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.)

"By Blood" by Ellen Ullman

I've just finished reading a remarkable novel: By Blood by Ellen Ullman.

I'd read in a review that the story is told by a disgraced professor who eavesdrops on a psychotherapy occurring in the adjacent office. How could I, after years of psychiatric practice, resist a story like that!

The professor/narrator, whose name we never learn, and whose sordid doings at the university he's been forced to leave we only get hints about, is immediately obsessed with the young lesbian, adopted patient and her German born therapist. To the narrator, being adopted means being free from blood ties to one's past. Since his ancestry is replete with suicides, the image of escape is appealing. But once the person he refers to as his "dear patient" begins to search for her birth mother, he becomes a detective, and ferrets out clues that he passes on to her, in the guise of the agency that handled her adoption. The complex story leads from San Francisco to Bergen-Belsen and Israel. I won't spoil the reading experience by giving too many details.

For me Ullman's novel created an experience that was common in clinical practice and, more broadly, life: a feeling that behind a surface that initially seems bland there's a fascinating, illuminating story to be found.

When Elvin Semrad, the training director in my residency was asked whether he didn't sometimes get bored with his patients, he said something like this:

No human being is boring. If we feel bored, one of two things is happening - either the patient is avoiding what's really bothering him, and the words are a cover, or the patient is talking about an issue that we haven't resolved for our self, and boredom is our defense.

Whenever I felt bored in clinical practice I applied Dr. Semrad's teaching - it always gave good guidance.

By Blood is about curiosity, and I'll bet that if you start it you'll find that it evokes such strong curiosity you won't be able to put it down. "Curiosity" is title of a 1999 essay in the Annals of Internal Medicine by Dr. Faith Fitzgerald that I admire and have often used in teaching. Dr. Fitzgerald was offended when patients were described as "uninteresting," and challenged the resident leading the team she was making rounds with to choose the least interesting patient on the ward:

He chose an old woman admitted out of compassion because she had been evicted from her apartment and had nowhere else to go. She had no real medical history but was simply suffering from the depredations of antiquity and abandonment. I led the protesting group of house staff to her bedside. She was monosyllabic in her responses and gave a history of no substantive content. Nothing, it seemed, had ever really happened to her. She had lived a singularly unexciting life as a hotel maid. She could not even (or would not) tell stories of famous people caught in her hotel in awkward situations. I was getting desperate; it did seem that this woman was truly uninteresting. Finally, I asked her how long she had lived in San Francisco.

“Years and years,” she said.

Was she here for the earthquake?

No, she came after.

Where did she come from?

Ireland.

When did she come?

1912.

Had she ever been to a hospital before?

Once.

How did that happen?

Well, she had broken her arm.

How had she broken her arm?

A trunk fell on it.

A trunk?

Yes.

What kind of trunk?

A steamer trunk.

How did that happen?

The boat lurched.

The boat?

The boat that was carrying her to America.

Why did the boat lurch?

It hit the iceberg.

Oh! What was the name of the boat?

The Titanic.

She had been a steerage passenger on the Titanic when it hit the iceberg. She was injured, made it to the lifeboats, and was taken to a clinic on landing, where her broken arm was set. She now was no longer boring and immediately became an object of immense interest to the local newspapers and television stations—and the house staff.

I'm writing about By Blood in an ethics blog because I believe the right kind of curiosity about our fellow human beings is the royal road to good ethics. Fancy words used in ethics teaching - "autonomy," "informed consent," "beneficence" and more - provide useful frameworks, but they don't provide the vivid human truth that empathic curiosity points us to.

(An excellent interview with the author can be found here. And an excellent review from the New Republic is 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:
 

Writing about Patients (and research subjects)

Last week I read a fascinating book by Charles Bosk - "What Would You Do? Juggling Bioethics and Ethnography."

Bosk's first book - "Forgive and Remember: managing medical failure" - a brilliant field study of surgical training, made him famous when the first edition was published in 1979. I can't evaluate his skills as an ethnographic field worker, but he's a terrific writer.

In a chapter on "Irony, Ethnography, and Informed Consent," Bosk reports the intense distress a genetic counselor experienced on seeing how he'd written about her and reflects on the nature of informed consent in ethnographic research. The ethnographer is not doing an experiment for which the risks and benefits can (and should) be described clearly to those who are being asked to participate. But he describes how ethnography characteristically seeks to "debunk" (his word) conventional social constructions, and he comments that ethnographers often write with irony. (That's part of what makes his writing so engaging.) The chapter reflects on whether the risk of reactions like that of the genetic counselor can be conveyed to folks in the environment the ethnographer hopes to study.

This is a tough question. How many potential "subjects" would agree to the study if the would-be-researcher came to the group and said: "I would like to observe you to understand how you function. I will write up my observations and may well debunk your own views of yourselves and what you are doing. I will write with irony, and you may feel misunderstood and condescended to."

Not many. I'm a great fan of ethnographic literature and have learned a lot from it. But if an ethnographer wanted to study me in action, I'd (a) agree if I had "must approve" rights to review any and all proposed public presentations that could possibly be connected to me or else (b) I would run for my life.

Over the years I've often used experience with patients in writings and lectures. I've applied this rule of thumb to the way I developed the material: The patient's closest friends shouldn't recognize who the story is about, and the patient should feel respected by the way he is talked or written about.

The most interesting experiences I've had in writing about patients involve communicating with other physicians. The group I practiced with used an electronic medical record. If I wanted to write to another physician involved in the patient's care, I often composed the note collaboratively with my patient. In one situation, after a lot of nudging and nagging on my part, a patient of mine finally acknowledged that alcohol was a big problem for him. He agreed that his primary care physician ought to be told. We sat in front of the monitor together. He balked when I wrote "X now recognizes that he suffers from alcoholism." We negotiated and agreed to substitute "X now recognizes that alcohol is a problem for him." The discussion itself was part of the work that goes into the first of the twelve AA steps - acknowledging the problem itself.

I don't know how contemporary ethnographers handle informed consent. Quite apart from what an IRB might say, I would not feel justified in writing about people in any way that could be connected to them without their "sign-off" on what I'd written. That was the agreement for the field work that went into the two health policy books I've written with colleagues. And in the grant proposals for funding the studies we stated that we thought of those we observed and spoke with in the field as "colleagues," not "subjects."

Bosk sees the issue of informed consent in utilitarian terms. Respect for those who will be observed and written about calls for robust informed consent, with full explication of the potential risks of the ethnographic study. But the potential value of the study itself pushes against informing about risks in a way that is likely to squelch the study. I may have misunderstood him, but it looked to me as if he came down on different sides of this equation in different chapters.

Apart from federal regulations about human subjects research, I vote for an open process of informed consent. Discussing risks may indeed squelch promising projects, but my optimistic view is that transparency will, over time, enrich the kind of research Bosk exemplifies so well. Negotiating with those one is observing (or, for clinicians, treating) can itself be a rich source of insight. And for ethnographers, that process may lead to less determination to be "debunkers," and to a writing style that depends less on irony about the subjects to engage the reader. A writer as good as Bosk doesn't require a put-down mode to make the story he tells vivid and alive.