Future Directions for the Autonomy Debate: Using Neuroscience to Inform Clinical Assessments of Capacity to Consent and Compulsory Treatment for Anorectics
Abstract—The principle of autonomy is of preeminent importance in the field of bioethics. However, if a person is found to have cognitive impairments affecting their ability to understand and make rational decision, as in the case of mental illness, the person’s right to consent to and refuse treatment may be denied. The issue of autonomy and the right to refuse treatment has been especially contested in the case of restrictive anorexia nervosa. Treatment for anorexia typically includes the restoration of body weight, which a large number of patients resist, resulting in clinical decisions to pursue compulsory treatment. In this paper, I raise the question of how new developments in neuroscience may inform the debate about compulsory treatment of anorectics. I argue that emerging data on the structure and processes of the brain, the cognitive basis of consent, and the neurological mechanisms controlling weight and appetite must inform future debates regarding compulsory treatment of anorectics.
Anorexia nervosa is a psychiatric disorder characterized by excessive preoccupation with body size and weight. The "restricting type" of anorexia is defined as severe restriction of food intake leading to weight loss of less than 85% of that expected. Successful management of patients with anorexia is oriented primarily towards medical stability and the restoration of body weight so that normal body functioning (e.g. menses) is resumed. The primary symptom of anorexia, namely the "intense fear of gaining weight," complicates treatment effort by leading the patient to resist treatment, both prior to and post-admission. Treatment refusal becomes more pronounced as the illness progresses, due partly to the fact that the anorectic becomes conditioned to experience starvation as rewarding, and eating as painful. Left untreated, anorexia nervosa is potentially fatal, and the mortality rate associated with the condition (5.9%) is greater than any other psychiatric condition (Sullivan, 1073). Because of the severity of the illness, compulsory treatment, which may include but is not limited to forced feeding, is often proposed in the event of persistent treatment refusal.
Some have argued that compulsory treatment for anorectics is an unacceptable violation of the principle of autonomy and respect for persons. The decision to pursue compulsory treatment is also complicated by efforts to determine levels of mental incompetence or irrationality in the anorectic patient. The general question concerning the capacity to consent in mentally ill individuals has long been discussed in medical ethics and mental health law. Discoveries in the field of neuroscience are moving this discussion in new directions by presenting scientific data related to specific cognitive deficits relevant to consent. This paper will examine how current neuroscience data as well as potential future data may reframe the question of autonomy and the role of coercive treatment with anorectic patients as a matter of clinical practices.
I. Informed Consent in Psychological Services
The first principle identified by the Belmont Report is "respect for persons," which "incorporates at least two basic ethical convictions: first, that individuals should be treated as autonomous agents, and second, that person with diminished autonomy are entitled to protection." Faden and Beauchamp claim that respect for persons means that individuals "should be free to choose and act without controlling constraints imposed by others (8). Typically, consent is valid if the patient is able to express a choice, able to understand the information involved, able to appreciate the personal relevance of the information, and able to reason logically in their decision. "Competence" is a legal term denoting one's mental capacity for decision-making. Only a person deemed "competent" is allowed to make decisions regarding treatment refusal. Ethical problems clearly arise in the field of psychology and psychiatry where patients are presumed to have cognitive impairments impeding their ability to understand, conceptualize, and recall important information necessary as a prerequisite to their consent.
In recent years, the right and ability of mentally ill patients to consent to and refuse various treatments has been fiercely debated. If a patient is deemed incompetent due to a mental disorder, they may be denied their right to consent to and refuse treatment, and the authority to make decisions regarding physical and mental treatment may be shifted to a family member or other legally-appointed figure. Determining competence to consent depends on a neuropsychological assessment, further complicating matters because such assessments also require consent. Many patients choose not to undergo a neuropsychological evaluation when they understand that the results jeopardize their future prerogatives to make decisions about their treatment. Mental illness, however, should not be equated with incompetence, as competence must be related to the specific decision at hand.
Anorectics rarely experience pervasive disturbances in their general ability to reason, calculate, remember, and make judgments. Mental impairment is generally restricted to specific concerns related to food, body weight, and image, and the question of competence usually centers on their specific ability to make rational decisions about nutrition and other medical treatments. However, avoiding treatment is a common expression of the illness among anorectics. The patient may insist that he or she is perfectly fine, even in the face of advanced emaciation and extreme weakness: "The eating-disordered patient is often highly articulate and convincing about her opinions about the advisability of such treatment. Except for the most emaciated patient who looks very ill, most eating-disordered patients do not have the obvious changes in mental functioning that may accompany such illnesses as schizophrenia" (Lackstrom and Woodside 115).
Many patients do not refuse all treatment: some may accept psychotherapy or family therapy, but may refuse aspects of treatment that include increased caloric intake, reduced physical activity, and induced weight gain. Those involved in both the physical and mental treatment of anorexia may be able to overcome the patient's refusal by bringing in a close family member to facilitate the decision-making process, or by personally engaging the patient over a period of time in order to bring them into a genuine alliance with their caregivers. Nevertheless, a minority of patients resist all strategies to overcome their refusal, thus raising the question of compulsory treatment.
With patients who are gravely physically ill, providing emergency treatment presents no dilemma for the clinician. However, the criteria used to override the need for consent in the case of a medical emergency do not necessarily apply in the case of the anorectic who refuses hospital or clinical admission as well as parenteral and enteral nutrition. The Mental Health Act Commission has issued guidance on the treatment of anorexia nervosa, which recognizes it as a mental disorder and accepts that some patients may have compromised ability to consent. The Mental Health Act Commission recommends "that in certain situations, patients with severe anorexia nervosa whose health is seriously threatened by food refusal may be subject to detention in hospital and further that there are occasions when it is necessary to treat the self-imposed starvation to ensure the proper care of the patient. . . naso-gastric feeding can be a medical process, forming an integral part of the treatment for anorexia nervosa (Mental Health Act Commission 1997). Though most treatment programs for anorexia treat the ethical issues of compulsory treatment only briefly in their literature, the general consensus is that compulsory treatment should be used only as a last resort, initiated only when the patient is in extreme mortal danger.
The issue is further complicated by the lacuna of empirical studies on the issue of compulsory treatment for anorectics. There is no conclusive research-based data to evaluate the efficacy of compulsory treatment, and there is little data on the eventual outcome of those who refuse treatment. Ramsay, et. al. report in their study on "Compulsory Treatment in Anorexia Nervosa" that a statistically significant higher mortality rate (10 of 79) was found in the group of compulsorily-admitted AN patients, but conclude that "the findings of an increased mortality rate should not be misread as reflecting adversely on the compulsory treatment. In spite of a theoretical objection that the therapeutic relationship may be damaged by a compulsory detention, our clinical observations indicate the converse" (Ramsay, 147). Ramsay et. al. recommend reminding patients with apparently intractable anorexia nervosa that many recover after ten years or more, and that "compulsory treatment may be an act of compassion: it shows that the professionals recognize the severity of the illness and that they are prepared to contain the anxieties provoked by weight gain. Often patients and their families are immensely relieved to hand over responsibility, temporarily, to the professional team" (Ramsay 152). Because the question of consent has been limited by lack of empirical studies, future directions of this question may be guided by developments in the field of neuroscience, to which we now turn.
II. Neuroscience and Bioethics: Reevaluating Autonomy and Capacity to Consent
Speculative questions within bioethics about the concept of mental illness and the ethics of psychiatric treatment are potentially undergoing great developments in light of the rise of techniques used to study the functioning of the brain in vivo, as well as the rise of the range of technologies used to subtly alter the brain and its functioning. Just as the field of medicine is being revolutionized by new techniques of gene sequencing and other genetic technological advances, so too are new techniques of magnetic resonance imaging, transcranial magnetic stimulation, "smart drugs," and behavioral genetics opening up new possibilities--and new ethical questions--in the field of psychology and clinical psychiatry. One such area that neuroscience may make a huge contribution deals with the psychological preconditions for the capacity to consent, and the limit of autonomy in the case of mental illness.
The contribution of neuroscience to the question of consent is multi-fold. First, neurotechnology offers more advanced scientific data related to specific cognitive deficits relevant to consent, which has a direct impact on psychiatric diagnostic criteria, limiting the extent of psychiatric disease classification, and providing objective bases, derived from the structure and processes of the brain, for classifying a brain as "abnormal." The implications for such developments would have a great impact on questions about the possibility of treating certain psychiatric symptoms and the potential success of coercive treatment in mental health.
Regarding eating disorders specifically, there have been remarkable developments in the last two decades in our understanding of the neurological mechanism controlling appetite and weight. Appetite homeostasis is achieved by a complex network thought to be governed by the hypothalamus. Central components of the anabolic and catabolic networks, including components of the HPA axis, serotonin, and neuropeptide Y, as well as peripheral mechanisms like leptin, cortisol, and insulin control body composition and appetite. Certain data suggest that these components may play a major role in meal size and appetite in anorectics (Connan and Treasure). If loss of appetite or refusal to eat (coupled with a refusal of all treatment which includes increased caloric intake) may be explained by serotonergic abnormalities, cortisol excess, estrogen deficiency, or other abnormal hypothalamic neuroendocrine responses, this may change the nature of compulsory treatment.
Another area where neuroscience may potentially have a great impact on the field concerns the cognitive basis of consent. Neuroscientific data is developing a richer understanding of the nature of consent which is based on the idea of "degrees" of capacity, rather than a simple threshold (Martin and Ashcroft 5). Recent advances in the neuroscience of emotion provide compelling evidence that the decision-making process, including the act of giving consent, is not exclusively cognitive, nor can decisional capacity be assessed by purely cognitive means such as the Mac Arthur Competence Assessment Tool (MacCAT-T). Integrating more neuroscience studies on the complexity of the consent process could lead to a "multifactorial and quantitative account of the components of capacity" which could lead to clinical developments that enhance the necessary components to improve decision-making (Charland, 6786). For example, fear and anxiety may impair an anorectic's ability to consent to treatment, which may be enhanced by introducing a known and trusted confidant to the consent process.
The third area where neuroscience may revolutionize the field of clinical psychology and bioethics regards policy. In clinical practice, the issues of decision-making and informed consent for the mentally-incapacitated are a major policy issue. The policy response has focused mainly on advance directives and powers of attorney (framed while a person is still competent, and often not relevant for the anorectic), the application of standards of best interest for the mentally incapacitated patient (standards which are subjective and controversial in their application, especially in the case of compulsory treatment for anorectics), and the appointment of authorized representatives to make decisions on behalf of the patient while incapacitated. The policy response has been based largely on philosophical and social reasoning, rather than empirical evidence about the structure of the brain. The integration of neuroscience can provide more objective criteria for these policy decisions, as well as provide a basis for mental health law reform. The position of the courts regarding the limited legal disputes over compulsory treatment has been to uphold forced feeding, a position which could change in light of the introduction of neurological data and new ideas about alternatives to consent.
III. New Directions, New Challenges
The issue of compulsory treatment, including forced-feeding, for anorectics has been greatly debated in recent years. As Simona Giordano rightly identifies, the question of compulsory treatment is an "empirical" problem:
People with eating disorders are typically intelligent, and are not at all the stereotypical 'insane' person, detached from reality. People with eating disorders are generally skilled, intelligent, and able to run their life in many important ways, like everybody else. It is hard to believe that all of them, when they refuse treatment, are incompetent. Given that we are dealing with intelligent and generally competent people, it seems that one cannot assume a priori that every time a person with eating disorders refuses treatment, she is incompetent. It seems that their incompetence should be assessed, not presumed (Giordano 2005, 193).
However, assessing the capacity of eating-disordered people to refuse treatment is laden with difficulties and is part of a much larger debate concerning the bioethical principle of autonomy, and the capacity of mentally-ill patients to consent to treatment. What does it mean to be competent to refuse treatment? What is a mental disorder? When does a mental disorder render a person incompetent? When is an action autonomous? Can eating-disordered behavior be considered at all "autonomous?"
These questions are being revolutionized by new developments in the field of neuroscience. Of course, the potential impact of these questions for both clinical applications, as well as new directions in bioethics, are limited by the available technologies, and like the field of genetics, many of these questions are purely speculative. The rapid advance of neurotechnologies and methods, however, demand that we begin to ask how the integration of these technologies and methods may impact the medical and social sciences.
The integration of neuroscience and neurotechnologies into bioethical debates about autonomy and capacity to consent will not be without its difficulties, and will give rise to new challenges in bioethics. Neuroscience may undermine psychiatric models of assessing consent and psychotherapeutic approaches to treating anorexia nervosa. This could lead to a further pathologization of anorexia, to the neglect of other causal factors such a family systems, socio-cultural influences, and other psychologically-relevant antecedent events. Anorexia nervosa, like many other mental illnesses, is a multidimensional disorder that results from a complicated interplay of physiological, psychological, and social factors. Neuroscience may be useful in informing clinical assessments of anorectics' capacity to consent, but it cannot replace other clinical assessment tools to both evaluated capacity to consent, and to treat anorexia.
On a final note, neuroscientific data on anorectics may lead some clinicians to view certain cases of anorexia as truly incurable. If this is the case, clinicians will need to face difficult decisions about pursuing palliative care rather than therapeutic treatment. This raises questions of beneficence and non-maleficence as well as concerns about quality, rather than quantity, of life. If neuroscientific data indicates that certain cases of anorexia are incurable, or that patients with anorexia have capacity to consent even whilst continuing to refuse treatment to the point of death, can it ever be consistent with a doctor's professional responsibilities to allow a patient to forgo treatment and sustenance? Neuroscience will not answer any of these difficult questions, but it has already, and will continue to contribute valuable empirical data to inform the debate about autonomy and capacity to consent, and move that debate into the future.
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