The Times of October 28th 2024 featured the question of palliative care for anorexia. Predictably this has generated a strong response from eating disorder activists, patients and carers who deem this a bad thing. Let me say that I write this as an eating disorder Advocate, not an Activist. Activism has value but is often based on personal experience; it represents a kind of passion akin at times to a mania generating strong views that can be biased, emotionally laden and preclude listening to other points of view that need airing. Can palliative care have its place among the care options for treatment resistant anorexia?
Palliative care is NOT ‘leave them alone to die’. Palliative care is a specialized medical care that aims to improve the quality of life for people with serious illnesses, including mental illnesses and to help relieve their suffering. It can be provided in many settings, including hospitals, nursing homes, and at home. Anorexia Nervosa is very special by invoking a compulsion to avoid treatment or only accept treatment that is destined to fail. (Quoting Janet Treasure). In early stages, people may deny that they are ill, there are aspects of the illness that give them joy or protect them from suffering even unto death, and this contributes to resistance to “best efforts” to help them. Low weight and malnutrition make the anorexic brain resistant to psychotherapy. Even where a person “wants” to recover, the means for that recovery are infinitely worse than staying as they are. Perhaps they want to recover but stay thin, in which case recovery is never achieved. Death may be preferable to “being fat”.
Anorexia also has profound effects on treatment providers who may fail a very sensitive patient by saying the wrong thing, by not knowing what to do next – because NO ONE has a treatment strategy that is guaranteed to work – and by eroding into the same helplessness that is faced by their patients. We live by cliches such as “we must not give up on them” and that “we must hold hope for them” – which we absolutely do, and this effort can feel overwhelming and a very lonely task.
I argued in an earlier blog against constant trying to treat people with treatment resistant anorexia, instead with each patient’s history in mind, perhaps we should just aim to keep these souls alive by any means possible including periods of enforced refeeding in emergencies, compassionately and for as brief a time as possible since anorexia is a form of psychosis so it could be argued that we are not abusing the patient, rather, we are facing down the illness that keeps them captive. This could be our main outcome until they find their own way (or not) to reach a turning point in their illness. Some do, and it is not always because they found the right therapist. It was just the right moment in time.
Where a person with AN has endured rounds of refeeding, and heinously costly inpatient stays, but little changes, perhaps we need to consider palliative care. This option focuses on improving quality of life for patients when traditional treatment options have failed. Here are several points in favour of this approach:
- Holistic Approach: Palliative care addresses the physical, emotional, social, and spiritual needs of patients. This comprehensive care model can help individuals with anorexia find relief from distressing symptoms that may not be effectively managed by standard treatments.
- Focus on Comfort: For patients who have not responded to traditional therapies, palliative care emphasizes comfort rather than curative treatment. This can include pain management and support for physical symptoms, promoting a sense of well-being even where the patient is desperately ill.
- Supportive Counselling: Palliative care includes compassion-based conversations, including about death but never as a threat of continuing to starve. Such conversations include how to live one’s best life despite grave disability, and the meaning of life. Such mentoring provides a safe space to address feelings, fears, and motivations.
- Family Involvement: Palliative care often includes family members in the care process, ensuring that they receive support and education. This involvement can enhance the overall care and understanding of the patient’s condition.
- Quality of Life: By prioritizing quality of life, palliative care aims to enhance the patient’s ability to engage in meaningful activities, find enjoyment in daily life, and improve overall emotional health.
- Interdisciplinary Team: Palliative care typically involves a team of health professionals, including doctors, nurses, dietitians, and social workers, who collaboratively develop personalized care plans tailored to the patient’s unique needs.
- Reduction of Shame and Stigma: Providing care that acknowledges the chronic nature of some eating disorders can help reduce stigma. This approach fosters an environment where patients feel accepted and understood.
- Externalising the Argument: Offering palliative care could in some cases galvanise recovery efforts. By returning the “wish to change” to the patient, the therapist is no longer seen to have responsibility for battling the anorexia. This is something that the patient will need to do on their own, and some do.
On November 26th 2024 The Royal Society of Medicine will deliver a daylong seminar on palliative care for mental health problems including eating distress. https://www.rsm.ac.uk/events/palliative-care/2024-25/plt01/
Please attend before you take sides, because palliative care can play a crucial role in the management of treatment resistant anorexia by addressing symptoms, improving quality of life, and offering compassionate support to both patients and their families. It is particularly valuable when conventional treatment options have been exhausted or when patients choose not to submit themselves to further aggressive treatments.