By Judy Krasna, F.E.A.S.T. Executive Director
I’m going to begin this post with an apology, because I know that it’s a terrifying topic and it may be distressing to read. It’s hard for me to write; however, I believe that informed parents are more powerful, even when the information is difficult to handle.
A few months ago, Dr. Jennifer Gaudiani et al published an article about “terminal anorexia nervosa” in the Journal of Eating Disorders that shook the professional eating disorders community. In this article, the authors set forth clinical characteristics of “terminal anorexia nervosa” and propose not only palliative care for these patients, but also medical aid in dying. These are patients who according to the authors would not medically survive beyond 6 months; and in their words, the goal of this type of medical care is to “ameliorate suffering and honor the life lived.” I suggest reading the article to fully grasp the authors’ position.
This only applies to a small cohort and is certainly not widely applicable to those with anorexia. I can understand where the authors are coming from based on the case studies, even if I don’t agree with them; I believe that the intention is to help people who are in immense pain.
And, with that, I think that the label of “terminal anorexia nervosa” is creating a monster that has the potential to do tremendous harm. I have already seen with my own eyes how some providers are taking “terminal anorexia nervosa” in terrifying directions. Terrifying.
I am grateful that a group of clinicians led by Dr. Angela Guarda, whom I had the privilege to meet with at Johns Hopkins last month while I was visiting the US, came out with their own article in the Journal of Eating Disorders stating that “terminal anorexia nervosa” is a dangerous term and affirming my thoughts on this issue. “Anorexia nervosa is a treatable psychiatric condition for which recovery may be uncertain. We are greatly concerned however regarding implications of applying the label “terminal” to anorexia nervosa and the risk it will lead to unjustified deaths in individuals whose mental illness impairs their capacity to make a reasoned treatment decision.”
Eating disorders are not cancer or heart disease. Risk factors for mortality are uncertain, and it’s hard to know which medical complications are reversible with nutritional restoration. I think it’s important to acknowledge that.
I have found that there is very little black and white when it comes to the complex issues that we face as parents of people with eating disorders. Those who have had to force their children into treatment against their will, either through legal means or through using leverage, have done so with a tremendous weight upon their heart and their conscience. Ultimately, our most critical job as parents is to protect the lives of our children. To most of us, using force to do this is totally foreign, and I can only imagine that it feels terrible, but we do what we need to do. When we get that panicky feeling that the eating disorder is severely compromising our child’s health, we opt for treatment, even if it hasn’t worked before. We do this again and again, because what choice do we have? We are hoping, perhaps against all odds, that treatment will take this time, and that the needle of our child’s recovery will move. And I can understand that from the outside, even to a clinician, what we are doing seems futile. If treatment has failed in the past, why force our loved one into it again?
I have seen with my own eyes that there are people out there living their best lives today who may have qualified for the diagnosis of “terminal anorexia nervosa” during certain points of their illness, and who recovered after decades of suffering with an eating disorder. Many of them can’t pinpoint exactly what changed, what made treatment suddenly effective, what led to the motivation to recover, what moved them away from death and toward life. They are not only alive, but they are living, which is something they would have considered impossible; and yet, here they are.
And that’s why we keep trying, that’s why we force our kids to get help for their eating disorder even when doing so in the past hasn’t produced results. Because where there’s life, there’s hope.
I’m not naïve. I lost my own daughter to an eating disorder. I know that not everyone will recover. I know that the mortality rates remain too high, and the recovery rates remain too low. I know that people with eating disorders and their families suffer. But I can’t bear to read articles about helping people with an eating disorder die when there isn’t enough being done to help them live.
As parents, we see that our highly intelligent children lack insight into their illness and are therefore incapable of making decisions about their own medical care. We see how the egosyntonic nature of eating disorders robs our children of their motivation to recover. We understand that this is part and parcel of an eating disorder. So how is it possible that clinicians who support “terminal anorexia nervosa” are overlooking this in favor of deferring to the wishes of someone whose decision-making capacity about something as enormous as ending their own life is likely impaired? I honestly don’t get it.
To me, hope in my daughter’s recovery, or at the very least in her ability to lead a functional and productive life, kept me going during the most difficult of times. Robbing parents of that hope by smacking a label of “terminal anorexia nervosa” on their child seems incredibly cruel to me, no matter how old they are or how long they have been ill. As parents, we hold hope for our children, who are incapable of doing so for themselves. When you take away our hope, you take away everything, and that negatively impacts our children.
Given my own lived experience, I can appreciate that there may be grey areas when it comes to “severe and enduring eating disorders”, another term that I have serious issues with. But what’s absolutely clear to me is that the ramifications of “terminal anorexia nervosa” are positively terrifying for both parents and for the eating disorder community at large. We cannot let it stand unchallenged.
If anyone in the clinical community wants to have a conversation with me on this subject, I’m here.