Dr. Sandemelir continued with what was turning into a sales pitch. She brought out a laminated card the size of a sheet of paper. Explaining the two diagrams on it, she walked me step by step through them. It was a color illustration of what the pump arrangement would look like anatomically, two angles of the same human subject, one facing forward, the other in profile. Visible in both the front and side views was a circular reservoir smaller than a hockey puck implanted under the skin of the two figures’ lower abdomen. A catheter then ran internally (within the body) from the reservoir in the front of the body around to the back, to the lumbar area (above the buttocks), entered the canal surrounding the spinal column and threaded within the canal up to about the midpoint of the thoracic spine (below the shoulders). There, within the spinal column canal, in an area called the intrathecal space, liquid Relaxanoid would emerge from the catheter tip in a slow drip and mix with the CSF surrounding the spinal cord. The CSF, with the drug Relaxanoid diffused into it, eventually would spread up into the CSF surrounding the brain, the target for the drug.
Laying the card aside, she said, “When Relaxanoid is supplied this way, the patient needs less of it, and this minimizes some of the drug’s negative side effects such as drowsiness, nausea, low blood pressure, and dizziness, not to leave out the drug’s toxic effect on the other organs.”
She paused for a moment to let this information sink in, then resumed. “There is also the matter of convenience. You will only have to come in once every six months. The Relaxanoid pump reservoir only needs to be replenished with liquid Relaxanoid roughly twice a year.”
She informed me that she or her physician assistant, Ms. Bosman, would refill it. One or the other of them would insert a needle through the skin to the reservoir (located to the side of August’s lower abdomen) just below the skin’s surface and inject a fresh supply of Relaxanoid into it using a syringe. Setting the dosage of liquid Relaxanoid entering the patient’s spinal fluid would be regulated wirelessly via remote control. At this point, she showed me the remote control, and she let me hold it, but for no more than ten seconds, as though it were precious.
She described for me the long-term benefits, in essence what would be the payoff. “With reduced systemic spasticity,” she said, “August might be able to gain sufficient motor control to feed himself. With occupational therapy he may eventually be able to guide a spoon into a bowl and bring the food to his mouth. He won’t need to be hand-fed. Not at first, of course,” she cautioned, “but with occupational therapy. Immediately following the surgery he would spend two weeks as an inpatient at the Brooks Rehabilitation Center here in Jacksonville.”
“With therapy,” she continued, “he should be able to walk more naturally in his gait trainer, as opposed to what he is doing now.” Currently he was thrusting himself forward with spasmodic, jerky motions.
“I don’t know,” I said. “The pump’s probably too expensive for us.”
“The Relaxanoid pump is not experimental. Your insurance plan will approve the pump, its implantation, the two weeks of therapy at Brooks, and all of the follow-up. With your PPO plan, it will cover 80 percent of these expenses, and Medicaid will pick up the remaining 20 percent.”
“Is the pump dangerous?” I said. “It seems terribly complicated.”
“These pumps represent a sophisticated approach to managing spasticity,” she told me. “They have been in common use for well over a decade. Dozens of children living in the local area now have them.” In essence, she was telling me that the pump was reasonably safe, almost as safe as riding in an airplane. Having a pump implanted in our son was just about worry free.
“But are they really safe?” I persisted.
At this point the Yellow Man looked me straight in the eye and assured me that the pump was a safe product. If Ilene and I decided to go with it, he went on, he personally would accompany us “on each step of the journey.” Everything would go well—he would “make certain.” He would “see to it.”
When I spoke with Ilene that night about the pump, she was full of doubt. In fact, she flat out didn’t like the idea. She had been made cynical about medicine after having given birth to August in one of the world’s finest hospitals.
Ilene wasn’t able to attend these appointments with Dr. Sandemelir. My employment at the university allowed me more flexibility than her job did. I could work late at night or early in the morning, whereas her patients had to see her during regular business hours. Working in a physical therapy practice she didn’t own meant that she was paid hourly. For each hour she took off from work, she had to cancel an appointment with a patient, and doing so meant not getting paid for that hour. Given our shaky finances due to the high cost of August’s care, canceling patients was not an option.
At the next appointment, when it was just Dr. Sandemelir, August, and I, the doctor didn’t want to dwell on the pump’s potential hazards. When I pressed her a little more, she conceded that there had been some problems when the pumps first came on the market over a decade earlier. But she immediately reassured me, saying, “We’ve come a long way since then.” The only perils she would admit to were minimal and manageable, having mainly to do with the pump hardware having been known to malfunction or the catheter kinking. But about these problems she remained vague. How many pumps overall had the pediatric neurosurgery program implanted? She couldn’t produce a number. Could Ilene and I speak with other parents whose children had received the pump? No, we couldn’t: HIPAA (the Health Insurance and Portability and Accountability Act of 1996) prohibited giving out names, she said. How many pumps had the program been forced to remove, for whatever reason? She couldn’t say.
That night I said to Ilene, “This is what the doctor tells me August needs.” She still didn’t like the pump, but gradually she began to reconsider the matter. She and I deliberated for months. In fact, we agonized. What inclined me to favor the pump? The mysterious, handsome, and charismatic Dr. Joyce had an impressive publishing record; he was highly accomplished, the expert’s expert. And Dr. Sandemelir’s medical training was fresh, and her pitch was seductive. Through a kind of rhetorical hocus-pocus, she was able to alchemically transform a mere mechanical implement into a medical marvel. It was as though she were pulling back the curtain and allowing me to glimpse a scene from the future.
Overall, what Dr. Sandemelir and Dr. Joyce offered was terribly appealing. I trusted them because they were operating this university program through Bensalem-Salomon—a children’s hospital and a beloved local institution. No one in the community doubted for a second that it was doing good and important work. To even suspect that the motives of its physicians or the institution itself might not be 100 percent honorable and altruistic would have been blasphemy.
I asked around about the pump. At Mt. Herman (August’s school) and the DLC Nurse & Learn, where he went after school, I mentioned it to one person after another, other parents and the teachers and staff. From them I detected muffled, generalized complaints. However, no specific game-changing horror story ever came to light. It was as if people didn’t like the pump, but they couldn’t say why. Nor could I find anything damning about the Relaxanoid pump on the Internet. I Googled repeatedly, using one set of search-term combinations after another, but nothing negative turned up. Had Jeanne Lenzer’s book The Danger Within Us: America’s Untested, Unregulated Medical Device Industry been published, or the Netflix documentary about medical devices, The Bleeding Edge, been released, I would have been warned. But Lenzer’s book would not come out until 2017, and the documentary not until 2018—seven and eight years, respectively, in the future. Consequently, the premonitions of ill fortune were like household moths—it was hard to locate where they were breeding.
On the other side of the question were Dr. Sandemelir and the positive persuasion she brought to bear. She was a techno optimist, and her enthusiasm was infectious. And then there was the pump itself. The very device inspired awe, and the fantasy gripped me. It made possible a beaut
iful vision, one in which August would be transfigured. His flesh and bone would become entwined with a digital-mechanical device. Our boy would become a citizen of the brave new world, a hybrid of sentient being and machine, a technological human. My latent transhumanism—my own dormant ableism—came to the surface in vivid, futuristic fantasies. I envisioned August breaking free of his chrysalis to embody a new genre of human being—the cyborg.
Ilene rearranged her patient schedule and managed to attend one of August’s doctor’s appointments. And so, late one afternoon in May 2010, the four of us—Dr. Stephen Cohen—August’s regular pediatrician, August himself, and his parents—occupied one of the small examining rooms in the pediatric group practice to which Dr. Cohen belonged, located just off San Jose Boulevard near Baymeadows in the Mandarin neighborhood. Dr. Cohen was an older physician nearing retirement. I knew that he cared deeply about August. Back in 2001, when our family moved from San Francisco to Jacksonville, he had agreed to take August on as a patient in part because of our mutual Stanford connection. He had served his residency in the Stanford Medical Center, and I had earned my PhD in Stanford’s English department. But he also wanted August as his patient because he wished to accept the challenge that a boy like him would pose.
Ilene opened the appointment by explaining the reason why we had come. Dr. Cohen then repeated her words slowly and carefully, as if unsure that he had heard her correctly. “The Hippocrates Relaxanoid pump,” he said. The stress lines of his face seemed to deepen. It was as though the very words troubled him. After a long pause, he said again, “The Hippocrates Relaxanoid pump,” but this time with certainty and with thinly veiled contempt. He looked down at the floor, from the floor to the ceiling, ceiling to floor. Finally, he looked up, first at Ilene, then at me, and said, “Be very careful.”
Ilene and I stood there, waiting for more. Finally, she said, “For me, as a physical therapist and a mom, the biggest selling point is that the spasticity is masking his function. And if he had the Relaxanoid pump and went to rehab at Brooks to maximize his function, he would have a chance to do more. We as his parents should let him have this chance to do all he can, to move and to communicate with us.”
Dr. Cohen nodded as he listened to her.
“And the Relaxanoid pump,” she continued, “would help with all that pushing up into standing he does while in his wheelchair. He breaks straps and the foot pedals of his wheelchair doing this. He even once broke off his headrest. He would stay more comfortable in his wheelchair, when he is riding on the school bus and sitting at school and for feedings.”
Dr. Cohen was taking all of this in.
“The Relaxanoid pump,” she went on, “would decrease the scissoring of his legs when we are doing diaper changes and when he is trying to walk in his Rifton. It would save him from the ‘charley horse effect,’ which is just the spasticity tightening up his leg muscles.”
Dr. Cohen asked, “Has the charley horse effect continued with the Botox injections?”
“Botox is managing it,” she said. “But Chris is August’s primary caregiver, and his having to go into Dr. Sandemelir’s office so often for the Botox injections inconveniences him. Because of the herniated disc in my neck, he has to do all of the therapy and doctors’ appointments. He goes almost every week to one appointment or another for August. And that’s on top of doing a lot of August’s morning and bedtime routine, his feeding, hygiene, dressing, and bathing. And that’s not to mention taking him to school every morning and picking him up almost every afternoon. That’s a lot of time out of his work week.”
What followed then was Dr. Cohen’s sober appraisal. “Nothing is inherently wrong with the device itself, at least that I’m aware of at this time,” he said. “The problem is with the highly invasive procedure that implanting it requires.”
I broke in, “But if it can relieve his spasticity . . .” I thought Dr. Cohen was being too cautious, too conservative, too old. I added, “What could go wrong?”
“A lot can go wrong,” he said in a short tone betraying impatience with my naïveté. He went on to say that patients of his who had entered the Bensalem-Salomon pump program had experienced difficulties. “Major problems,” he said. “Whenever you go into the back like that, you run the risk of serious unintended consequences.”
“But they do work,” I insisted.
“The pump is an aggressive approach,” he said firmly. “It’s a highly invasive procedure. There’s a simpler one available that’s close to equally effective, and that’s the treatment Augie’s currently on—Botox. You do know, don’t you, that you can go on indefinitely using Botox and achieve the same therapeutic effect as the pump? There have been some adverse effects with Botox, but, if I had to choose between the pump and Botox, I’d choose Botox. The risk is negligible compared to the pump.”
“Are you against it because it’s high tech?” I asked.
“No,” he shot back, “but I don’t cut my steak with a chainsaw either.”
“But the pump would be so much easier. I wouldn’t have to go into Dr. Sandemelir’s office every three months. I’d only have to go in every six months.”
“The pump is the impressive ‘go-big-or-go-home’ option,” he countered. “We Americans don’t think well of ourselves if we don’t ‘go big or go home.’ We want to go full throttle all of the time. We want the most aggressive solution there is. Anything less, we think, is half-hearted—we worry that we’re not doing all that we can. But in medicine, believe me, sometimes less is better.”
We all stood there silently for a moment, except of course for August. He was cooing as he sat strapped into his wheelchair and played with a toy secured with a bungee cord to the tray in front of him. Finally, Ilene said, “What are the things that can go wrong?”
“Infection is the main problem,” the doctor replied. “And problems with the back, the spinal column. A lot can go wrong when you go into the back. But any number of things. I wish I could tell you more. HIPAA restrictions, you see, prohibit me from discussing specific cases with you. But, believe me, a lot can go wrong.”
I didn’t say anything, but I remember thinking, If there’s an infection, they’ll treat it with antibiotics and make it go away.
Dr. Cohen then added that August was a particularly bad candidate for a pump—his nonverbal status, he believed, should disqualify him. Two days earlier, Dr. Sandemelir had addressed this very concern. She had underscored that August’s disabilities—his nonverbal status—should not keep him out of the pump program. Dr. Sandemelir had said, “August has as much right to a pump as any typically developing child.”
But this day Dr. Cohen pointed out that August, being nonverbal, wouldn’t be able to tell anyone how the pump was making him feel. And how and what he felt would be an important factor in helping Dr. Sandemelir find the right dosage of Relaxanoid. “The speed of the pump is how the dose is determined,” he informed us.
“Yes. It’s wireless,” I said. “They use a remote control. I know because she let me hold it.”
At this he gave me a look as though I were an imbecile. And then he said, “Without a verbal cue from the patient, how’s Dr. Sandemelir going to know at what speed to set it? Doing this right requires constantly adjusting the speed in light of the patient’s spoken response.”
“Clinical observation,” I said.
“But if Augie can’t tell her what or how he feels, I don’t see how she’s going to be able to do that.”
“Clinical observation,” I repeated.
“Will that be enough?”
“I’ve been told it will be.”
“But I don’t think it will be. He’ll be a black box. By your own admission, Dr. Sandemelir is only going to see him once every six months. How can she possibly do any clinical observation if she hardly ever sees him? And you as the parents, how are you going to be able to judge? It will be up to you to perform the ‘clinical observation.’”
He paused for a moment, then said, “N
o! I don’t like the sound of this at all! Putting a pump in Augie will be like launching an astronaut into space without giving him a way to communicate. Bad things could happen, but he’d never have a way to tell anyone.”
Ilene entered the conversation at this point, saying, “So you don’t think the pump is a good idea.” She was repeating Dr. Cohen’s sentiment for the sake of clarity, to help herself absorb it.
Turning to her, he said, “I have seen so much go wrong.” I remember thinking, If so much has gone wrong, why isn’t that information available on the Internet? I didn’t realize that, in three more years, the stories of trouble would begin to appear there.
Then he faced me and looked at me straight in the eye and sternly held my gaze the way a wise father does when trying to get through to his thickheaded son. He was doing this for my own good and for August’s. If grabbing and shaking me had stood a chance of changing my mind, he would have done it. If slapping me would have gotten the point across, he might have done that too.
But instead he tried using psychology. “You’re an English professor, am I correct? And a Stanford man. Then you should know your Shakespeare. Do you remember what Albany said in King Lear? Albany says to Goneril, ‘Striving to better, oft we mar what’s well.’”
He wanted this advice to sink in. We stood a moment longer, our gazes locked. “I’d keep this maxim in mind,” he finally said.
Dr. Cohen continued looking me in the eye several seconds longer, then nodded and turned away when he realized that he had made no impression on me whatsoever.
What is the nature of informed consent? It is supposed to mean that patients or their parents and guardians (or both) are made aware of all of the dangers beforehand so that they can make a reasoned, educated choice. What did informed consent look like in this real-life situation involving our own child? In his book Doctored: The Disillusionment of an American Physician, Sandeep Jauhar points out that “studies have shown that patients take little interest in the informed consent process.” This may be true, but physicians also can be glib.
A Life Beyond Reason Page 13
