A post-Schiavo world

Product placement and packaging — these are the first tasks of a freelance author who has a story to write. Who will publish this article? What pitch will win over the editor? An experienced author knows the interests and quirks of the publications to whom he markets his work. In addition to the question of content — no poultry breeding articles for Car & Driver — an author must be conversant with the style sense and audience of an outlet. Do they like it hip or heavy? AP or Times of London style book? The definitive New Yorker treatment or a People magazine popular summary?

A recent article in the New York Times magazine entitled “A Drug that Wakes the Near Dead” speaks to the freelancer’s task — and its limitations. Jeneen Interlandi has done an extraordinary job. Her style is light but it conveys medical and scientific concepts clearly. The portraits she paints of the characters in her story are wonderfully done — real people, facing real problems — neither stick figures nor flat archetypes.

Yet her article on the struggles of families caring for those who have passed “beyond a vegetative state, to a hazy realm known as minimal consciousness” following traumatic brain injuries bears the heavy hand of a New York Times magazine story. While the material and emotional dimensions of her characters are portrayed in detail, the religion angle is entirely absent.

That’s not quite correct. In the 4500+ word article there is one line that touches upon the faith and moral issues at play. “It’s an instinct reinforced by religious edicts that forbid the withholding of basic sustenance but allow, for example, unplugging artificial respirators.”

That’s it. The editorial hand, I am making an assumption here, that guided this work appears not to be aware that we live in a post-Terry Schiavo world. I am not dismissing the story as bad. But it is incomplete — and given its excellence on one level, it is a disappointment to see it fall flat here.

The article recounts the experiences of Chris Cox, and his parents, Wayne and Judy. Chris suffered a near fatal drug overdose that left him in a persistent vegetative state that his doctors believed would quickly lead to his death. However, he survived and has progressed to a state of minimal consciousness. The story hook that moves this beyond the human interest level is the medical news that some patients with this condition have been brought out of the twilight.

This paragraph provides the pivot of the story.

Convinced that the son they know and love is still “in there,” Chris’s parents have spent the past three years searching for a way to bring him back out. So far, their best hope has come from an unlikely source: Ambien. A growing body of case reports suggests that the popular sleep aid can have a profound — and paradoxical — effect on patients like Chris. Rather than put them to sleep, both Ambien and its generic twin, zolpidem, appear to awaken at least some of them. The early reports were so pronounced that until recently, doctors had a hard time believing them. Only now, more than a decade after the initial discovery, are they taking a closer look.

The article recounts the partial medical breakthroughs taking place — it works for some, but not others — which neuroscientists are seeking to explain. The article then moves into the realm of medical ethics.

“Once a patient progresses to minimal consciousness, we can’t predict what’s going to happen,” says Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College and author of a coming book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.” Some patients have recovered full consciousness, but many more remain stuck in limbo. The only way to know the outcome is to give the patient time.

But offering time is a complex proposition. “Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be,” says Dr. Soojin Park, a neurointensivist at the University of Pennsylvania Hospital, and an investigator on the zolpidem trial. “And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.” At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. It’s an instinct reinforced by religious edicts that forbid the withholding of basic sustenance but allow, for example, unplugging artificial respirators.

And here that conversation stops and we return to the experiences and hopes of the Cox family — an editorial decision that diminishes the power of this story. In some ways this story serves as a bookend to a 2010 article my colleague Mollie Ziegler Hemingway discussed in GetReligion.

The Chicago Tribune story began:

If ever Carol Gaetjens becomes unconscious with no hope of awakening, even if she could live for years in that state, she says she wants her loved ones to discontinue all forms of artificial life support.

But now there’s a catch for this churchgoing Catholic woman. U.S. bishops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few circumstances.

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia. …

Gaetjens, 65, said she did not know of the bishops’ position until recently and finds it difficult to accept.

“It seems very authoritarian,” said the Evanston resident. “I believe people’s autonomy to make decisions about their own health care should be respected.”

Mollie wrote that the Tribune story went on to explain this directive from the bishops and how it would affect Catholic hospitals. But she noted there was “something rather significant that was missing from this story,” which was that “nowhere in the Tribune piece is the news from last week mentioned, much less any indication that people diagnosed as being in persistent vegetative states might be aware, intentional and desiring communication. That omission really hurts the article.”

I am not setting this up to say that while the Tribune story lacked science, the Times story lacked religion. The issue is one of balance. For an audience that believes there is nothing more to the human experience than the material, the Times story works. For those who believes that men and women are physical and spiritual beings, the Times story is incomplete.

A slew of religion questions were neither asked nor answered in this article. The problem of pain and suffering. The meaning of a life lived in a vegetative state. Defining human dignity … the questions that animated the Terry Schiavo debate in 2005. Even if a discussion of morality, which is derived from philosophical first principles, is off limits in a New York Times magazine story, there should have been a discussion of decency.

Decency is a matter of custom and general acceptance, and its standards change to meet the realities of the age in which we live. The advances in medical science of the past generation can keep alive in a twilight consciousness some who would have died from their conditions. This article asks what is happening to these people. But it does not ask whether it is moral or decent.

Illustrations courtesy of Shutterstock.

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  • Will

    I assume they mean “more definite” and are trying to be highfalutin. Something is either definitive or it is not.

  • Raymond Takashi Swenson

    Cutting edge research with MRIs and other brain scans have revealed that even “vegetative” people can have brains experiencing real consciousness, but trapped without the ability to communicate. Technology and computers offer a path toward eventually giving such people the ability to communicate with us. How cruel to take the position that, if someone cannot fight back, we have the right to end her life.

  • Martha

    “The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia”

    So is the news story telling us that current medical practice in the United States is to withhold nourishment, for the purpose of bringing about death, from people who have suffered strokes and cannot eat but are otherwise unimpaired (apart from any impairment that the stroke caused)? It’s not just those in a vegetative state with no brain activity?

    This is extremely important news, if it’s correct. Is it? It seems to be glossed over in the story – that one sentence, as if the mean ol’ Vatican is forcing stroke victims and/or their families to keep them alive against medical advice.

  • sari

    This subject is difficult to discuss from any angle, partly because outcome cannot be predicted with any accuracy and partly because most people, religious or not, are at their least rational when dealing with unexpected trauma. I appreciated the absence of religion in the NYT story; it would have been relevant only if the Coxs’ actions were predicated on their religious beliefs, which does not seem to be the case.

    I’m not clear how the NYT reporter should or could have assessed the morality or decency of any given position. I lost my eldest to severe brain trauma a few months before Terry Schiavo died. The Schiavo press coverage was horrible, and all I could think about was how their religion guided them in a different direction and how her parents and husband seemed more concerned about themselves than about her. They were in denial and he wanted to get on with his life, but couldn’t while she “lived”. But what I consider indecent–prolonging a dead person’s “life”, others would consider moral and decent. No consensus exists for a situation that must be experienced to be understood.

  • Julia

    sari said:

    No consensus exists for a situation that must be experienced to be understood.

    Christopher Hitchens’ current article in Vanity Fair addresses the feelings and perceptions of someone who likely has a mortal illness.

    TMatt: This is a journalism issue because he is reporting & describing facts first hand as well as giving his own opinions in a way that a detached outside reporter could not – since we cannot read each other’s interior thoughts and feelings or perceptions of pain.

    Because his primary disease is esophageal cancer, he has had bouts of not being able to speak (I don’t know if that is the case now). He reveals at the end of the article that he needs injections in order to type. What happens when that no longer works. And, if he can’t dictate vocally, he fears being stuck with no means of communication while still conscious.

    At first I thought this article was narcissistically morbid, but he is really doing us a favor – revealing what’s going on in the mind of someone who might die soon. He’s assessing the value of treatments that by themselves almost kill a person. He analyzes the ends of other atheist writers. He discusses how it’s impossible to accurately tell a patient what cancer treatments are going to be like.

    I’d like to see an in-depth article consisting of a number of interviews with people such as Hitchens,including how belief or non-belief in God affects their thinking. We’re making decisions affecting such people when they can no longer speak for themselves and we have no idea what might be going on in their heads. As Hitchens reveals, a healthy person’s views can change greatly when that person is actually in extremis or close to it.


  • Bern

    Thanks for a thoughtful post: I too thought about the Schiavo case while reading the NYT article–but I also thought about the book Awakenings by Oliver Sacks. whether mentioning either would be discursive or not is subject to the readers’ interpretation I think–and there’s nothing wrong with that.

    Sari, my condolences on the loss of your son.

  • LaurelhurstLiberal

    I’m not sure what point you’re making by invoking Terry Schiavo. There is no scientific evidence that she had a locked-in syndrome, only a battle between husband and relatives about her medical care. It’s also notable for the involvement of many politicians who got mixed up in the Schiavo case, some of them making very irresponsible statements. In the end, the courts let her husband have the final say.

    So I’m not sure what it means to say we live in a “Post-Schiavo” world now. You need to explain this.