The Doctor Crisis

Dedication from Charles Kenney

This book is dedicated to the memory of my beloved son

Charles F. Kenney

1987–2012

Belmont Hill School, 2006

Brown University, 2010; Captain, Brown Lacrosse, 2010

1st Lieutenant, United States Marine Corps

S-2, Headquarters Company

7th Marine Regiment

1st Marine Division

I Marine Expeditionary Force

Preface

We love being doctors because we have the privilege of being able to alleviate suffering, to change lives, and to save lives.

When I traveled to Ecuador to operate on children with a variety of deformities and birth defects, I had the good fortune to meet eight-year-old Antonio Moreno and his father. They had traveled from their remote farming village on foot, then atop a wagon, and finally on a bus—a day-and-a-half journey—to reach the small hospital.

Antonio had been born with a cleft lip. He hated going to school, where other children made fun of his appearance. When I examined Antonio at the hospital, it was clear that he was an ideal candidate for surgery, and we put him on the list. There was such a large number of patients that many who were on the schedule had to wait a couple of days before surgery. Some families were lucky enough to get a small room in a hotel nearby, while others slept on benches outside the hospital.

When Antonio’s turn came, my colleagues and I went through a simple routine prior to surgery that includes the anesthesiologist explaining her role and the work as well as the risks. Speaking to Mr. Moreno through an interpreter, the anesthesiologist explained that she was going to put Antonio to sleep and place a breathing tube in his throat. When the surgery was complete, she would let the gas wear off and take out the tube. The anesthesiologist explained that while there are always risks to surgery, she expected it all to go very smoothly.

I watched as the interpreter conveyed this information in Spanish, and it was clear that Mr. Moreno was surprised. He asked, “What risks?”

The anesthesiologist explained that these things were rare but that there could be an infection of some kind or perhaps some excess bleeding, and in extremely rare cases death was possible. As the translation was conveyed, I watched Antonio’s father closely. He appeared stricken.

Through the interpreter, Mr. Moreno asked, “He could die?”

Gently, the anesthesiologist explained that it was theoretically possible but extremely unlikely.

Mr. Moreno took his son by the hand and said that they were going back home. When we tried to explain to him that we thought the surgery would go very well, he told the translator, “I am not taking any chance of losing my boy.”

Suddenly, the unit grew quite tense. I had performed these surgeries hundreds of times from Nepal to the Philippines to Nicaragua, and I had never before encountered a reaction like this.

But then something amazing happened. Little Antonio led his father by the hand to the far corner of the room, where they spoke in whispers for about fifteen minutes. You could see that it was a highly emotional discussion.

When they were finished talking, the father wept. They emerged from the corner, and Mr. Moreno told us that Antonio said he desperately wanted the surgery. His father told us through the interpreter, “Antonio says he would rather die than live this way.”

The only sound in the clinic was that of Antonio’s father sobbing. We comforted Mr. Moreno as best we could, settled him in the waiting area, and wheeled Antonio into the operating room. Then we—the clinical team—went to work.

During my career I have performed thousands of surgeries of varying kinds, but having the opportunity to operate on this little boy was one of the greatest blessings of my life. When we were finished and Antonio came in to recovery, his father saw that his son had surely made it through the surgery. Mr. Moreno also saw how beautifully transformed his son’s face was. And again Mr. Moreno cried, but this time it was with a profound joy that I will never forget.

I love being a physician. I love it for many reasons, but the main one is because of what I am able to do for people like Antonio. And the incredible thing about being a doctor is that every one of the almost one million physicians in the United States has a similar story—not a cleft lip necessarily but a story in which the physician changed someone’s life in a magnificent way. Countless specialists and primary care physicians alike have stories in which they literally saved a life—reached in and rescued the patient from the edge of the precipice. Or they saved many lives—of children, expectant mothers, and aging grandparents. The joy and satisfaction in those moments for physicians is unlike any other experience.

To reach the point where we can do these things requires years and years of hard work, including the rigor of a heavy science load in college followed by the unrelenting demands of medical school. Academic work combined with clinical training builds the skills that gradually transform the student into a clinician who advances to residency training and fellowship, ranging from three to eight years. Only then comes the great reward: the ability to care for people who need you.

This is the heart of the matter. Physicians love being doctors because we have the privilege of being able to calm fears and alleviate suffering—to change and save lives. This is what motivates doctors virtually every single day of their lives. When the structure and culture in which physicians work are well aligned, it is a most rewarding job.

But something has gone wrong in the physician world, and it is urgent that we fix it. Fundamental flaws in our system make it more difficult and less rewarding than ever to be a doctor. A 2012 Physicians Foundation survey found that nearly eight in ten doctors were “somewhat pessimistic or very pessimistic about the future of the medical profession.” A report from Harris Interactive, a leading research firm, described the practice of medicine today as “a minefield” where physicians feel burned out and “under assault on all fronts.” Mayo Clinic physicians Liselotte N. Dyrbye and Tait D. Shanafelt wrote in a commentary in the Journal of the American Medical Association (JAMA) that 30–40 percent of physicians in the United States are “experiencing burnout.” Dyrbye and Shanafelt note that physicians suffering from burnout “are more likely to report making recent medical errors, score lower on instruments measuring empathy, and plan to retire early and have higher job dissatisfaction, which has been associated with reduced patient satisfaction with medical care and patient adherence to treatment plans.”

Never before have physicians been under so much pressure from so many sides. Many physicians feel inundated with administrative matters that prevent them from devoting their full talents to their patients’ well-being. Ask doctors about the atmosphere in which they practice, and you often hear words such as “chaos,” “conflict,” and “dysfunction.” How can a nation transform its health care system when so many physicians feel such deep pessimism about the future of their profession?

The reality of our situation in the United States is clear. We cannot achieve high-quality, accessible, affordable health care for all unless we solve the doctor crisis. Unless physicians are provided with the team-based support they need to focus on patient care—and are not weighed down by work that other team members can do—progress will stall. And lest anyone read into our view that we are being overly physician-centric by focusing on the doctor crisis, we strongly believe that freeing doctors to concentrate on providing excellent care is, by definition, patient-centered. In fact, when the question “what do physicians want?” is asked, the answer is clear. Physicians want the team support to be able to give their patients the time, attention, and care they need. That is what drives the great majority of doctors in our nation, and while the crisis is most acute within primary care, it applies across the specialties as well. As Dr. Jay Crosson, vice president of Professional Satisfaction, Care Delivery, and Payment at the American Medical Association, observes, “Taking physician satisfaction seriously does not mean giving physicians anything they want, but it should mean creating an environment where physicians are always able to put patients first.”

And that is the heart of the doctor crisis. Far too often, physicians are prevented from putting their patients first—ahead of administrative hassles, finances, insurance company demands, regulations, and more. These barriers nearly all make sense when one looks at them from a point of view other than the patient, but if we put the patient’s well-being ahead of every other consideration, then it is clear that these barriers must be breached.

Why a book focused on doctors at a time when the language of health care reform is about being patient-centered? Because my coauthor Charles Kenney and I believe that one of the most patient-centered actions we can take is to fix the doctor crisis in our country. Solving this problem is a prerequisite to creating a health care system that is patient-centered, safe, equitable, accessible, and affordable—in other words, to achieving the health care system that we so urgently need in the United States.

Solving the doctor crisis means removing the many barriers between doctors and their patients. But it also means demanding that physicians step up and take stronger leadership roles on behalf of their patients. The bright young men and women who grind their way through medical school and years of training did not do so to check boxes on a form, engage in verbal duels with insurance companies, and spend two to three hours on paperwork. For generations, physicians were primarily healers. Yet in our complex world, they are tasked with broader responsibilities. They must become stronger leaders and better partners. In the United States, patients, families, and communities struggle with uneven quality and access and with inequity and rising costs. A variety of stakeholders can contribute to solving these challenges, but physicians have a disproportionate impact on these issues and a disproportionate responsibility to take on these challenges. Unfortunately, there are too many instances where physicians have served as barriers to change rather than as agents of change. Some doctors are most comfortable on a pedestal. But the great majority of physicians want what is best for their patients, and this drives an increasing number of doctors to actively work for dynamic improvement. Physicians are part of the problem in some places, but they are also essential to the solution everywhere.

Just as physicians have a broader responsibility than ever before, so too does our society have a responsibility to support physicians by emphasizing the preservation and enhancement of their professional careers. We need to liberate doctors from the work that others can capably handle to allow physicians to focus on providing the best care possible. Preserving the professional dignity and idealism of physicians and enhancing their career experience can play a major role in achieving a patient-centered system.

The physician crisis in our country is too often overlooked in policy discussions about future pathways for improving care delivery. The health care improvement movement in the United States is robust and growing. It includes clinicians, administrators, policy makers, and others seeking to create a system whose hallmarks are access, quality, and affordability. Too often, however, policy makers and activists within the improvement movement target physicians as obstacles to improvement—as stubborn, immovable barriers to change. And this is sometimes true. But the time is long overdue for recognizing that the physician crisis is real, urgent, and solvable.

Jack Cochran, MD

PART I

Miracles, Urgency

A Higher Calling

1

A Kind of Miracle

The Beauty of American Medicine

Our biggest fear obviously, besides survival, . . . was that they’d be paralyzed.

When the ultrasound revealed that Emily Stark was pregnant with twins, she and her husband Jim experienced that rare joy bestowed upon first-time parents. The result of a subsequent ultrasound, however, was crushing: the twins were not separate; they were conjoined. When the doctor broke the news—stating solemnly “they’re joined”—Emily and Jim wept.

Most of their urgent questions were unanswerable at that point. The issue of survival loomed over all, but there was no doubt that Jim and Emily would proceed with the birthing process. These were their precious babies, and they wanted desperately to give them life.

The birth presented exceptionally rare challenges. It is often difficult to get a baby out of the mother’s uterus, and getting two babies out can be quite complex indeed. But the birth of two babies—physically joined together—presented complexities of a magnitude greater still. The geometry alone was immensely challenging. The obstacles were many—managing the girls’ airways, dealing with angles of their bodies, and more.

A C-section was scheduled, and Emily was admitted to Saint Joseph’s Hospital in Denver with a simple hope: that the girls would survive. Dr. Brad McDowell, a plastic and reconstructive surgeon, assembled the medical team (including Jack Cochran) who would treat the girls. The three leaders of the team included Dr. McDowell; Dr. Michael Handler, a neurosurgeon; and Dr. Joseph Janik, a pediatric surgeon.

McDowell and the team leaders agreed that they had to be ready to separate the girls immediately after birth in case something should go terribly awry. The physicians’ hope was that they could successfully deliver the babies and then have time to further explore how to separate them—if that was what the parents wished.

McDowell described the scene. “We put together an obstetrical and neonatal team, and we were already pulling together a broader team for possible separation. We were all there, about thirty of us in the room for the birth around 6 or 7 o’clock in the evening. We didn’t know what the situation would be. Would one child be in distress and have to be separated right away? We knew from the X-rays they were joined at the spine, which was pretty serious.”

As tricky as the birth was, it went smoothly thanks to the planning and skill of the obstetrical and neonatal teams. It is difficult to overstate the skill and passion with which these team members worked—physicians and nurses. The delivery was likely the most challenging any team member had ever encountered, yet every physician and nurse involved performed to the highest possible standards of excellence. It was magnificent to see.

The girls—Lexi and Syd—were brought into the world on March 9, 2001, two months shy of their due date. Each weighed four pounds.

“The children both had some respiratory issues,” recalled McDowell, “but they were okay, and they were taken immediately to the neonatal nursery, wheeled down the hallway past the family where there was a lot of crying and a lot of smiles.”

But just hours after the birth, a problem was identified by the surgical team. Doctors discovered that Syd did not have an opening connecting her intestines to the outside of her body. Without surgical intervention, there was a possibility that the obstruction within the intestinal tract would lead to sepsis and death. The situation required urgent surgery—an emergency colostomy—just twelve hours after the birth. A small team of surgeons, anesthesiologists, plastic surgeons, and neonatologists mobilized for the early Saturday morning surgery that successfully solved the intestinal obstruction.

While the birth and the urgent surgery were rare challenges, they were nothing like what lay ahead.

Conjoined twins are exceptionally rare. In the United States, for every one million births about four are conjoined. Scientists believe that during the first two weeks of pregnancy an embryo splits nearly in half rather than completely. Parts of the embryo remain attached.

Jim and Emily Stark, both thirty-one years old, had a decision to make: Should the girls be surgically separated, or should they be raised as they were? Raising them as they were would be difficult, of course, but certainly not impossible—and it would remove some of the frightening risks associated with surgical separation.

Before the parents could make the decision, they needed to know the medical facts. Did the girls share a common bladder or bowel? How comingled were the complex series of nerves that controlled so many functions of their bodies, from waste to reproduction? Could they be separated and both survive? If they did survive, would they ever be able to walk? Would they be paralyzed? Would they be able to have children?

“We could keep them forever,” Emily said, “or we can try to make their lives better with the potential that we may not be bringing them home” (Denver Post).

The possibility of separation surgery triggered profound anxiety. Jim Stark had said early on that one of his most precious wishes was to be able to play sports with his girls when they were older. “I envisioned running in the park with my kids and playing baseball and playing hockey,” said Jim. “That’s not going to happen.”

Jim heard physicians telling them that the worst-case scenario was “waist-down paralysis . . . for life. . . . We’re ready for paralysis. We’re ready for . . . [a] colostomy. But I don’t think you can ever be ready to not have one of them.”

The parents had another decision to make: Who would do the surgery? Were there surgical superstars out there somewhere in the health care universe? Should they go to the Mayo Clinic, Johns Hopkins, or the Cleveland Clinic? They considered a variety of specialists around the world but decided in the end that they were comfortable with the excellent team in their hometown of Denver. They trusted the men and women at Kaiser Permanente (KP) and Denver Children’s Hospital. KP was one of the best-integrated health care systems in the United States, and Denver Children’s Hospital was renowned for quality. One of the great things about health care in the United States is that the level of talent is world-class at so many major medical centers throughout the nation. In America, there is no monopoly on medical brilliance.

Many aspects of the case were highly unusual, of course. One was the size of the clinical team. The twenty-two doctors in total were from both KP Colorado and Denver Children’s Hospital. This level of collaboration was essential for a successful separation, yet it is rarely seen in today’s health care system. Health care at the time—and largely still today—was siloed.

Yet this work required silos to be broken down. It required the combined efforts of the Colorado Permanente Medical Group and the physicians and staff at Denver Children’s Hospital, where the separation surgery would be done. The successful collaboration painted a portrait of U.S. health care at its finest, demonstrating integration of services and cooperation among a large team of highly skilled physicians and staff.

The surgical team, led by Brad McDowell along with Drs. Joseph Janik and Michael Handler, coordinated the separation plan. The delivery and intensive care team was managed by Peter Hulac, neonatology, and Robert McDuffie, obstetrics. The anesthesia team of Drs. Theresa Youtz and Patti Coughlin also played a central role, managing the complex and delicate job of providing anesthesia to two joined babies. Multiple other physicians and nurses in orthopedic surgery, urology, pediatrics, and plastic surgery were also intimately involved in the successful care of the twins.

This was a wonderful example of American medicine at its best. Superbly trained clinicians working as a highly functional team—doctors, nurses, pharmacists, and technicians all working in a coordinated way under steady, inspired physician leadership.

“We held a series of meetings over a period of months because we had decided that the optimal time to separate them was at seven months, which gave us time to do a great deal of research and put an excellent plan together,” explained McDowell. “At our meetings we talked everything through: What did the neurosurgeons need? How about urology and pediatric surgery? What were the challenges each faced, and how could we over-come them? We got clarity on what information, studies, instrumentation, and time everyone would need. And we began to put an order together for the operation—what exactly would happen when and who would do it.”

In preparation for the separation surgery, the doctors performed multiple imaging tests to define the anatomy of the Stark twins. This included a three-dimensional CT scan from which a precise anatomic model of the spine was created. This allowed the team to see and touch a correct anatomic model of the twins’ conjoined spine, which was invaluable to surgical planning. The team also reviewed and discussed the medical literature available on conjoined twins’ separation. Each specialty involved—pediatrics, pediatric surgery, plastic surgery, urology, obstetrics, neurosurgery, anesthesiology, neonatology, and nursing—engaged in close communication, all the while building a coordinated strategy for the surgery. Each team member refined and clarified what would be required for a successful separation.

As doctors prepared for surgery, they were encouraged by the knowledge that the girls had separate hearts, kidneys, livers, and intestines. These were critical indices suggesting a high likelihood of survival. However, the twins did have a significant shortage of skin. A successful separation would require a greater amount of skin to close the surgical wounds. Thus, months before the planned separation, a team of plastic surgeons placed multiple tissue expanders in each girl’s back. This would allow the surgeons to slowly stretch the skin, creating the additional skin needed at separation.

The ongoing tissue expansion created another challenge for the team: How would the girls sleep with these large tissue expanders in place? In addition, doctors were concerned that prolonged pressure on the skin over the expanders could damage or kill the tenuous skin. The problem was solved by providing an air mattress, allowing the girls to sleep on a pressure-free surface and avoid injury to the expanded skin.

During one of the regularly scheduled surgical team meetings, the team decided to perform a full dress rehearsal for the separation surgery. On the Saturday two weeks prior to operation, the team gathered for a rehearsal using two dolls attached back-to-back with Velcro as stand-ins for Syd and Lexi. Working in the operating room (OR), the team laid out a step-by-step plan for the operation.

“We thought the best way to really solidify the plan was to go through it in rehearsal,” says McDowell. “We walked through every part of the whole procedure with the dolls. The first step was to put them to sleep, and then we went through who would do what first and then the exact sequence. We knew there would be issues along the way, and we talked through what they might be.”

The team worked through the entire procedure from beginning to end and created a written timeline of the anticipated events. Every one of these experienced people was entirely focused on those two dolls—on getting the girls through this not just so they would survive but so they could thrive and enjoy rich, long lives. This was the care team’s mission.

October 9, 2001, dawned gray and raw in Denver. It was a day of drizzle, flurries, and slick roads. At 7:30 a.m. in Denver Children’s Hospital, Jim and Emily prayed over their tiny daughters before the babies were wheeled into the OR, where twenty-two doctors, scrubbed and gowned, stood ready. The physicians in this case, supported by a team of nurses and technicians, shared hundreds of years of clinical experience, yet none had ever attempted—never mind accomplished—the procedure in front of them. What happened in the OR over the next sixteen hours would determine in so many ways the paths of these babies’ and their parents’ lives.

That morning, men and women in scrubs moved purposefully toward the OR. Everyone knew about the momentous event that was about to take place. Surgical team members had arrived for work that morning in the dark, and daylight would come and go while they remained in the OR until night had fallen.

Surgeons often get tense before they go to work, and this is a very good thing. It tends to heighten their senses and sharpen their focus. There was, of course, an added dose of anxiety on this morning.