F.E.A.S.T. – by parents, for parents
Some of you may be shocked by the concept of euthanasia for people with eating disorders — we at Kartini Clinic certainly are. The concept of ‘assisted dying’ has recently been a hot topic, along with the ethics of ‘forced feeding’. Below is the position statement of the FEAST organization, a parent-driven support network for those who have loved ones suffering from eating disorders. They are powerful and vocal in the eating disorder community and they have taken on this issue headlong. Kartini Clinic supports their stance and with their permission are reproducing it here as a guest blog. – JOT
F.E.A.S.T. POSITION STATEMENT
July 8, 2019
EUTHANASIA AND EATING DISORDERS
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. 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 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. We extend our deepest condolences to Noa Pothoven’s family and all those affected by her loss.
Treatable Disorders
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. In the words of one parent in our community: “If there is breath, there is hope.”
F.E.A.S.T. holds that hope for all who can be reached and supported, and their families.
New Prognosis Data
In the past, pessimism about the prognosis of eating disorders after the first few years of treatment was assumed. 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
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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-occuring 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.
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.
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, 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.”
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, at all stages, the hope of recovery
· 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.
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.”
F.E.A.S.T. Board of Directors & Advisory Panel
The global support and education community of and for parents and carers of those with eating disorders.
