Palliative Care’s Ultimate Loss

Whether it is because media outlets are finding more click bait worthy stories or whether it is because we have finally passed a tipping point, we are finding more stories seemingly on a weekly basis on the attempted intersection between anorexia nervosa and palliative care.

The Shadows of our Demise. The Harbingers of Hopelessness.

In the Netherlands, a 29 year old is allowed to take her own life after suffering from mental health issues.  Her doctors believe they are out of options and have given up hope.

A 34 year old young woman in the Netherlands is diagnosed with an eating disorder, recurrent depression, autism and mild learning difficulties. She said she tried countless therapies but struggled her entire life. And then in 2022, a counselor told her that euthanasia for psychiatric reasons was legal. She made it her goal ever since, admitting that she always thought about death.

In the UK, recently a 19 year old young lady suffering from anorexia died from eating disorders after waiting for treatment. The UK’s overburdened mental health system could not admit her for treatment.

In the United States, a very small sect of treatment providers is embracing medical aid in dying for persons suffering from anorexia. Palliative care for persons with eating disorders has entered our lexicon. This despite the fact that we have no generally accepted standard of care for treating eating disorders and limited knowledge of evolving medical interventions to treat this brain-based illness. The ignorance in the medical and mental health industries has grown so much that some treatment professionals have written, “Terminal Anorexia” (don’t get me started) is the same as Severe and Enduring Anorexia Nervosa.

I can’t help but wonder … for those medical and mental health professionals who support, if not actively engage in physician assisted suicide for those who suffer from anorexia, how many have had a beloved child die because of this insidious illness? Or is it merely an academic exercise impacting persons not of their blood line? How many have felt that anguish that cannot be adequately described and yet, still tears apart your heart and soul to a depth that cannot be fathomed unless experienced? How many of those medical or mental health professionals who have looked into the eyes of a patient suffering from eating disorders and who said, “I can do no more. There is no hope.” have had a child cruelly ripped from life?

Any? Probably not. That type of pain forever changes you.

So, for those medical and mental health practitioners who support physician assisted suicide for anorexia nervosa, let me attempt to describe for you, [as much as my limited abilities permit] the pain, the anguish so deep, so permanent, that it is almost beyond comprehension.

Think of your beloved daughter. The memories. The memories of going on Indian Princess campouts in Southern Oklahoma. And as you walk back to your tents late at night, you are holding her in your arms, she so young and precious, and then you look up and see the blackest of night skies, bright stars so numerous as to be uncountable … you see so clearly, the Hale-Bopp comet. You breathe in your daughter. You feel her so close to you. Her head on your chest, hearing your heartbeat. You see her innocent eyes closing, a blissful smile on her face.

You remember the joy on her face as that very afternoon, she caught her first fish! And she is jumping with elation.

You remember so distinctly the day she was born. And you being filled with an incredible love that captures you.

You think of those many nights helping with homework.

You think of those nights when, because you are a dad and she is a blossoming young lady, she wants nothing to do with you!

Then, you think of those many days and nights when she called you “twins.”

You think of that day when you took her to the circus. How she clapped with joy when the elephants marched in.  And her howls of glee when a circus clown dragged you to the center ring and threw plates with you while thousands looked on.

You remember taking her to Del Frisco’s Steakhouse for her 10th birthday and after the waiter announced all the specials that night, she looks him in the eyes and says… “I believe I will have the lobster.” You laugh seeing the waiter’s incredulous face.  And then smile watching her take each piece of lobster and delicately dip it in butter and eat it with a smile on her face.

You remember taking her to her first opera when she was 7 years old. As intermission happens, she looks at you and sweetly asks, “Daddy, will there by more music after halftime?”

But you also remember years of struggle, pain and heartache.

And then, one dark night. One dark, unholy night, eating disorders claims its next victim. As you are holding her hand, the attending doctor looks up at you and softly says, “She’s gone.”

In your numbness, shock and an anguish that cannot be measured, you realize that you will never be the same. The man, the parent, the daddy you were, is forever changed. Whoever you thought you were … is gone.

After awhile, you come to realize that you will never see the joy on her face when she tells you, “Daddy! I am engaged!” You will never walk her down the aisle. You will never have that first Daddy-Daughter dance at her wedding reception. You will never hold for the first time your grandchild from your beloved daughter.

You will never hold nor hug your daughter ever again. And you will never, ever, ever, ever hear again, your daughter’s voice saying, “Daddy, I love you.”

It is exactly that.  That is what physician assisted suicide for anorexia rips away. That is the dagger to the heart. That precious life. Those precious words. Gone forever.

“Daddy … I love you.”

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