F.E.A.S.T. POSITION STATEMENT
July 7, 2019
EUTHANASIA AND EATING DISORDERS: Context and Media Coverage
Recent news reports of a 17-year old Dutch eating disorder patient who died of starvation after asking for euthanasia services have raised a worldwide discussion around eating disorders. As an organization of and for family members of those affected by eating disorders, we feel it is important to offer our perspective on the media coverage of this issue.
We want to make it clear that we are not able to speak to the specific and deeply tragic death of Noa Pothoven in June 2019. We cannot and do not speak with specific or personal knowledge of her family, treatment, or her legal situation, and can only speak of the issues surrounding such a case. It is our observation that the case has been discussed widely, and often inaccurately, in the international press. While Pothoven’s request for euthanasia was denied, she did die at home in June 2019.
Our sympathy for her family is particularly sharp. In our community, we are all too familiar with the disabling and lethal consequences of eating disorders. We extend our deepest condolences to Noa Pothoven’s family and all those affected by her loss.
It is one of our central tenets as an organization that eating disorders are treatable. Regardless of the cause of the illness or the treatment history to date, we believe the science supports pursuing treatment for eating disorders even in cases that have been unsuccessful or complex. No eating disorder sufferer should be considered beyond help. As is often quoted in our parent forums: “While there is life, there is hope.” Marcus Tullius Cicero
F.E.A.S.T. holds that hope for all who can be reached and supported, and their families.
June Alexander, a longtime advocate who serves on our Advisory Panel, expresses our urgent message:
“Let’s remember that although eating disorders have extremely high death rates and cause often intolerable suffering, they are not a terminal illness. They are a treatable illness.”
New Prognosis Data
In the past, pessimism about the prognosis of eating disorders after the first few years of treatment was assumed. A more recent analysis of available data sheds light on the tragic inaccuracy of that assumption. Not only are treatments improving over time, but longitudinal analyses are showing a greater optimism for recovery as seen in a recent study that indicated that after 22 years of illness, 63% of those with anorexia nervosa were fully recovered. Fully half of those recoveries were after over nine years of being unwell. Data for bulimia recoveries also had longer horizons than formerly believed: recovery rates reaching 68% in the first nine years.
Dr. Craig Johnson, Senior Consultant at Eating Recovery Center, puts this in context:
“We should be very cautious about giving up hope for recovery too soon. I have been caring for these patients for over 40 years and during this time I have witnessed many patients achieve full recoveries after struggling for decades with these illnesses.”
Concerns about Coercion and Force Feeding
Often those experiencing eating disorders are left not only resistant to treatment attempts but sometimes unable to see how impaired they are. Family and treatment providers can have concerns about “forcing” a person to be hospitalized or nourished, or to be limited in compensatory behaviors. It is useful to assess for “anosognosia,” a brain-based deficit in insight about the condition itself. Research indicates that those put into treatment against their wishes still recover at similar rates to those who are not.
No Easy Answers
Our community also acknowledges that not all eating disorder patients will recover. These are tenacious and dangerous brain disorders that uniquely challenge our treatment, legal, social, and family systems. Those experiencing eating disorders are often not ONLY facing an individual eating disorder diagnosis, but other health and personal challenges, including co-occurring psychiatric issues. Those with longer courses of illness also suffer from health challenges, losses of relationships, and financial burdens. We cannot expect those suffering from eating disorders to maintain a focus on recovery when they are unwell, and not all sufferers have others to hold that hope for them.
Eating disorders are often accompanied by symptoms that defy intervention and exploit the gaps in our social and healthcare systems. Families and supports , are often not equipped with information or the ability to contain these powerful symptoms or lack access to treatment that will support them in doing so. The resources for eating disorder treatment are, at this time, scattered and overstretched in most areas of the world. Most treatment, while well-meaning, is not grounded in up to date understanding of the neurobiological and nutritional course of the disorders. We cannot blame patients or their families for these gaps. We must accept that it is our responsibility as a society that only a fraction of those with eating disorders ever get treatment, and those who do usually do not get enough.
As more countries offer the option of medically ending one’s life when near death, or euthanasia when suffering is unremitting and untreatable, eating disorder patients seeking to end their lives present unique questions. F.E.A.S.T. has observed in recent years a growing number of families being asked by loved ones about the option of euthanasia or assisted suicide.
These are not simple issues:
- Suicidal thoughts, despair, and anosognosia are common symptoms associated with eating disorders
- Patients are often asked to show motivation and compliance to access treatment
- Families are routinely exhausted, unsupported, and bankrupted for care that stops before remission and each treatment attempt depletes resources
- Those with eating disorders are often extraordinarily articulate and intellectually engaged, despite demonstrable impairment in perception and insight around the eating disorder
- Patients often suffer from debilitating health conditions and disability after years of dietary restriction, binging, or purging. Heart, bone, digestive, and dental health are often permanently harmed.
- Relationships are also casualties of protracted mental illness, and those with eating disorders can be isolated and alienated from their community.
Our community’s concerns
As an organization of family members, the idea of euthanasia, assisted dying, and assisted suicide for eating disorder patients hits us particularly hard. We know that the feeling of despair and lack of hope can be temporary, and we know that our loved ones cannot always see the future or the past as we can.
We know that the despair of our loved ones is real, and we want to alleviate it because we love them and feel a duty to take action on their behalf.
We fear our voices will not be heard or understood because we know how movingly and articulately clear our loved ones sound to others even when they report symptoms and events inaccurately or without context.
In the F.E.A.S.T. community, there are many among us whose loved ones lost their lives to suicide or have survived suicide attempts. Many families among us whose children were suffering so deeply at some points that they asked to die, went on to not only survive but to full and robust recoveries.
Lived experience and expert voices
In the words of one F.E.A.S.T. mother, Lisa T:
“My daughter begged her doctor and us to let her go to palliative care as she was unable to see a way out. Today she’s alive and healthy because we understood and fought for her.”
Another parent in our community, Judy Krasna, F.E.A.S.T. Board Member and parent advocate in Israel describes her feelings this way:
“The most responsible thing that I can do as a parent is to never give up on my daughter, despite all odds, because recovery is always possible, even when it’s improbable.”
In her 2019 testimony before the Maryland Senate considering an Assisted Suicide bill, representing the Maryland Psychiatric Society, Angela Guarda, MD, Director of the Eating Disorders Program at The Johns Hopkins Hospital, published here with her permission:
“I had two recent cases change their mind and contact me from hospice, where they were certified as terminally ill by their physician. Both improved dramatically with appropriate treatment and left hospital hopeful for their future. Under this (assisted suicide) bill they could be dead.”
F.E.A.S.T. Advisor, Jacinta Tan, MD Ph.D., who has studied the issue of compulsory treatment, calls the idea of assisted dying for people with eating disorders “very concerning.”
“Eating disorders can impair capacity to make decisions. In some cases, the despair and loss of hope that sufferers feel are related to the lack of appropriate, compassionate treatment and support. We need to focus more energy in developing and providing more effective treatment approaches to support people with eating disorders and their families and alleviate suffering, irrespective of age, severity and chronicity.”
Vital considerations for media
F.E.A.S.T. offers the following considerations on euthanasia and assisted suicide when it comes to eating disorders:
- Lack of motivation and insight should be considered symptoms, not lasting or true beliefs
- Patients who appear competent and in control may be significantly impaired
- High levels of intellect and physical stamina can remain despite significant impairment in other domains
- A desire to die should be regarded as it would with depression
- Withdrawing treatment can easily lead to death, especially with chronic eating disorder sufferers
- Undernourishment, bingeing, purging, and over-exercise should all be considered as we would substance use: impairing ability to make life or death decisions
- Successful treatment does not require the hope of recovery at all stages of care
- A growing alternative to active treatment, harm reduction, is a consideration
- Family and clinicians may have significantly different perspectives than the patient and may hold long-term observations of a case that the patient does not hold in the moment.
The F.E.A.S.T. Board of Directors does not believe euthanasia, assisted dying, or assisted suicide are an appropriate recommendation when a patient believes that their life is not worth living or likely to recover. These beliefs are known symptoms, neither uncommon nor unexpected during treatment. Eating disorders are treatable, even when the patient does not hold that hope.
We believe strongly that eating disorder symptoms complicate issues around decision making and prognosis. We urge any family or clinician facing questions about letting patients die, or being assisted in dying, to carefully reflect on the considerations above.
A survivor’s voice
To conclude, the message of Shannon Calvert, a Lived Experience Advocate, and survivor of SEAN (severe and enduring anorexia nervosa),
“I felt desperate and begged to die. I believed that ending my life was the only way to destroy the abuse that was anorexia. The key was having others (YOU, clinician/loved one) not give up. Yet, I finally experienced someone just as persistent as my eating disorder. I didn’t believe anyone would ever beat it down with compassion, but I am more than grateful to admit I was wrong.”
The F.E.A.S.T. Board of Directors
Assisted Dying, Assisted Suicide, Voluntary euthanasia: are not the same.
There is a clear difference between helping someone to die who is terminally ill and helping someone to die who is not.
Assisted dying: allows the terminally ill person to have a choice over the manner and timing of their imminent death. Terminally ill adults who have assistance to die do so having met clear pre-determined criteria and have explored all of their alternatives.
Assisted suicide: enables someone who is not dying to choose death over life.
Voluntary euthanasia: where a doctor administers life-ending medication. Under the Assisted Dying Bill the, person choosing assistance to die would take the final action to end their life by taking a prescribed life-ending medication.
Int J Eat Disord. 2015 Nov;48(7):860-5. doi: 10.1002/eat.22377. Epub 2014 Dec 26. Follow-up mortality study of compulsorily treated patients with anorexia nervosa. Ward A1, Ramsay R2, Russell G3, Treasure J3.
Angela Guarda, MD, Director of the Eating Disorders Program at The Johns Hopkins Hospital’s testimony before the Maryland Senate, representing the Maryland Psychiatric Society regarding an Assisted Suicide bill (Maryland Senate bill 311 https://legiscan.com/MD/bill/SB311/2019 )
from 03:37-3:40 in recording below:
Good morning. Thank you for the opportunity to testify today. My name is Dr. Angela Guarda. I am a board-certified psychiatrist and the director of the Johns Hopkins Eating Disorders Program. I treat people with anorexia nervosa, the most lethal psychiatric condition. Nearly every case can improve with expert care and many extremely ill patients make full recovery. Anorexia is challenging to treat because persons with this disorder are ambivalent towards and often avoid the treatment they most need: nutrition.
I had two recent cases “change their mind” and contact me from hospice where they were certified as terminally ill by their physician. Both improved dramatically with appropriate treatment and left hospital hopeful for their future. Under this bill they could be dead. Recovery feels out of reach to many with anorexia, to their exhausted family and to their doctor. And — these patients are often treated by general practitioners and avoid psychiatrists. Most doctors, — psychiatrists included, can recognize anorexia but have no training to treat it. Faced with a patient in intensive care who weighs 50 pounds is in kidney failure with unstable vital signs, all resulting from their anorexia, the attending physician may judge the patient terminal because they are unaware of, and don’t know, how to get her the treatment she needs — especially when she refuses it. And the starved patient could be influenced to view “aid in dying” as the best way out of an intolerable situation, or believe her family would be better off without her emotionally and financially.
This is a very expensive illness to treat. Patients with anorexia appear rational in all ways but one: they lack the capacity to accept the care they most need. Yet they meet the definition of capacity in this bill. Instilling hope is crucial for a positive therapeutic stance. How as a physician do I hold this view when I do not know which, if any of my patients are incurable? I oppose this bill because there’s too much room for error. It risks endangering the most vulnerable and the one in five Americans who suffer from a treatable mental condition.