Should You Kill Your Disabled Child?

I've just read a remarkable book about this question: Rescuing Jeffrey, by his father, Richard Galli. I got to the book via "Calling It Quits: When Patients or Proxies Request to Withdraw or Withhold Life-Sustaining Treatment After Spinal Cord Injury," an article assigned to Harvard Medical School students for this week's class on end of life care in the required course on "Medical Ethics and Professionalism."

On July 4, 1998, Jeffrey Galli, 17 at the time, dove into the shallow end of a swimming pool and fractured his neck, injuring his spinal cord in a way that left him quadriplegic and unable to breathe without ventilator support. Richard saved his life by pulling him out of the pool and breathing through his nose. But when Jeffrey got to the Hasbro Children's Hospital in Providence, Rhode Island, and the extent of his injury became clear, Richard and his wife Toby considered whether the right thing to do would be to withdraw treatment and let Jeffrey die.

Galli renders the anguished flow of his thoughts and feelings in admirably spare prose. Not surprisingly for a 17 year old, Jeffrey had given no guidance about he would want to have done in a situation like the calamity he experienced. In his initial state of unconsciousness, and the next few days of impaired awareness, his parents had to make decisions for him. Galli initially felt that Jeffrey - a very physical boy who was not drawn to reading or other forms of "living in his mind" - would not be able to tolerate the helplessness and immobility of quadriplegia. But he recognized that he wasn't a reliable decision-maker. Perhaps he was the one who couldn't tolerate Jeffrey's condition. Galli conveys the way thinking about Jeffrey mixed with projection onto Jeffrey brilliantly. At one point he imagines pulling the plug on Jeffrey and then committing suicide himself!

When Jeffrey started to regain consciousness and began to fathom what had happened, his first reaction was "I want to die." But over the course of the ten days Galli's narrative describes Jeffrey first oscillates between wanting to die and wanting to live, gradually settling on the will to survive.

Galli provides a service to clear thinking by using harsh words to bring out harsh facts. For him the question isn't whether to "withdraw medical treatment from Jeffrey" but whether to "kill Jeffrey." In part, making that choice would have been an act of love - sparing his son from the suffering that he expected would be Jeffrey's fate. But in part the choice would have reflected his own suffering at the loss of a son with mobility. For that reason. "killing" wfelt to him like the right word.

The crucial help Galli received was from a physician whose name he does not give and who was not part of Jeffrey's ongoing treatment. The physician conveyed that the life vs. death decision didn't have to be made now. If Jeffrey decided in the future that life in a wheelchair with no use of arms or legs and no ability to breath on his own was not worth living, he could have the ventilator withdrawn. Galli concluded that letting the treatment proceed was not committing his son to a life of unwanted suffering.

The book is painful to read, but once I picked it up I couldn't put it down.

(Jeffrey completed high school and then college. For an article about him at the University of Rhode Island, see here. For a video of Jeffrey and his younger sister Sarah in 2012, 14 years after the accident, see here. And for a post I wrote about an adult patient with quadriplegia who elected to have his ventilator turned off, see here.)

The ethics of writing about children with mental illness

I was recently asked about the ethics of writing about children and adolescents with mental illness. I've edited the actual question to preserve privacy:

I've been asked to consider writing a book about a parent and a mentally ill child. I'm convinced that the story needs to be told; but I'm not sure how to do it ethically. We don't want to re-traumatize the child, who is unable to give informed consent to interviews or to decide about making the story public, and probably won't be able to give informed consent even after reaching the age of majority.

We want to be responsible -- to respect the child's privacy and to do no harm. But we want to validate the experiences of other parents who are living through this with their children; to improve public understanding of the condition; and to advocate for the kids and families who are struggling. They're suffering in silence right now.

Because of the nature of the disorder and the behaviors that children with the condition display, the "commercial" literature that's available pushes the boundaries of good journalism. So much is changed to protect the children's privacy that it damages the credibility of the writing. But it's impossible to guarantee privacy if we write honestly. If we describe even one event exactly as it happened, SOMEBODY is going to recognize the child.

What an important question this is! It poses a fundamental "good vs good" conflict: the value that the story might have for other parents and folks who make policy relevant to the child's condition vs the child's right to privacy and protection as a minor.

Apart from how individuals will weigh these values, cultures themselves vary. Many years ago I joined a psychiatrist in India at a session in a clinic serving the poor. I knew him to be a kind and considerate man of great personal and professional integrity. He asked patients who spoke English to "talk with the doctor who is visiting with me from the United States." After an extended discussion with a couple I asked my host if it would be acceptable for me to ask for their permission to take a photograph of them. To my astonishment, my host responded - "just go ahead - you don't need to ask permission." (I wasn't comfortable doing this and put aside the photograph idea.) Subsequently I experienced the same cultural perspective in settings where I was the only Caucasian - people sometimes took photographs of me as an interesting phenomenon.

My reaction to the question is unambiguous. For me, the child's interests come first. I advised writing a well-disguised version of the story that met my rule of thumb - the child's neighbors, teachers, and friends shouldn't recognize who the story is about, and the child, now or at an older age should feel respected by the way she or he is written about. That level of disguise may diminish the value of the story for other parents or policy makers, but in my view that's the correct trade off among values.


On World AIDS Day in 2005 I was in Madurai, India. A man disguised as a giant condom was circulating in the crowd. When I pointed my camera at him he indicated that I should stand next to him and be part of the photo. Perhaps he felt that I should collaborate with him and not objectify him. FYI, here's the photo: