Healthcare Isn’t ‘Broken’ — It’s Fragmented

A few years ago, I was the oncology doctor on call when I was paged about a new patient in the intensive care unit (ICU). The patient, whom I’ll call Beth, was weak — so weak that first she struggled to stand from a sitting position and later had trouble lifting a cup of tea to her lips. Next, the muscles of her jaw weakened so that chewing solid foods became all but impossible. As the muscles of her eyelids became affected, she concentrated to keep them open. Finally, her diaphragm became too weak to do its job. As she gasped for air in the emergency room, her doctor had no choice. She sedated Beth, inserted a breathing tube down her throat, and connected her to a ventilator. From there Beth was wheeled on a gurney to the ICU.

I was called in because of Beth’s underlying bone cancer that she had been battling for the past 3 years. After several kinds of chemotherapy had failed to slow its growth into Beth’s lungs, her regular oncologist chose to try immunotherapy, a relatively newer class of medications that uses the body’s own immune system to fight cancer. It was just 2 weeks after receiving her first infusion that Beth weakened to the state in which I met her: unconscious, nearly paralyzed, and wholly dependent on life support.

Could the medication have caused this? That was the question posed to me. And more important, could it be reversed?

I searched the medical journals and had a few ideas for how we could treat her. We could thread a large catheter into a vein in Beth’s neck and try to filter the drug out, pulling the harmful agent aside while returning the rest of her blood back to her in a closed loop. We could infuse high doses of intravenous steroids to calm her immune system, which I suspected was overreacting to the drug and counterintuitively hurting her. We could try a medication typically given to help treat other neurologic illnesses that cause weakness. Each treatment carried unique risks, with none guaranteed to work.

But there was one gaping hole underlying all of these possible plans: this was not the first time Beth became paralyzed after receiving immunotherapy.

The oncologist who had given Beth the medication knew paralysis was a possibility. About 1 year earlier, Beth received a similar drug during a clinical trial in Cleveland and became so weak she needed to be hospitalized in the ICU. But the doctor also knew that Beth had recovered completely enough for her to later calmly and decisively agree to give the new medication a try.

“I promised her that if this happened again, we could treat her,” the oncologist told me over the phone. “Find out exactly what they did in Cleveland. Then do that.”

I am no stranger to working under pressure. Being a doctor requires performing effectively under the weight of extremely high stakes. I have led emergency responses to patients whose hearts have stopped pumping and have managed massive transfusions for patients bleeding out. I am accustomed to taking a deep breath, dropping everything else, and getting to work.

I confirmed with Beth’s son, who was also her healthcare proxy, that Beth would want to try everything possible. I told the ICU attending doctor — whose confidence that Beth could get through this flagged with each passing hour — that I needed a little more time.

The clock was ticking, only this time the situation didn’t depend on how well I could do chest compressions or halt a hemorrhage. A life was just as much at stake, but it was based on a far more mundane skill: how quickly I could piece together a medical story.

There is an assumption in an interaction between a doctor and a patient. It’s so basic that it is rarely vocalized: the doctor knows the patient’s story and is making decisions based on readily accessible information. But anyone who has come into contact with the healthcare system intuits an understanding of medical care as fragmented, and this intuition usually manifests as a question: “Don’t my doctors talk to each other?”

From the moment I became a doctor, I prepared to face profound uncertainties because human life is uncertain. I knew that my patients’ symptoms wouldn’t fit textbook definitions. I knew I would puzzle over what to do about test results that landed in gray zones. I knew I’d have to synthesize high volumes of information quickly. I also knew that in the face of incomplete or discordant information, I would still have to make hard choices and act. Grappling with these gray zones was a draw for me: I was motivated to be vigilant about evidence, learn something from every patient, and develop the judgment to try to be right as often as possible.

But over my years in practice, what continues to stun me is how deeply uncertainties in medicine are compounded not only by what is unknowable but by what is simply unavailable. Medical records vanish as patients move from one hospital or doctor’s office to another. Critical data get lost in a muddled electronic health file. Confusing payment practices block patients’ ability to follow up with the same doctor who knows them. The result is that being a doctor means working in a constant state of being partially blindfolded, grasping at bits and pieces of a patient’s narrative to try to craft a coherent whole.

I have learned to live in a different gray zone from the one I expected, often applying my vigilance to patching logistical holes. I spend many off-duty hours sleuthing through disorganized patient charts. I have devised elaborate workarounds to double- and triple-check against gaps. I do these things because of a fundamental belief that the patient’s story matters and that the devil of good medical care is in the details. But I also know that despite our best efforts, patients everywhere still slip through the cracks.

It has become a cliché to say that healthcare is broken. But the truth of this saying runs much deeper than our political and public discourse lets on. My vantage point in the medical trenches has cemented a conviction: fragmentation — or the insertion of gaps into a patient’s story, which blindfolds healthcare workers to the whole — is the single greatest problem underlying American healthcare. While tying together cause and effect is notoriously difficult in a complex field like medicine, fragmentation’s fallout is an incalculable and compounding cascade of problems throughout the entire healthcare system. Blood tests, scans, and even procedures are duplicated both within institutions and from one institution to the next. Vital omissions lead to missed diagnoses and suboptimal treatments.

Then there is wasted labor. In the absence of a system that reliably connects the dots, an enormous burden falls on doctors, patients, and devoted family members, all of us forced to navigate an administrative maze at the expense of focusing on sickness and healing. The data mirror my experiences: doctors spend 2 hours on computer tasks for every 1 hour facing patients. Nearly half of doctors report burnout, with bureaucratic demands listed as the number-one cause (this stayed true both before and during the COVID pandemic). Those saddled with the most clerical tasks are quitting, sacrificing a decade or more of expert training under the crushing weight of not being able to do their work well — work with such incredibly high stakes. Meanwhile, patients squeeze in phone calls while tethered to IV poles, carry around briefcases worth of data, and repeat their medical traumas to dozens of new faces. Those less equipped to keep their story lines straight undeniably receive worse care.

The story of how we got here is complicated. It’s a story of misaligned incentives and unintended consequences. But the conclusion is not complicated: our current healthcare system has failed. The question now is, how do we dig ourselves out?

Ilana Yurkiewicz, MD, is an oncologist, internal medicine physician, and clinical assistant professor at Stanford University. This piece is an excerpt adapted from her new book, Fragmented: A Doctor’s Quest to Piece Together American Health Care.