Working with Patients with Severe and Enduring Eating Disorders Who Refuse Further Treatment

By Joel Yager, MD
University of Colorado School of Medicine, Denver, Colorado

Every so often, clinicians encounter patients with severe and enduring eating disorders (“SEED”) who refuse further treatment.  In addition to eating disorders diagnoses, these patients often qualify for other diagnoses as well, many in the mood, anxiety, trauma-spectrum, personality, substance use disorder, and obsessive-compulsive disorder spectrums.  Such treatment-refusing patients with SEED come in two broad categories.

Patients Who Refuse Any Treatment

The first category includes patients who adamantly refuse to engage in any fashion with their professional providers. They may simply drop out of treatment and disappear from sight. Some of these patients manage to continue to live restricted lives for quite a while, whereas some die within a few months or years, usually from malnutrition or suicide. In my experience, patients who opt to drop out of treatment completely are in the minority. Few patients shun all contact with healthcare providers.

Patients Coping with SEED

The second group, who are more often encountered, are patients coping with SEED who still want something from professionals–usually (at least) contact, caring, and medications.  But, after years and years of treatment failures or modest improvements followed by inevitable demoralizing backsliding, this group of patients may energetically refuse to go along with treatment programs that focus exclusively on achieving full recovery or that require weight gains. These patients see both of these outcomes as unachievable. Many of these patients have bounced around from treatment center to treatment center, from medication to medication, from therapy to therapy, and from “evidence-based” protocol to “evidence-based” protocol.   After being repeatedly bruised in their earnest battles with their disorders, they’ve “had it.”

Consequently, these patients may decline to go on working with clinicians who insist on recovery-oriented goals, and they often regard the clinicians who still believe in the possibility of their full recovery as being deluded and Pollyanna-ish. Instead, based on their long, hard experiences, these patients “know” that re-engaging in recovery-oriented treatments would be futile, and that such efforts would set them up for failure, shame, humiliation, and, not inconsequentially, also would impose considerable financial burden.[1] These foreseeable consequences contribute to a long list of unintended but real potential iatrogenic harms. This group of patients judge their pessimism to be based on reality.

What Is Ethically Possible?

Ethically, what might clinicians do to help these patients?  Whereas some clinicians and programs refuse to treat patients who decline to commit to recovery-oriented goals, simply refusing to treat these patients carries its own ethical problems, sometimes bordering on abandonment.  Similarly, attempting to treat these patients by imposing involuntary hospitalization and treatment is also fraught with ethical, legal, and practical challenges.²  For example, few (if any) programs anywhere in the country are willing or able to assume responsibility for the prolonged, coercive treatment of involuntarily hospitalized patients who might require but consistently refuse nasogastric tube feedings.

Thankfully, alternative, supportable, and justifiable approaches to helping such patients exist. One of the earliest was detailed in the Community Outreach Partnership Program (COPP) developed at St. Paul’s Hospital and the University of British Columbia in Vancouver, Canada.  In contrast to recovery-focused treatments, the COPP program’s stated goals were to:

• Honor patient preferences for treatment goals and pace of treatment (rather than relying on goals determined by the treatment team).
• Favor harm reduction practices over symptom reduction.
• Improve quality of life via skills training and psychosocial rehabilitation programs.
• Establish physiological safety parameters for initiating medical stabilization.
• Treat patients in their own (home and community) settings (i.e., generally avoiding hospitalizations except for brief medical stabilizations if necessary to sustain life). [2]

These methods are included in formal practice guidelines developed for the treatment of patients with eating disorders published by the province of British Columbia. [3]

Reducing Harm

The core of this program is harm reduction.  Accepting that “The perfect is the enemy of the good,” harm reduction attempts to help patients maintain their weights at life-sustaining levels if they are unable to: achieve ideal healthy weights, suffer fewer episodes of binge-eating and purging if they can’t totally abstain, decrease their intake of alcohol and other harmful substances if they are unable to abstain, and  reduce the frequency of other self-injurious behaviors in order to mitigate damage.  Tactics include various elements of diverse psychotherapies and judicious use of medications.

Harm reduction approaches do not abrogate clinicians’ responsibilities for searching for and offering definitive cures or for motivating patients to participate in useful treatments – if these exist. Nor do clinicians practicing harm reduction “enable” illness behavior by simply going along with the patient’s desires to continue unabated self-harm. Rather, pragmatically, harm reduction approaches are implemented while clinicians wait for better treatments. Clinicians practicing harm reduction do what they can to apply splints to fractured egos, since splinting might not only afford relief but, coincidentally might help these egos heal to the best of their ability.  Removing the pressure to “get cured” can be remarkably beneficial for such patients— and may actually lead to modest improvements.

The COPP principles are consistent with philosophies of patient-centered treatments for patients with SEED.  The lack of evidence-based approaches for treating these patients and the need for flexibility in their care has been enunciated by others. ^4-7  Such flexibility often favors the use of “low-intensity” approaches, contrasting with “high-intensity” recovery-focused approaches.

In some instances, the flexible approaches have included formally enrolling patients debilitated by their illnesses in formal palliative care programs under the care of palliative care clinicians (who usually collaborate fully with eating disorders professionals).  While acknowledging that disease-modifying interventions might appear on the scene, palliative approaches for patients with severe and enduring eating disorders focus on quality of life, pain and symptom management, and the importance of treating patients with respect and dignity.[4] In extreme cases, for example, when patients might be expected to live for less than 6 months, these patients may even receive hospice care.[5]

‘Compassionate Witnessing’

In my own work, all these perspectives are couched in supportively engaging patients through an approach I’ve come to call “compassionate witnessing.”  This therapeutic alliance starts with high degrees of interpersonal attunement, empathic holding, and nonjudgmental positive regard. I aim to reduce patients’ existential fears of being alone in the world through humane validation, affirming their perceptions and experiences. Beyond sustained support, I favor light touches of motivational interviewing, together with realistic (not Pollyanna-ish) hope and encouragement, providing information and access to health and social options patients might wish to engage in, bringing new treatment possibilities and resources to patients’ attention. While inviting patients to explore options, I call out irrational judgments. I may be blunt, and I may even (selectively) invoke humor – and, depending on the patient, sometimes even (generally well-appreciated) dark humor. As patients decline physiologically, I will explicitly acknowledge and explore facts and feelings associated with their inevitable demise-which they will experience as will everyone else at some point. As suitable, I’ll see and engage family members, honor their experiences as well, and attempt relationship repairs where possible.

To sum up, my purpose here has been to document that clinicians have a great deal to offer patients with severe and enduring eating disorders. These patients should not be summarily rejected as “hopeless” cases.  As clinicians, we should be prepared to help alleviate their considerable suffering.[6] The fact is that there are lots of things we can do.

References

1. Yager J. The futility of arguing about medical futility in anorexia nervosa: the question is how would you handle highly specific circumstances? Am J Bioeth. 2015. 15(7):47-50. doi: 10.1080/15265161.2015.1039724. PMID: 26147266.
2. Williams KD, Dobney T, Geller J. Setting the eating disorder aside: an alternative model of care. Eur Eat Disord Rev. 2010. Mar; 18(2):90-6. doi: 10.1002/erv.989. PMID: 20099264.
3. Couturier J, Isserlin L, Norris M, et al. Canadian practice guidelines for the treatment of children and adolescents with eating disorders. J Eat Disord. 2020. Feb 1;8:4. doi: 10.1186/s40337-020-0277-8. PMID: 32021688; PMCID: PMC6995106.
4. Yager J. Why defend harm reduction for severe and enduring eating disorders? Who wouldn’t want to reduce harms? Am J Bioeth. 2021. Jul; 21(7):57-59. doi: 10.1080/15265161.2021.1926160. PMID: 34152907.
5. Lopez A, Yager J, Feinstein RE. Medical futility and psychiatry: palliative care and hospice care as a last resort in the treatment of refractory anorexia nervosa. Int J Eat Disord. 2010. May; 43(4):372-7. doi: 10.1002/eat.20701. PMID: 19444903.
6. Yager J. Addressing suffering in patients with psychiatric disorders. J Nerv Ment Dis. 2021 Apr 15. doi: 10.1097/NMD.0000000000001348. Epub ahead of print. PMID: 33857957.