This post has been updated on November 16, 2023 to include a proposed treatment care model published in September 2023 and to clarify terms used.
Note that palliative care is not the same as hospice.
Palliative care (PC) is a type of medical care that aims to improve the quality of life for individuals with serious illnesses. People in palliative care may receive medical care for their symptoms along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family. There is no time limitation.
Like palliative care, Hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person's illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.
Two years ago, I wrote a post supporting palliative care as an option for a person diagnosed with a severe and enduring eating disorder - often referred to as SE-ED or SE-AN. I believe that an adult who has been struggling with an eating disorder for a very long time - some put the stage at ten years or more but given so many advances I would argue for 20 years or more - without successfully getting into recovery ought to have the option of receiving palliative care. I also believe that the cost of palliative care should be covered by one's insurance policy including Medicare and Medicaid.
A palliative care model appeared in a peer-reviewed paper published in The AMA Journal of Ethics (September 2023 Volume 25 #9: E703-709) titled "A Life Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa" by Jonathan Treem, MD, Joel Yager, MD, and Jennifer L. Gaudiani, MD, CEDS. If your family member's illness is entrenched, I encourage you to read their paper.
The peer-reviewed paper provides a model that is designed to enhance the lives of people who otherwise might lose the will to live. I tried something similar three years ago but because the program I proposed was not fully supported by my daughter or realized because some staff members weren't clear on their roles, it didn't work (see below for a description). I do think my daughter might have had a chance but the odds were not good at that point.
On March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by the international organization F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City. Several presenters at ICED came to provide summaries of their presentations. The concept of severe and enduring eating disorders was raised and discussed and I offered to initiate a discussion that would generate a document - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.
At that 2019 meeting and since then, I learned in private discussions as well as on the F.E.A.S.T. gathering place called Around the Dinner Table or ATDT, for short, and on private Facebook groups, there are many people whose family members or friends are struggling with an entrenched eating disorder. Yet few talk about it. The climate is for hope but sometimes the strong expression of hope comes at the expense of the feelings of those who sense that it's time to consider something else. We must help those families.
Unfortunately, I was unable to follow up on my offer. My family member's health continued to decline and her welfare came first. We began to discuss palliative care.
As we know, many people with eating disorders - especially anorexia - whose illness becomes entrenched are also dealing with multiple diagnoses such as extreme depression, generalized anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder. They may have turned to substance use and become addicted because no pill or treatment yet exists to stop their disorder. In other words, they are self-medicating, perhaps with something as benign as nicotine or as destructive and dangerous as illicit drugs. We have learned these illnesses must be treated concurrently for recovery to be a possibility.
They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined by the staff to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!).
They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or needed short term hospitalizations over many years to stabilize.
And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level of care too soon.
Or, their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized.
So, they demand to be discharged against medical advice (AMA) thereby potentially and usually losing the ground they gained while hospitalized. Consequently, many have given up on treatment, regarding themselves as failures. Many have become poorly motivated, socially isolated, chronically ill, are filled with despair, and lack trust that anything might work and have carried on this way for more than 20 or 30 years.
Now imagine people who have been struggling a long time with these, now chronic, illnesses. Their lives have become subsumed and even the glimmer of the idea of a life worth living may have evaporated. Maybe all they want is to fall asleep and never wake up. They know they will need ongoing psychiatric and medical care for the rest of their life to address cyclical weight loss and potential electrolyte imbalances as well as heart arrhythmias, osteoporosis, loss of muscle including muscle of their heart, malnutrition and other side effects of more than 20 or 30 or more years of cyclical starvation as well as, for example, binging and purging.
I believe Palliative Care must be an option yet, again, the concept immediately brings to mind hospice, which palliative care most definitely is not. Yet here in Arizona and I imagine elsewhere in the United States and around the world, the practice of palliative care for those who are chronically ill with anorexia is still in its infancy and unless the individual has endured kidney or liver failure, for example, even palliative care is deemed unavailable to them as I had learned four years ago when my daughter first asked to explore this option.
Anorexia carries the second highest death rate of any mental illness.
In 2019, Dr. Jennifer Guadiani published [Routledge Press] her outstanding medical text Sick Enough: A Guide to the Medical Complications of Eating Disorders.
Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders. Not only does this medical text, written for both the professional as well as the parent, address all manner of complications of eating disorders, Dr. Gaudiani also devotes a section to older patients and to those with substance use disorders (more common than you might realize). Yet to me, given the stage of the illness for my family member, the most valuable chapter is Chapter 22 titled Caring for the Patient Who Declines Treatment: The Spectrum from Mandated Treatment to Hospice Care. Pages 240-241 are relevant to this discussion.
Rather than spend a lot of time paraphrasing what Dr. Gaudiani has written, I decided to quote a section titled Palliative Care in Severe Persistent Mental Illness on page 240 because I think this goes to the heart of what I believe is absolutely necessary in the spectrum of care for those with severely entrenched eating disorders.
Dr. Gaudiani writes, "....There is no magical number that qualifies a person for palliative care, no number of times hospitalized, age, years with the disorder, medications tried, nor expected prognosis. Ultimately it's the whole story of each patient that helps guide clinicians....."
Dr. Gaudiani goes on to write, and I emphasize, "....Palliative care efforts can go on for years. If and when a patient becomes sufficiently nutritionally compromised that they are unable to care for themselves independently, a move toward hospice services can be made."
So....the second time my daughter raised the subject of Palliative Care during the year before her death, I contacted a local agency that advertised "medical care for life" and explored the concept with the director and what might be organized to address the specific needs of my family member.
It is important to emphasize although the diagnosis might be the same, each person is an individual with a history that dictates specific needs.
Since my daughter was rejecting hospitalization because a local hospital's psychiatric staff appeared to no longer be able to consider her case objectively, we needed to develop a plan that would provide her treatment in her home and at the same time recognize and identify those situations when hospitalization to address her medical needs was necessary. Her team plan included oversight by a nurse practitioner who would visit once a month, another nurse who would visit weekly or more often as necessary, a psychiatrist to prescribe medications, and a therapist/MSW social worker. She would continue to see her medical doctor as well as check in with her mental health agency's psychiatrist and team, all who were in agreement with this approach. The cost was reasonable ($400/month) and would be paid out of pocket. This plan never got off the ground due to many ongoing factors but I offer it as a possibility.
Instead, the pre-existing team members continued to do all they could to provide her with important elements that eased her anxiety and supported her medical and psychiatric needs for which I am very grateful.
Certainly Palliative Care should become an option for those who need the support and comfort that is not currently available for those diagnosed with a severe and enduring eating disorder. I urge professionals in this field who might be reading this essay to explore the widest range of options and to fight for and request legislation to support a different level of care provided by medical insurance for their patients who have severe persistent anorexia nervosa.