Denial.
Subject: Dehydration (Physiology)
Anorexia nervosa
Authors: Opel, Douglas J.
Kelley, Maureen
Pub Date: 11/01/2010
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2010 Hastings Center ISSN: 0093-0334
Issue: Date: Nov-Dec, 2010 Source Volume: 40 Source Issue: 6
Accession Number: 268403531
Full Text: Pam is an eighteen-year-old with a history of depression. She has been hospitalized for the past six months for severe weight loss and dehydration. When admitted, she was diagnosed with acute inflammation of the pancreas and gall bladder, but it became clear that these issues were secondary to a diagnosis of anorexia nervosa. Her weight upon admission was seventy-six pounds. Pam refuses to accept this diagnosis and will not cooperate with any provider who refers to "anorexia" or attempts to discuss her eating disorder.

As a pragmatic strategy for providing care, the medical team has largely avoided referring to anorexia or eating disorders when treating her. But Pam is not the only problem. Pam's mother, the only family member directly involved in her care, also refuses to acknowledge her daughter's anorexia and has supported Pam's extremely restrictive requests to control her hospital meals as she regains her ability to eat by mouth. Prior to admission, Pam was living at home with her mother. She has no contact with her father.

Now that Pam's acute condition has improved, the medical team worries that any further complicity in her denial of her anorexia will hinder attempts to begin eating disorder treatment protocols. Consultants from adolescent medicine and psychiatry tried having a frank discussion with Pam and her mother about Pam's underlying eating disorder. This conversation only succeeded in making them both angry. Her mother ultimately threatened to "fire" these physicians.

The medical team and hospital decide to pursue involuntary commitment to treat Pam's anorexia if she does not agree to treatment. Yet when a consulting surgeon recommends that Pam's gallbladder be removed, Pam is allowed to consent to surgery. Soon thereafter she is evaluated by a mental health professional, who decides that Pam does not meet criteria for involuntary commitment. Pam insists she be discharged.

Her primary nurse couldn't help but wonder: does Pam have the capacity to make medical decisions, or doesn't she?

commentary

by Douglas J. Opel

The distorted body image and unrealistic perceptions that give rise to denial in anorexia pose an interesting ethical issue: how does this distortion and denial affect the patient's capacity to make treatment decisions? It could be argued that Pam's refusal to acknowledge her disorder represents a lack of the insight and comprehension required to make decisions about treatment. This, in turn, could call into question her decisional capacity and provide justification for involuntary commitment. The clinicians in Pam's case seem to be making this claim. But their other actions--such as obtaining Pam's consent to remove her gallbladder--seem to imply the opposite. How can we declare that a person both retains and lacks decisional capacity at the same time?

The answer to this question might simply be that assessments of capacity should be specific to the decision in question, rather than a global assessment. Therefore, even though we might think Pam lacks capacity to make decisions about her feeding regimen, we may still consider it appropriate to respect her autonomy in other decisions, such as whether to remove her gallbladder. But herein lies the rub: where does anorexia begin and end? Can treatment decisions in this case really be separated into "anorexia-specific" and "other"?

When it is difficult to discern which decisions are adversely affected by the patient's underlying disease, there are two possible ethical approaches: (1) err on the side of respecting autonomy and allow the patient to make some decisions that perhaps she does not have the capacity to make, or (2) err on the side of protecting the patient by narrowing the scope of decision-making authority, thus failing to fully respect the patient's autonomy. Option one has practical appeal in this case because of the need to engage the patient in her recovery with a disease that is centrally about control. However, option two seems to have equal appeal for anorexia and other mental illnesses because of the difficulty in determining the effect the disease has on any decision.

Even though the standard model of decision-making capacity is not a global assessment and option one is likely the path most people would prefer, I think Pam's case should make us pause. First, given Pam's lack of capacity to make feeding decisions, I think there are situations where her reasons for agreeing to a cholecystectomy matter. For example, if the surgeon's recommendation is merely that her gallbladder can be removed, but that doing so is not essential, then her reasons for wanting the surgery are important--for instance, what if she wanted her gallbladder out because getting rid of an organ would allow her to lose more weight? (Of course, if there are clear medical indications for the cholecystectomy, Pam's reasons for consenting would not matter.) Second, it seems artificial to put decisional boundaries on a disorder like anorexia. While there is a spectrum of how pervasive the distorted thinking in anorexia is, it certainly can be so pervasive that it penetrates one's identity. In these situations, any attempt to determine an "anorexia-specific" treatment decision is meaningless. Although Pam's case may not be this severe, the psychological component of her disease seems to be significant enough that its global effect on her decision-making should be considered.

Pam's case highlights the difficulty in distinguishing her anorexia from her other medical issues and consequently, the difficulty her clinicians face in trying to protect her from harm while respecting her autonomy. Pam challenges us to rethink our approach to determining capacity in mental illness. Perhaps we should err on the side of patient protection by narrowing the scope of decision-making authority.

commentary

by Maureen Kelley

The psychological features that many anorexic patients show--clinical depression, delusions, a distorted body image, and the need for control--can hamper their capacity to make safe choices about their health, limiting their ability to give informed consent. A patient's fixation on being thin often supersedes all other values, including survival. While harmful preferences are often honored in adult patients out of respect for autonomy--respecting a patient's freedom to make choices, albeit not necessarily good ones--when teens and adults express suicidal ideation, more paternalistic interventions are usually viewed as ethically warranted to prevent immediate harm to self. Patients suffering from self-inflicted, chronic starvation are slowly killing themselves, yet the bar for involuntary commitment remains fairly high, as reflected by the refusal to commit Pam to a rehabilitation program. So why was this not done to keep her safe?

The explanation for this seeming ethical inconsistency is partly pragmatic and partly rooted in an appeal to long-term consequences. Caring for young adults with anorexia can be challenging and heartbreaking for medical teams and families alike. While short-term, involuntary treatment may be necessary if a patient's medical situation is critical, evidence shows that the best chance for long-term recovery in a rehabilitation program occurs when patients come to voluntarily accept treatment. Supportive family members and a trusting relationship with care providers are essential to this process. Yet control and denial are central features of this illness, and Pam's mother is complicit in her denial. Given these facts, how do you save Pam from herself?

Patients like Pam are often smart, driven achievers. Despite their illness, they are capable of functioning well, of hiding harmful behavior, and of manipulating parents, family, and the care team. Pam's attempt to dictate the hospital menu, deny her diagnosis of anorexia, and fire hospital staff illustrate her desire for control. Because she refuses to address her underlying illness, the team can do little more than respond to the acute symptoms of that illness. Yet by playing along with the charade, Pam's mother and the care team are complicit in Pam's denial, preventing her from taking the first step in facing her disease. For this reason, the team should insist on honesty as a necessary part of a successful care plan. Presenting a united front could possibly defuse the threat of being fired.

Not unlike long-term treatment for substance abuse or serious depression, long-term recovery from anorexia requires a cooperative, committed patient. For anorexic patients, relinquishing control over weight and food can short-circuit this process. When treating a disease that is centrally about psychological control, a strategy of "tough love" that takes decision-making rights away risks undermining what trust exists between the team and the patient and losing the patient to follow-up.

Hope for patients like Pam will likely be found in a strategy of compassionate but honest support, persistence, and creative but firm negotiation from the medical team and family--for example, making enrollment in an outpatient eating disorder program a condition of discharge. Unfortunately, the ideal of shared decision-making between patient, physician, and family is predicated on honesty about the diagnosis and supportive family members who will back the medical team. If Pam's mother can't appreciate the gravity of her daughter's situation, perhaps another family member--her father, grandmother, aunt, or even a close friend--could help Pam face her illness, so that over time, she can find healthy alternatives to harmful self-deprivation.

Even with family support, however, the road to recovery often involves medical crises and multiple admissions. Clinical teams may face the difficult decision to discharge a patient who is slowly starving herself and wait for her to get sick and scared enough to voluntarily enter a treatment program. The hope is that by working toward a support network that values honesty rather than reinforces denial, patients like Pam, when confronted with a choice about treatment, will be more likely to find the strength to make healthy decisions.
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