The first time I met the small girl in the stroller, I knew she was going to die. She was just 2 at the time, and she had been born with a rare and terminal unknown disease. There was no hope for treatment.
At the time, there was also no hope to help end her suffering.
In the clinic, she sat slumped to one side of her stroller, her eyes floating aimlessly unable to focus. She’d already had multiple seizures by 9 a.m. despite a cocktail of experimental drugs.
The seizures had left her unable to eat, walk, talk or engage in any meaningful way, and she was almost assuredly in pain after many surgical interventions. She was now decompensating quickly — yet still not quickly enough to end her suffering immediately.
The girl was one of the handful of kids from my work in clinical research who showed me the many shades of gray in medical assistance for terminal illnesses.
There were no laws in her case that would have allowed medical professionals to end her life with medical aid. Instead, she was forced to live out her remaining months in increasing agony while we all watched helplessly.
For her parents, watching their child die a slow death also came with immense guilt for wishing their child would die sooner rather than later. After all, if society says it isn’t legal to end the suffering early, what kind of monster must you be to wish for your child to die?
The girl has long since passed away, but I think of her and her family often. Much to my disappointment, not much would be different in her case today.
Only 10 states — including Colorado — and Washington, D.C., have death with dignity laws permitting a terminal patient the right to die. Not one of them extends the right to terminally ill patients under 18. Most expert panels will also automatically exclude patients in certain categories of illness, such as those with mental health diagnoses, out of admittedly reasonable ethical concerns.
Yet it would seem that as an area ripe for ethical missteps, we’ve simply taken to avoiding the tough cases altogether — a move that easily comes at the expense of patients unwittingly stuck in the gray areas.
It’s from this experience — as well as brief work on an inpatient cardiac anorexia nervosa study — that I was stunned and grateful to read about Denver Dr. Jennifer Gaudiani’s recent paper on the right to aid terminally ill anorexia nervosa patients.
Anorexia nervosa falls under mental health diagnoses, meaning many experts have avoided the topic professionally and politically for years fearing blowback. It’s for this reason that it’s all the more impressive Gaudiani has taken a public and professional stance, arguing that in very severe cases of AN, it ravages the body so extensively that it should be defined by all the same stages of terminal illness, and, ultimately, be considered equally valid for medically assisted dying in very specific cases.
Challenging such an ethical gray space is incredibly forward-thinking given we haven’t even come to accept death with dignity laws as a nation yet. Still, having seen terminal illnesses first hand, it’s hard to imagine a situation where an expert like Gaudiani isn’t acting in the best interest of her patients — and judgments suggesting a physician is acting out of nefarious or ill-considered intent often come across as being far more concerned about easing one’s own fears or sense of helplessness about people dying than about offering compassion to those who need it.
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The reality is that as humans we will all eventually die, and for those facing terminal illness there is much progress to be made in ensuring compassionate transitions. Especially in light of Gaudiani’s bold efforts, it would seem critical to adopt death with dignity laws more widely, although in a new way.
It is clearly too difficult to define qualifying cases by strokes of broad inclusion or exclusion such as ages or illness, and rather considerations should be made with a far more discerning case-by-case approach.
For the sake of people in the gray spaces, I hope one day we might come to recognize the right to die on one’s own terms in terminal illness as a fundamental human right. Although it may not be the happy ending we want, for some, it just might be the peaceful ending they need.
Trish Zornio is a scientist, lecturer and writer who has worked at some of the nation’s top universities and hospitals. She’s an avid rock climber and was a 2020 candidate for the U.S. Senate in Colorado.
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