I sit by an open window in a classroom with carved oak walls. It’s 1985. I’m twenty-eight, in the thrall of novel ideas and the awakening smells of April in New Haven.
Inside the seminar room, a visiting professor of health care policy is diagnosing the social ills of medical practice in the United States. “We’re spending an unseemly public fortune on the extreme ends of the human lifespan,” he says, “and we’re ignoring the population in the middle.”
The argument goes like this: On the one hand, a large proportion of the Medicare budget is being wasted on the very old and the very sick in the last year of life. On the other hand, extremely premature neonates are being “salvaged"—at vanishingly low birth weights and ever younger gestational ages—at great human cost as well as public expense.
With respect to our dying elders: Were they to be offered an authentic choice, who among them, with the end in clear view, would not forego extraordinary medical intervention in favor of a timely and dignified demise? And as for the very premature babies, would they not have died anyway, if born a generation ago, or even today in most other countries?
“The hard truth about premature infants,” the professor goes on, “is that too many of them are brain damaged and severely handicapped. So the full costs of the new intensive care nurseries will only accrue as these survivors of traumatic birth grow up to be a continuing burden on their families and society.”
The gaggle of graduate students responds approvingly. A lively discussion ensues about the relative merits of cost-based versus ethical arguments against futile care.
I throw in my lot with the side arguing from the principle of “distributive justice.” I glance out the window and think about graduating from here. A shaft of late-afternoon sunlight illuminates a new sprig of ivy, mint-colored and fragile in a spring breeze, clinging to an irrefutable limestone wall.
* * *
Her water broke shortly before dawn. “I’m only twenty-eight weeks,” she said. “It’s not what we want.” She was crying.
An hour later we’re at the hospital having an ultrasound and listening to a perinatologist lay odds. “Your baby is coming soon,” the doctor says. “It’s very early, but we have a wonderful neonatal nursery here. At these dates and weight I’d say there’s an eighty-percent chance your baby will survive—Oh, and you’re going to need a good pediatrician. I might suggest Dr. Spiesel.”
We spend two nights and days bracing for the inevitable. We call our families and friends. On the second day, a special visitor arrives. It’s Dr. Raymond Duff, an avuncular neonatologist who also teaches medical sociology in my department. I know Ray. I’ve read his classic book, “Sickness and Society,” coauthored with August Hollingshead. He’s been writing about medical ethics lately.
“You may not realize this,” Ray intones, “but the two of you have a choice to make. If you don’t say anything to the doctors, your baby will go into the NICU and be put on a ventilator. It will just happen. The doctors will take over, and then they’ll do what they are trained to do. Maybe everything will turn out fine. But maybe it won’t—there’s no guarantee. Your baby could be severely handicapped. We just don’t know. The point is you do have a choice. If you want to, you can say your baby is not going into the NICU. You can just hold your baby in a rocking chair with a blanket and let nature take its course, like parents have always done.”
Ray Duff was one of the founders of the first neonatal intensive care unit in the country, at Yale-New Haven hospital. He was also a vocal advocate of “selective nontreatment” of handicapped infants. He believed that “families need to be spared the chronic sorrow of caring for infants with little or no possibility of meaningful lives.” In Dr. Duff’s view, in the case of severely handicapped infants with “little or no capacity to love or to be loved . . . choosing death sometimes [can be] viewed as an act of love.”
Years later, I would learn that a policy of selective nontreatment had been instituted at Yale-New Haven; that during the first 30 months when the policy was in effect, 43 infants died after treatment was withdrawn.
I will have many years of hindsight in which to parse Ray's advice and what we made of it, but right now there is little time to ponder. Suddenly we are in the delivery room with seven physicians and nurses. There is tense talk of “long decels.” Somebody murmers the term “anoxia.” I’m not sure what this means at first. I understand it better when one doctor says to another, “The baby is going down.”
Then our baby is born. She is intubated and whisked away. We see Angela hours later, a tiny doll in a Plexiglass box hooked up to monitors and machines like an appliance.
A kindly man with a shock of curly grey hair steps up behind Pam and me, puts his arms around our shoulders. “I’m Syd Spiesel,” he says. “I’m Angela’s doctor.” It is the first time we’ve heard anyone utter her name out loud. This tiny person has a name. And her own doctor.
“You have a beautiful daughter,” Syd says. “She’ll be in here awhile, but I think she’s going to graduate.”
During the long ordeal of Angela’s hospitalization, we come to lean on Dr. Spiesel. He is there at all hours of the night, week after week. He provides timely information and advice. He makes the decisions that are his to make, and helps us frame the choices that are ours. But most importantly, Syd is present. Syd listens to us as if he has nothing else to do. Indeed, it often seems to Pam and me that we are the focus of Syd’s medical attention.
Syd tells us that he was a scientist before he became a doctor; that he went into medicine to be with people like us at times like this. Maybe he says this to all his patients. We know nothing else of Syd’s life. Did he have a family of his own? Did they miss being with Syd when he was with us at the hospital at midnight?
Mother’s Day arrives. We celebrate at a restaurant. The hostess is handing out free long-stem roses to all the mothers. I ask for one for Pam. She feels self-conscious because it’s just the two of us. We show the startled waitress proof: a Polaroid photo of a doll-sized baby in a hospital.
Before a year passes, we visit another doctor, a specialist in pediatric neurology, who confirms our worst fears. “Your child has cerebral palsy,” he says. We wished Syd could have been the one to tell us. But we’re in another place now. Another planet.
* * *
It’s April 2008. I’m driving home from work when I hear a familiar voice on NPR. It's been twenty-three years, but I'd know the voice anywhere. It's Dr. Sydney Spiesel. He’s a medical contributor. The memories come flooding back . . .
To Syd: What a good doctor you were—for Angela and for us—during those first months of her life in New Haven. But you were only a doctor. You couldn't see into the future. You couldn't really tell us what we were about to face in the years ahead. Nobody knew.
On the website of the history department of St. Andrews Presbyterian College, there's an award citation. It says, “Junior Angela Swanson captured the Blair Turner award for distinguished research and writing during the 2006-2007 academic year. Swanson's work . . . was, according to Department Chair Dr. David Herr, ‘an outstanding example of innovative research using primary resources available online, written with a mature voice rare among undergraduates anywhere. Ms. Swanson has an exceptional appreciation of historical context and a beautiful narrative voice.’”
I wish I could travel back in time and show Angela’s prize to Ray Duff and the health policy seminar in graduate school. I would like to hear them discuss her term paper. (What did it cost? What is it worth?) I want her to meet Syd Spiesel some day. They would like each other.
This coming Saturday, Angela Nicole Swanson will drive her powered wheelchair across the stage at St. Andrews Presbyterian College in Laurinburg, North Carolina. In the company of her family, her friends, and her fiancé, Angela will receive her Bachelor of Arts diploma, graduating with honors.
Angela, this is for you. Congratulations.