Finn’s Final Request

When Finn was six years old he was diagnosed with juvenile leukodystrophy, also known as Juvenile Alexander Disease. Alexander Disease is a rare disorder of the nervous system that involves the destruction of the body’s myelin, a fatty coating that insulates nerve fibers. As the protective myelin coating deteriorates, nervous system functions become impaired. This can result in significant nerve pain all over the body, excessive vomiting, difficulty swallowing, poor coordination, difficulty talking, and a general loss of motor control. There is no cure for this condition, and children diagnosed with this disorder between the ages of four and ten are expected to live for approximately five to ten years.

Finn recently turned sixteen years old, and his symptoms have been rapidly intensifying over the past two years. He has difficulty speaking and swallowing, requiring a feeding tube for nutrition and hydration. He has recently lost the ability to use his hands, can no longer move his arms, and he hasn’t been able to walk for several years. Finn also reports being in a significant amount of pain most of the time, despite his doctor’s best attempts to manage his pain. His doctors expect that he will die within the next six months.

Given his extremely limited mobility, Finn spends most of his days reading and browsing the internet using eye-tracking software. He can no longer attend school and spends most of his time in the hospital. His parents know that he has thoroughly researched his condition, and they’ve had open conversations with him about his deterioration and prognosis. As Finn has gotten older, his parents have given him more room to make his own medical decisions by respecting his assent or dissent to certain options, though legally they are still the ones who must consent on his behalf.

Nine months ago, Finn’s closest companion and friend, his golden retriever Daisy, had to be euthanized due to cancer. Finn was devastated to lose Daisy, but at the time he agreed that it was the right decision to end her suffering. Now facing his own mortality and suffering, Finn asks his parents and physician, Dr. Kay, if he can be “put to sleep” the same way that Daisy was.

Struggling to speak, he slowly explains that he’s in so much pain, likely more pain than Daisy was in, and he knows he can’t be cured. He tells them that he’s come to terms with his death, and he “doesn’t want to live in the pain anymore. It’s just going to get worse.” Dr. Kay responds that it would be inappropriate for her to kill a patient, even a patient who is terminally ill. She explains that the most she could do would be to withhold hydration and nutrition in order to hasten his death, but acknowledges that this would likely result in even more pain and suffering at the end. With effort, Finn responds, “but if it was okay to put Daisy to sleep, why is it not okay for me?” Taken aback by his request and struggling with what to say next, Finn’s parents and Dr. Kay call in the ethics team for guidance.