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First, Do No Harm

The Dramatic Story of Real Doctors and Patients Making Impossible Choices at a Big-City Hospital

About The Book

“Crammed with provocative insights, raw emotion, and heartbreaking dilemmas,” (The New York Times) First, Do No Harm is a powerful examination of how life and death decisions are made at a major metropolitan hospital in Houston, as told through the stories of doctors, patients, families, and hospital administrators facing unthinkable choices.

What is life worth? And when is a life worth living? Journalist Lisa Belkin examines how these questions are asked and answered over one dramatic summer at Hermann Hospital in Houston, Texas. In an account that is fascinating, revealing, and almost novelistic in its immediacy, Belkin takes us inside a major hospital and introduces us to the people who must make life and death decisions every day.

As we walk through the hallways of the hospital we meet a young pediatrician who must decide whether to perform a risky last-ditch surgery on a teenager who has spent most of his fifteen years in a hospital; we watch as new parents battle with doctors over whether to disconnect their fragile, premature twins from the machine that keeps them breathing; we are in the operating room as a poor immigrant, paralyzed from a gunshot in the neck, is asked by doctors whether or not he wishes to stay alive; we witness the worry of a kidney specialist as he decides whether or not to transfer an uninsured baby to the county hospital down the road.

We experience critical moments in the lives of these real people as Belkin explores challenging issues and questions involving medical ethics, human suffering, modern technology, legal liability, and financial reality. As medical technology advances, the choices grow more complicated. How far should we go to save a life? Who decides? And who pays?

Excerpt

The Committee The Committee
It was standing room only in Room 3485 the day the committee voted to let Patrick die.

Nearly three dozen people crammed the small windowless room, outnumbering the two dozen thinly padded chairs. After the seats were filled, latecomers propped themselves against the walls, careful to keep their distance from the dusty chalkboard. Whether sitting or standing, everyone was fidgeting. The emerald carpet only partly silenced the shifting and tapping of their feet.

Lin Weeks’s secretary, Ellen Nuñez, always thinks herself lucky when she can book the committee into Room 3485. In Room 4487, the classroom one floor up, the blue-gray carpet is pocked with cigarette burns. Too seedy for her boss’s pet committee. Room 5488, one floor higher still, is often reserved for CPR training, and its yellow-white stains, the ghosts of former puddles, are from the Clorox used to disinfect the mannequins’ mouths. Too seedy and too depressing. But in this room, Ellen thinks, the varied greens of the carpet, chairs, and chalkboard are calming, or as calm as one can ask for in a hospital. And some pretense of calm is important for these meetings about life and death.

Any soothing effect of the decor, however, was lost on Dr. Javier Aceves, the young pediatrician struggling with Patrick’s case. He sat at one end of the long wooden table, with his back to the door and his tired eyes scanning the audience of committee members. Following procedure, he began the session by reciting the basic facts, speaking in the shorthand monotone that is expected at meetings in hospitals.

“Patrick Dismuke is a fifteen-year-old boy, well known to this committee, who is currently in the pediatric critical care unit on a ventilator,” he said. “His current hospitalization began two months ago, and this is his second prolonged hospitalization this year…”

He needn’t have bothered. Everyone in the room knew Patrick. In fact everyone at Hermann Hospital knew Patrick. He had been a patient there for all of his fifteen years, and during that time he spent more days in the hospital than out of it. He had been operated on at least twenty times, probably more, but somewhere along the way his doctors lost count. Although each operation lengthened his life, none came close to curing him.

Patrick was born with Hirschsprung’s disease, a disorder of the digestive tract, and after years of surgery to snip out parts of his intestine, he was left unable to digest his food. His was a severe case, and his life was hanging by a literal thread—a thin tube that dripped nutrients and medicines into his veins while he slept. Like most invasions of the body, this one wasn’t perfect: He needed the line to live, but the line itself could kill him. Because it broke the barrier between blood and air, it was a bacterialaden Trojan horse, opening the door to infection and allowing it to overwhelm his body. In turn, the fight against the bacteria caused as many problems as it solved. The constant use of antibiotics provided ideal breeding ground for yeast and other types of fungi.

During the pauses between infections, the veins that held Patrick’s lines would become irritated to the point of collapse, until all the easily reached ones were useless to him. When tubes couldn’t be threaded from outside, surgeons opened him up and threaded them from inside. During the last operation the plastic tube was stitched directly into his heart.

Through all this, Patrick was making history. Not the front page headline kind (though, never the shy one, he would have liked that), but the type of news that fills the 20,000 medical journals published worldwide every year. His IV nutrients weren’t meant to feed anyone for more than a short period of time, certainly not for fifteen years, and, as far as anyone knew, this was as long as anyone had lived on the milky yellow contents of the squishy plastic sacks. As Javier put it: “We’re winging it one day at a time.”

The question before the committee was how many more days to wing it. As they spoke, Patrick was upstairs on a ventilator suffering from pneumonia, with a tube down his throat to help him breathe. He was conscious, and he was miserable. His feeding line was working in fits and starts, clogged by infection. He was being simultaneously kept alive and tortured by a nightmare of an antifungal drug called amphotericin B. Over the years, patients unlucky enough to use the drug have renamed it Amphoterrible, or Shake and Bake. The ampho causes violent fevers, which in turn cause chattering chills. It also tends to linger in the kidneys, eating away at the tissue.

For both these reasons doctors don’t use the drug a day longer than it takes to kill the infection. Three weeks is considered tolerable, six weeks is of concern, twelve weeks is really too long, but the alternative—free rein for the infection—is still worse than the attempt at a cure. By the time this committee meeting was called, Patrick had been on ampho for eighteen months.

“He’ll need a new line soon,” Javier said near the end of his little speech. “We know he’ll need another one after that and another one after that. Do we keep opening his chest over and over? Without the new line he’ll starve. Which is worse?”

He looked up from his notes, folded his hands, and waited for an answer.

Medicine, specifically hospital medicine, is about meetings. Many are as unscheduled and unstructured as doctors gathering with a patient’s family in the hallway to get their consent for surgery. Others are more official but stop short of requiring seats—morning rounds, for instance, where the staff walks from bed to bed to bed, allowing those who were on call all night to update those who were at home asleep.

And then there are the full-blown meetings, with membership and agendas and chairmen. It is a telling measure of bureaucracy and economics at Hermann that as many as half its beds are sometimes empty but its conference rooms are often double-booked. Even as the committee decided on the fate of Patrick, another group milled outside, waiting to use the room. Every so often someone at Hermann tries to make a master list of committees and gives up, stymied by the fact that few administrators can remember all the meetings they attend. There was talk several years ago of starting a Committee on Committees to whittle down the number, but that was one group that was never formed. It probably would have been lost, anyway, a lone time slot on a cluttered calender.

There are ever more meetings because there are ever more decisions, and many of them are choices that no human being, with or without a medical degree, should be asked to make. Time was when medicine could do very little for critically ill or dying patients. Now it can do too much. Where to draw the line is the subject of a broad, heated debate throughout the country, a debate that becomes louder with each new medical miracle or impossible case: Should a Michigan doctor be allowed to hook desperate patients to a “suicide machine”? Should the state of Oregon be permitted to deny expensive organ transplants to the poor? Should a fertilized egg, in deep freeze in a laboratory in Tennessee, be considered a “child”? If so, who gets custody when Mom and Dad divorce? Should a Florida man be sent to prison for helping his disease-ravaged wife to die? Should a Missouri hospital refuse to withdraw life support from a comatose young woman named Nancy Cruzan even though her family believes there is no hope? Should a Minnesota hospital insist on withdrawing life support from a comatose older woman named Helga Wanglie despite the fact that her family believes there is still hope?

These questions seem dramatic and rare until you spend any time at all in a hospital. Then you realize that questions this complicated are asked every single day. Few reach the newspapers or become court cases, but each one causes pain and requires a solution, or something that pretends at a solution. Usually the best result is merely a half-hearted decision to accept one of two impossible choices.

And who answers these Solomonic questions? Hermann has formed a committee. It is called the Institutional Ethics Committee, and it meets whenever necessary in Room 3485. It has been doing so since 1983, and, back then, it was the only committee of its kind in the Texas Medical Center and one of the first in the nation. At that time, fewer than 4 percent of the country’s hospitals had ethics committees. Within four years that number jumped to 60 percent, and eventually every major hospital in the United States will probably have one.

The topic the Hermann committee discusses most often is withdrawal of life support—whether and when to turn off the ventilator of a patient who cannot breathe on his own or remove a feeding tube from a patient who cannot feed himself. The topic the committee discusses least is money—whether the hospital can afford to provide a certain type of treatment.

A lovely myth, central to American society, pretends that money makes no difference. A hospital will not turn the poor from its doors, this fairytale goes, and once a patient is inside, decisions about his care are based solely on medical need, rather than ability to pay. For life and death decisions, that is still primarily true. Laws and morals still require that lives be saved before insurance cards are checked. For all other decisions, however, money matters very much, a fact made clear by simply reading a patient’s chart; the insurance status (“Blue Cross/Blue Shield,” “Medicaid,” “None”) is stamped on every page. Ask Patrick’s doctors who is paying the bill, and they will answer that Hermann probably will. If money were irrelevant, they would have no need to know.

Still, the committee has always agreed, without saying so directly, that costs are none of its concern. Its duty is to rise above any talk of dollars and cents or allocation of resources and carefully limit its conversations to what is ethical and just. But as the costs of medical care keep rising, discussions of money have been increasingly more difficult to avoid, at Hermann and in the rest of the medical world. So although money is rarely mentioned directly at meetings like this one, the unspoken subject is almost always there. Is Patrick a question of money? Is it unethical to think of the cost of his care or irresponsible not to? How much more should be done for a boy whose death is inevitable and who is costing the hospital hundreds of thousands of dollars a year?

There was a brief silence after Javier finished, and then Lin Weeks spoke up. A former intensive care nurse, she is now a vice-president of the hospital, in charge of the nurses in charge of many clinical services. It’s an important job, and Lin is good at it, racing through her twelve-hour days, her date book as her guide, a marathon of conferencing, suggesting, brainstorming, and advising. She is also the chairman of the Ethics Committee. That job is her passion.

“Is there any remote possibility of curing him?” she asked Javier.

“No. He’s a dying boy. We’ve all come to think he’ll live forever, but Patrick is a dying kid.”

“Are there any alternatives other than a new line?”

“I’ve looked into a full gut transplant, replacing everything. It has been done—in Russia, rarely, and I think there have been a few cases in Canada. But in both places all of them have died. Also, there’s a surgeon at Baylor who’s experimenting with stimulating the bowel to make it grow. It’s promising, but Patrick’s too sick for that.”

With the mention of the transplant and the surgeons at another hospital, Richard Weir leaned forward, readying for a fight. Richard had known Patrick longer than almost anyone at Hermann, first as his play therapist and then as one of his closest friends.

That’s why I asked for this meeting, because people started talking about gut transplants and transfers,” Richard said, gaining speed as he talked, stressing certain words for emphasis. “Why are we thinking of this? Why are we thinking of sending this child, who is so dependent on his support system here, to another hospital, to surgeons at Baylor, to do something that has no chance of working?

“Even the simpler idea,” he continued, “namely doing another surgery here to insert a new line. Why are we talking of putting him through that when we know it will make him miserable, it won’t make him well, and it won’t last?”

He shifted his gaze from Lin to Javier. “Are we doing this for him or are we doing this for us? Are we just too attached to him to let him go?”

One nurse standing in the back of the room broke rank with an answer: “You can’t starve him to death. How can you give up?”

Hearing that, Kay Tittle shook her head and forgot her promise to keep quiet lest she get too emotional.

“There’s a lot of hostility toward those of us, like Richard and me, who are talking about this,” said Kay, Patrick’s main nurse, a petite, solid woman, who blushes easily and is known throughout the hospital as Patrick’s Other Mom.

She chose each word carefully—diplomacy is all in meetings like these—determined to make her point. “We’re not giving up,” she said. “I’m not giving up on him, but I can see what we’re going to create. We talk a lot about quality of life, doing all of this to preserve his quality of life. Well, what would be quality of life for one child would not be a quality life for Patrick.

“What if we do this surgery, and he’s still alive and we can’t wean him off the ventilator?” she continued. “It’s been getting harder every time. You know Patrick, it would destroy him to be that way. Why are we fighting so hard to keep him alive if he’s going to be miserable?”

Javier’s answer was almost a whisper, all but drowned out by the hum of the air-conditioning. He nodded, and his voice was sympathetic, but his words were not exactly what Kay wanted to hear.

“I also want him to have a quality life,” he said. “I want to do anything he needs to enjoy life, and if that means doing another thoracotomy, opening his chest, so he can get around and do what he enjoys doing, so be it. Maybe that will make his life worse. But if we don’t do it, he won’t have a life.”

He looked at Lin, then at Richard, then at Kay. “I need to know if this is the last line we can put in,” he said. “I’m feeling very lonely with this decision.”

Once again the room was silent. Over the past hour and a half all that needed saying had been said. Lin thanked everyone for coming and waited as the guests left and only the committee stayed seated. Javier didn’t have to leave, since he was a committee member, but he knew he had no place at the decision-making part of this particular meeting. There was some shaking of hands and exchanging of social pleasantries as the visitors headed for the door, as if they were asking the committee to decide among a number of different business proposals rather than a number of different ways for a teenage boy to die.

A clipped, cold tone, distracting to an outsider, is standard at most meetings at hospitals. Just as police officers can drink coffee and tell jokes while standing next to a sheet-covered corpse, hospital staffers are matter-of-fact on the subject of death. Critics might use the word “hardened,” and though that’s accurate, it’s also too simple. The emotional distance infuriates patients, but it keeps doctors sane. Most medical students are flattened by the first death of a patient, and that is as it should be. But if the doctor who has been practicing for twenty years still feels each death and downturn with the same intensity he felt the first time, he wouldn’t be of much use to his patients.

So doctors look for a buffer zone, a barrier between themselves and what they do, a line that says, “I will give you this much of myself and no more.” In hundreds of large and little ways the profession seeks to take something emotional, messy, unpredictable, and unstructured, and tries to give it form. When the patient does X, the doctor does Y. When it’s 10 A.M., it’s time for rounds. When faced with an ethical dilemma, take it to a committee. Make it neat and ordered, part of an agenda.

Once the visitors had left, the entire Hermann Hospital Ethics Committee proceeded to disagree politely. The conversation turned staccato, bouncing around the table from member to member.

“Would it help to ask Patrick what he wants?”

“He’s fifteen years old, he’s just a kid.”

“It’s his life.”

“They would have to ask him if we made him DNR.”

“Are we suggesting that? No one asked us about Do Not Resuscitate.”

“I think we should suggest that. In a way that’s what they were asking. ‘How much more do we do?’ Not resuscitating is an answer to that question.”

“Will his mother agree?”

“Last time she said, ‘Whatever the doctor says.’ This time she didn’t want to come. She told Javier, ‘Whatever the doctor says.’?”

“Would DNR mean no surgery?”

“I would think so. It’s a decision to hold back. Another surgery is hardly holding back.”

“There’s no right answer to this one.”

“Is there ever?”

Halfway through the conversation Randy Gleason, the hospital’s lawyer, began to scribble on the yellow and white form titled “Advisory Opinion of the Institutional Ethics Committee.” In the space labeled “Specific Issue to Be Considered,” he wrote, “Considering the patient’s terminal prognosis and current quality of life, should extraordinary medical measures be initiated or continued?” In answer, he wrote: “The opinion of the Institutional Ethics Committee is that it would be appropriate to initiate Supportive Protocol II,” the hospital policy that allows doctors to stop fighting to cure patients or even keep them alive, requiring only that they be kept “comfortable.” After everyone signed the form, Randy checked the box labeled “unanimous.”

Javier was waiting on a stiff-backed foam-filled couch outside Room 3485 when Lin walked out and gave him a copy of the form. He carried it down the hall, where Patrick was sleeping, and slipped it into the boy’s chart. But that was hardly the end of the story. One rule of medicine is that illness doesn’t read the textbooks. This would not be the last meeting, official or otherwise, about Patrick.

About The Author

Lisa Belkin writes about American social issues. Her many roles at The New York Times included national correspondent, medical reporter, contributing writer to The New York Times Magazine and creator of both the Life’s Work column and the Motherlode blog. She has served as a senior columnist at the HuffPost and chief national correspondent for Yahoo News. Belkin is the author of three books, including Show Me A Hero, which was made into a David Simon HBO miniseries with the same title. She teaches narrative nonfiction writing and reporting at the Columbia University School of Journalism. 

Product Details

  • Publisher: Simon & Schuster (February 16, 2021)
  • Length: 272 pages
  • ISBN13: 9781982153373

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