In my previous post, I described how recent studies have suggested that Deep Brain Stimulation (DBS) could be used to ameliorate the condition of patients suffering from treatment-refractory anorexia nervosa (AN). In this post, I shall consider two barriers that clinicians might face to obtaining valid informed consent to this procedure. This is an important question to consider, since the current consensus is that DBS should only be carried out with the valid informed consent of the patient, given the risky nature of the procedure, and its experimental nature in the context of anorexia nervosa.
There have been a number of philosophical discussions of whether some anorexic patients are competent to refuse potentially life-saving treatment. Those who argue that such patients can often lack competence claim that AN imposes pathological values (Tan et al. 2007). Alternatively, it might be claimed that some sufferers do not adequately appreciate that they are suffering from a mental disorder, or that the disorder may diminish cognitive capacities that are central to understanding.
These are complex questions that I shall not address here. For the purposes of my discussion, I shall assume that the patients under consideration are competent to make their own treatment decisions, and that they could thus competently consent to undergoing DBS. That said, we should note that on some plausible views of competence, the provision of valid consent to undergoing DBS may require a particularly high standard of competence, given the high risks associated with neurosurgery (overall complication rates of DBS can exceed 25% (Grill 2005), and the complexity of the information pertaining to the nature of the procedure and its effects.
However, even if we assume that patient’s are competent to provide valid consent to the procedure, there are two important problems that clinicians may face to obtaining valid consent if the use of DBS in AN moves beyond the experimental stage to widespread clinical use. Safeguards would need to be put in place to avoid these problems.
Perceived Coercion
In the UK, some severely anorexic patients who refuse treatment have been sectioned under the Mental Health Act, and subjected to involuntary force-feeding, a highly invasive and distressing procedure. Given the risky nature of DBS, it is highly unlikely that DBS would ever be imposed on a patient in this way. Rather, even if the use of DBS in the treatment of AN became widespread, it is most likely that it would only be offered to patients after all other treatment options have been exhausted.
However, we might be concerned that the offer of this treatment might be perceived as being coercive. Suppose that a severely anorexic patient who had refused other forms of treatment believed that there was a risk that they might soon be subjected to force-feeding. They might then plausibly consent to undergoing DBS as a last resort treatment because they strongly want to avoid force-feeding.
How much should this matter? Anorexic patients often report perceived coercion in their treatment programmes (Tan et 2010). However, even if we are prepared to permit placing a limited form of coercive pressure on patients to ensure that they enter into existing non-invasive treatment programmes , it is not clear that we should also permit placing coercive pressure on patients to undergo a risky and deeply invasive procedure such as DBS.
It might be argued that patients would not feel coerced into undergoing DBS if they were given the choice to consume food voluntarily. However, it is not clear that this is sufficient to dispel the concern that I am outlining here. Both the natural consumption of food and force-feeding directly frustrate the desire of severely anorexic patients to forgo food. They might thus believe that DBS is preferable to either of these options, because it would not directly frustrate their desire to forgo food. They might even believe (incorrectly) that they could ‘fight’ mentally against the effects of DBS in the same way that some patients report fighting against CBT (Tan et al. 2010).
What safeguards should be put in place to mitigate these concerns? We suggest that DBS should only be carried out following an independent treatment review. Part of the role of this panel would be to clarify to the patient that they are not being coerced into treatment. Of course, the most powerful assurance that the patient could be given in this regard is to ensure that the patient would not be subjected to force-feeding, which they would presumably regard as a worst-case scenario that is to be avoided at all costs. Paradoxically, DBS might be most ethical in contexts where force-feeding is out of the question.
Authenticity & Reversibility
The second problem in obtaining valid consent to DBS in the context of AN arises as a result of the reversibility of DBS’s effects and the impact that it can have on the patient’s sense of personal identity and authenticity.
On the face of it, the reversibility of DBS, and the fact that patients could have a significant input into the control of their stimulation seems empowering. However, as I explored in the previous post, the changes that DBS might effect might be deemed to be inauthentic (see Baylis 2011 for an excellent discussion of this). This is particularly problematic in the context of anorexia nervosa, since the patient’s self-conception may be importantly bound to their condition.
The problem this raises is that patients may express different treatment wishes when they are on stimulation to those that they express once the effects of stimulation abate (Cabrera, Evans, and Hamilton 2014). In the context of AN, we might imagine that under the effects of stimulation, the patient might identify with the changes that DBS evinces, and expresses a wish to continue treatment. However, when the effects wear off, she may express horror at the effects of stimulation, and withdraw her consent to continue treatment.
Sufferers of AN often experience ambivalence towards their condition and treatment; the reversible effects of DBS might plausibly exacerbate this. Which wishes should we respect?
Those who claim that AN imposes pathological values onto the patient might claim that we should always respect the stimulated patient’s wish to continue treatment. However, this view rests on highly contestable claim about the competence of AN patients. Rather than making substantive assumptions that only desires with a certain content can be autonomously held, we suggest that clinicians should reject the assumption that there is one ‘true self’ whose wishes we should aim to identify. Instead, clinicians should consider the pattern and stability of an agent’s diachronic preferences both in the absence, and presence of stimulation; patients should be encouraged to reflect on both sets of wishes.
Really, this problem points to a much bigger issue about valid consent in the context of psychiatry. What role should the concept of authenticity play in informed consent? In their highly influential account, Beauchamp and Childress (2009) deny that informed consent should always be grounded by authentic wishes on the basis that it would make the standards that patients need to meet in order to provide valid informed consent to high; how many patients really identify with their treatment decisions as reflecting their ‘true self’? They suggest that all that matters for valid consent is that the patient understands material information pertaining to the treatment, and makes their decision intentionally in the absence of undue influence.
However, the prospect of using DBS in the context of psychiatry might require us to develop a more nuanced understanding of the relationship between authenticity and informed consent. The patient may meet Beauchamp and Childress’ conditions both on and off stimulation; how then are we to determine which wishes ought to be respected? If we want to avoid the unpalatable conclusion that we should only respect an ambivalent patient’s wish to continue treatment based on substantive assumptions regarding the nature of authenticity, then we need to answer deeper questions about the relationship between authenticity and valid consent.
References
Baylis, Françoise. 2011. “‘I Am Who I Am’: On the Perceived Threats to Personal Identity from Deep Brain Stimulation.” Neuroethics 6 (3): 513–26.
Beauchamp, Tom L., and James F. Childress. 2009. Principles of Biomedical Ethics. 6th ed.. New York ; Oxford: Oxford University Press.
Cabrera, Laura Y., Emily L. Evans, and Roy H. Hamilton. 2014. “Ethics of the Electrified Mind: Defining Issues and Perspectives on the Principled Use of Brain Stimulation in Medical Research and Clinical Care.” Brain Topography 27 (1): 33–45.
Grill, Warren M. 2005. “Safety Considerations for Deep Brain Stimulation: Review and Analysis.” Expert Review of Medical Devices 2 (4): 409–20..
Tan, Jacinta O.A., Anne Stewart, Raymond Fitzpatrick, and Tony Hope. 2010. “Attitudes of Patients with Anorexia Nervosa to Compulsory Treatment and Coercion.” International Journal of Law and Psychiatry 33 (1): 13–19..
Tan, Jacinta, Anne Stewart, Ray Fitzpatrick, and R. A. Hope. 2007. “Competence to Make Treatment Decisions in Anorexia Nervosa: Thinking Processes and Values.” Philosophy, Psychiatry, & Psychology 13 (4).
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