Palliative Care for Severe and Enduring Anorexia Nervosa
For patients with severe and enduring anorexia nervosa (SE-AN), palliative care should focus on improving quality of life, reducing suffering, and honoring patient goals rather than pursuing aggressive weight restoration when previous high-quality treatments have repeatedly failed.
Patient Identification and Assessment
Patients who may benefit from a palliative approach typically demonstrate:
- Diagnosis of anorexia nervosa that has become severe and enduring (typically present for many years)
- Older age (generally over 30 years)
- History of multiple high-quality treatment attempts without sustained improvement
- Clear and consistent determination that additional intensive treatment would be futile
- Decision-making capacity intact despite malnutrition 1
Palliative Care Framework
Goals of Care
- Focus on patient-defined quality of life rather than weight restoration
- Reduce physical suffering from malnutrition complications
- Support social and emotional functioning
- Honor the whole person and their autonomy 2
Intervention Approach Based on Life Expectancy
Years to Months Life Expectancy:
- Assess the meaning of anorexia/cachexia symptoms to patient and family
- Consider appetite stimulants if increased appetite is important for quality of life:
- Megestrol acetate (400-800 mg/day)
- Olanzapine (5 mg/day)
- Dexamethasone (2-8 mg/day)
- Consider cannabinoids in appropriate jurisdictions 3
- Treat depression if present (mirtazapine 7.5-30 mg at bedtime may help with both mood and appetite) 3
- Provide education about natural disease progression
- Focus on patient goals and preferences
- Offer emotional support to patient and family 3
Months to Weeks Life Expectancy:
- Recognize that nutritional support may not be metabolized effectively
- Continue monitoring symptoms and quality of life
- Provide family with alternative ways of caring for the patient
- Consider psychiatric consultation for comorbid conditions 3, 4
Weeks to Days Life Expectancy:
- Acknowledge risks of artificial nutrition/hydration (fluid overload, infection)
- Treat symptoms like dry mouth with local measures (mouth care, small amounts of liquids)
- Recognize that withholding or withdrawing nutrition is ethically permissible and may improve some symptoms
- Intensify palliative interventions for symptom control
- Consider specialized palliative care services or hospice 3
Symptom Management
Nausea and Vomiting
- Discontinue unnecessary medications
- Check blood levels of necessary medications
- Consider dopamine receptor antagonists (haloperidol, metoclopramide, prochlorperazine, olanzapine)
- For anxiety-related nausea, add lorazepam 0.5-1 mg every 4 hours as needed 3
Psychological Support
- Provide emotional and spiritual support
- Help strengthen relationships with family/caregivers
- Address existential distress
- Support patient autonomy while maintaining compassionate care 4
Special Considerations
Harm Reduction Approach
- May be appropriate for patients who cannot achieve full recovery but can maintain stable functioning
- Focus on minimizing medical complications while accepting some degree of ongoing illness
- Support social and occupational functioning 5
Ethical Considerations
- Recognize the tension between autonomy and beneficence
- Assess decision-making capacity regularly despite malnutrition
- Consider ethics consultation for complex cases
- Acknowledge that approximately 25% of patients with SE-AN do not benefit from involuntary treatment 5
Pitfalls to Avoid
- Assuming all patients with anorexia nervosa should receive aggressive treatment regardless of illness duration or previous treatment failures
- Confusing palliative care with giving up - this approach aims to improve quality of life, not hasten death
- Failing to reassess goals of care as the condition changes
- Overlooking the emotional needs of family members and caregivers
- Neglecting to provide adequate symptom management for physical complications of malnutrition 4
Palliative care for SE-AN represents a compassionate alternative when traditional treatment approaches have failed, focusing on quality of life and symptom management rather than cure. This approach acknowledges the reality that some patients with long-standing illness may not achieve recovery despite multiple treatment attempts 1, 2.