her’. However the pathology-based approach can also allow for the possibility of recovery because the direct link with mental disorder could help to identify supportive measures. ⁶ A practical example is the case of delirium. Because we know that delirium is a condition that naturally waxes and wanes, an assessor could return the next morning to make a second assessment and, if possible, let the patient make a competent decision about his or her treatment. ³⁰ Without taking into account specific knowledge about this disorder, such an opportunity might be missed. A more clear-cut example of a supportive measure would be treating the delirium, e.g. via medication. After treatment, the patient's competence can be assessed. Yet we have to note that the current dominance of the abilities-based approach makes it difficult to treat patients who refuse treatment in such a way that they can make their own choices on treatment at a later date. A challenge clearly lies here.

Recently, neuroscientists and cognitive researchers have started to look closely at the specific influence certain mental disorders can have on decisional processes. ^31,32 This kind of research should lead to specifying the particular challenges persons suffering from various mental disorders face with respect to competent decision making. ³³ If we study several disorders like addiction, obsessive-compulsive disorder and body dysmorphic disorder, patients may turn out to face different challenges with respect to decision making in each of the patient groups. Such pathology-driven research could inform ethical theorizing on competence.