Deep brain stimulation, emotions, and decision-making capacity

Deep brain stimulation, emotions, and decision-making capacity

(forthcoming American Journal of Bioethics - Neuroscience)

Müller and Christen (2010) state that for patients it is very difficult to weigh the potential of a decrease in cognition and change in personality as complications of an intervention, in particular deep brain stimulation (DBS). They argue that the evaluation of a patient’s capacity to make therapeutic decisions becomes especially difficult when the potential risks involve psychological impairment or cognitive loss. In the context of the informed consent process they recommend counseling which necessitates a balance of optimism with reality. They rightly point out that as DBS often is used as a last-resort procedure, expectations and desperation may create substantial challenges for free and informed consent.

Müller and Christen, however, remain relatively silent about the way in which decision-making capacity for DBS ought to be conceptualized and assessed. They only recommend that “the treating physicians have the duty to evaluate the patient’s ability to give informed consent carefully and to counsel their patients very responsibly.” And they take the view (without supportive arguments) that assessments of decision-making capacity should involve an interdisciplinary team including psychiatrists, psychologists and ethicist.

Since the seminal article by Roth, Meisel and Lidz (1977), the approach to decision-making capacity has focused on cognitive abilities: understanding, reasoning, appreciation and evidencing a choice. The traditional approach to decision-making capacity, as reflected in the well-known MacArthur Competence Treatment Study and the assessment instrument called MacCAT-T (the ‘gold standard’ of competence assessment in the literature) focuses narrowly on persons' cognitive abilities to the neglect of emotional factors.
Only quite recently, the role of emotions is given due attention in the literature and debate (Appelbaum 1998; Charland 1998; Berghmans, Dickenson & Ter Meulen 2004). This is striking as emotions should be considered as an important source of knowledge about the way of a person’s being in the world (Nussbaum 2001), the experience of being a patient, and his or her attitude and expectations in the medical context. Particularly when the stakes are high, as in case of DBS for treatment-refractory conditions, for patients and their families strong emotions will be involved. This is not so much because of potential cognitive and personality changes and psychological impairments which may accompany DBS-treatment (also psychopharmacological treatments may lead to such changes), but because of the seriousness of their condition, their treatment history and the expectations raised by this treatment option.

How do emotions enter the decision-making process of patients, particularly in patients who are desperate and may consider DBS as a(n) (treatment) option of last resort? Expectation, fear, desperation and hope in many treatment decisions are pivotal. This also may be the case in a research context, as there very frequently the therapeutic misconception may play a role (Appelbaum 2004). As Charland (1998) has argued, there is the hope or despair that one will get well; or there can be anger, fear, or joy that one will undergo a given procedure. In such cases emotions and their underlying valuations often function as reasons for action.
Emotions may affect these reasons for action and decision-making capacity in different ways. They may affect the perception one has regarding the goal of an intervention, and lead to an overestimation of potential benefits and an underestimation of potential burdens and risks. They also may involve trust and expectation which may contribute to placebo-effects (which is not necessarily undesirable in a treatment context). Feelings of commitment in the treatment process may result in a willingness to consider the details of different treatment options, while dedication and surrender may diminish participation of the patients in the decision-making process. Thus, emotions can both have the potential to promote well-considered decision-making and to reduce the validity of the consent of the patient. Particularly feelings of desperation and vulnerability create substantial challenges for the informed consent process and decision-making capacity in DBS (Bell, Mathieu & Racine, 2009).

From the traditional cognitive approach to decision-making capacity it has been argued that emotions are part of the concept of appreciation, as operationalized in the MacCAT-T (Appelbaum 1998). This claim, however, appears beside the point as this reduces emotions simply to cognitive abilities. To be able to appreciate his or her situation the patient should be able “to acknowledge his or her medical condition and the likely consequences of treatment options” (Appelbaum 2007). This implies that if the patient agrees with the medical diagnosis (that is to say in psychiatric terms: has illness awareness and possibly illness insight) and is able to reproduce information (i.e. is cognitively conscious of what treatment may bring), that then the appreciation-criterion is met. But is decision-making capacity necessarily reduced if the patient does not acknowledge the exact nature of his or her medical condition but is very committed to receiving treatment? Or is the patient decisionally competent if able to tell what the potential course of the illness after treatment will be but shows no real interest in it?

Therapeutic expectation, desperation, optimism, and false hope as well as therapeutic misconception may invalidate decision-making by reducing decision-making capacity. In order to compensate for this many commentators propose strategies to educate patients which are aimed at the cognitive content of disclosures (Braude & Kimmelman 2010). If such education is restricted to the cognitive content, empirical research, particularly in the domain of reducing the therapeutic misconception in medical research, shows that such attempts are deemed to fail (Glannon 2006). More, better and alternative ways of explanation do not significantly improve understanding in patients. In order to manage affective and emotional states to improve decision-making capacity in the context of research participation recently so-called affective consent interventions have been proposed (Braude & Kimmelman 2010). Such interventions are defined as deliberate actions undertaken by a study team or institution that are directed at managing therapeutic expectations of research subjects by producing changes in their affective states. Such interventions, however, are frought with ethical conundrums and deserve further exploration.

In conclusion: emotions should be considered as an integral part of decision-making capacity of patients who consent to DBS. They ought not to be neglected or sidelined, but to be taken serious as indications of the patient’s experience of being in the world and in the medical context. By taking emotions into account in the assessment of decision-making capacity, the intertwined role of cognition and emotion is recognized. Present instruments used to assess decision-making capacity like the MacCAT-T are not suited to qualify or quantify the impact of emotions on decision-making capacity. How researchers and institutions ought to deal with emotions in medical decision-making in both clinical and research contexts raises ethical issues which are in need of further debate.


References

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