Questioning Assumptions About Vulnerability in Psychiatric Patients

In their target article, Lawrence and colleagues (2019) demonstrate a wealth of insight into the thought processes surrounding decisions to participate in deep brain stimulation (DBS) research trials for patients with treatment-resistant depression. They document the substantial concerns and reservations held by these patients, as well as the reasons for caution in approaching vulnerable patients who are at risk of suicide. However, we feel that these results also demonstrate reasons to feel less discomfort with recruiting these vulnerable patients into research. Equipoise is required for clinical trials, in that there must be a state of uncertainty regarding the therapeutic benefit of the treatment for a particular patient group. However, as certain authors have rightly pointed out (Allmark and Mason 2006), the concept of equipoise is somewhat undermined by the fact that, to be conducted as a trial for human study, the treatment in question must have shown promise in early-phase or case-study research in order to be considered for a clinical trial. This concept is also squarely rooted in the perception of the researchers; the perspective of the patient, however, does not require equipoise. Patients may very well be hoping to be placed in the treatment arm, since, in our experience, their general perspective seems to be that if a trial is being conducted, that treatment must show promise. This perspective, if substantial enough, amounts to therapeutic misconception and is good reason to balk at recruiting a patient for a clinical trial. Patients with treatment-resistant depression, however, do not generally tend to be a worryingly hopeful group. However, some authors (Coulter 2013) have suggested that the existence of a mental illness in a potential participant necessarily entails that they are vulnerable. We feel Lawrence and colleagues’ (2019) results somewhat undermine this notion, as they document the thoughtful and skeptical approach the patients took to approaching the decision of participating in an invasive and novel option for potentially treating their depression. In support of this idea, it has been noted that in certain circumstances, a “depressive realism” exists where depressed individuals may perform more accurate appraisals than nondepressed individuals (Moore and Fresco 2012). This by no means suggests that depressed patients may more accurately weight the pros and cons of research participation than nondepressed individuals; it merely supports the notion that the consent of patients desperate for relief from depressive symptoms is not necessarily coercive (Christopher et al. 2011). Further, treatment-resistant patients have had the experience of repeated interactions with the health care system and health care professionals, and with the promise and peril of the “trial and error” approach to psychotropic medications that must, at times, be undertaken. They are arguably more acutely aware than many other patient groups of the mismatch between their own hope for therapeutic benefit and the chances of receiving that benefit. Arguments describing an inherent vulnerability of psychiatric patients have appropriately pointed out that certain psychiatric symptoms clearly compromise decision making (American Psychiatric Association, 2013), and decisions made during an acute disease state may not align with the wishes of the person when they are feeling well. Lawrence and colleague's (2019) patients rightly noted this concern themselves, and many did not want these wishes to be honored. There are indeed certain disease states or symptoms that may very clearly indicate someone should not be considered capable with regard to consent, such as an anorexic patient from whom consent to feed is being requested. However, it is generally agreed that autonomy is best conceptualized as being domain specific, where the inability to make one treatment decision does not necessarily indicate lack of capacity to make other treatment decisions (Mackenzie and Stolijar 2000). Psychiatric patients who are acutely suicidal are appropriately held for psychiatric evaluation but still retain the ability to make certain decisions regarding their care. M€ uller (2000) documents several cases in which an underlying brain disease was the clear root cause of psychiatric symptoms. These symptoms represented a departure from who the person was before the disease course began, so we can reasonably see that acting against the expressed wishes of the patient to treat them can be restoring their autonomy. We are confident in saying that but for the disease, they would want to be restored to their previous state.