Every time I see a new medical practioner, even for something as quotidian as a strep test, I have to pause and recount the worst experiences of my life. “Any surgical history?” the CVS nurse says in a polite but bored voice, and I have to retell the story of how we lost our child Camillian in an ectopic pregnancy. I have to spell the slightly less common surgical procedure I had — they do not ask me to spell Camillian’s name.

No matter how many visits I make, I get asked every time, which makes me wonder what exactly is being stored on the computer and why. In Fragmented, Ilana Yurkiewicz, a physician with a specialty in oncology, pulls aside the curtain. America’s scattered, ad hoc approach to care is nearly as frustrating for my physicians as it is for me. Even with piles of paperwork and dozens of check boxes in electronic medical records, information still gets lost between patient and physician. Sometimes, that missing data kills.

The range of treatments that doctors can offer has gotten more and more advanced. Robotic suturing tools allow surgeons to conduct delicate surgery through minimally invasive laparoscopic procedures. CAR T-cell immunotherapy can be precisely tuned for individual cancers, teaching patients’ immune systems to kill their tumors. But when it comes to medical record-keeping and continuity of care, many doctors like Yurkiewicz find they’re operating in an era of oral history or as archaeologists.

In her practice, Yurkiewicz reconstructs a patient’s medical history as though she were piecing together potsherds at a dig site. She asks other doctors to mail her CD-ROMs of medical images (and then borrows a disc drive to be able to view them). She pores over pages of blurry, out-of-order faxed records. And often, she turns to the patient as her co-investigator, asking questions such as, “What did the testing show? Was it a loud machine where you lie flat, or did someone use a probe coated with cold gel?”

Yurkiewicz stepped away from a conventional career in cancer care and hematology to become the co-director of Stanford’s Primary Care for Cancer Survivorship program. She had seen patient after patient go through initial rounds of cancer treatment under her care, and then lose ground once they were no longer under her supervision. Some uninsured or underinsured patients couldn’t afford continuing care once they passed through their initial emergency. But even for patients with insurance, leaving the oncology program and active treatment often meant being left adrift. Some had no primary physician to help them manage care, and others had general practitioners who had no experience with cancer follow-up and felt unprepared to manage the complexities of surveillance and recovery.

Yurkiewicz had to found a new program to meet her patients’ basic needs. Her book makes the case against our current standards of care by telling the stories of her patients, some of whom go to extraordinary lengths to take up the work their doctors and hospitals have sloughed off. One patient shows up at Yurkiewicz’s office with a set of color-coded binders, supplying the details of her medical history that kept getting lost between doctors. The wife of another patient essentially works as an unpaid secretarial assistant to each of her husband’s doctors, helping them coordinate records and care. She helps save her husband Michael’s life when the doctors fall short.

Michael’s doctors have medical expertise, but it’s his wife who’s an expert on Michael. It’s she who is the first to realize that his new provider didn’t follow his discharge treatment protocol and that neglecting to properly administer his sodium infusions is killing him. But it’s hard for her to be heard — when she brings up her concerns, she’s initially told, “This is just the progression of his illness. He’s a sick person, you know.”

For patients who are already sick, frail, or old, it takes someone with a sustained presence to be able to say, “This is different.” That role frequently falls to a family member, a close friend, or the patient himself. One in four Americans does not have a primary-care doctor, and even those who have seen one, may find that the doctor lacks the context or time needed to help manage complex care.

When patients shuffle between specialists, they pay a serious price. One in five patients suffers an adverse event within three weeks of hospital discharge, and about half of those complications are entirely preventable. Part of Yurkiewicz’s prescription is a bigger role and better payment for primary care. But she also sees how specialists are overworked and stretched too thin, unable to give patients the full benefit of their expertise.

Medical residents work shifts of up to 28 hours, with a full day on their feet doing direct patient care and four additional hours for managing transition of care to the next exhausted team. Doctors’ formation begins with pushing themselves past human limits and endlessly failing themselves and their patients.

It’s not only medicine that attempts to cover gaps in staffing by asking the impossible. As the New York Times recently documented, a shortage of air-traffic controllers has been papered over with mandatory overtime and maddening shift schedules. Air-traffic controllers work a schedule they call “the rattler”, as they constantly shift their duty hours and are expected to squeeze in sleep in the eight afternoon hours they’re allotted between back-to-back shifts. However managers schedule to spread coverage, nearly every airport in America is understaffed. The result is sometimes multiple close calls for planes in a single week.

A close call for a plane triggers an FAA report, but for passengers, the last-minute save means the system looks safe so long as a deadly collision is avoided. In a hospital, it’s easier for an error to pass unnoticed and go unreported. When a patient doesn’t get better because part of his care was neglected, friends and family may hear, as Michael’s wife did, that the responsibility lies with him. He just didn’t fight hard enough, he reached the end of his strength, says a doctor who never got the chance to look at the prior doctor’s note on a medication contraindication.

For Yurkiewicz, ultimately the patient has to be a partner. As she tells her staff, “the patient is the only guaranteed source of continuity in their own care.” She takes more time with her patients than the insurance-reimbursable 15 minutes, to prepare them to be living medical charts. In her estimation, half of her primary-care work happens outside of the patient’s room, all officially uncompensated. She has the patients repeat back what she’s telling them; she waits for them to take notes; she makes sure they’re prepared to advocate for themselves in her absence.

Yurkiewicz is working against the grain of American health care, in which patients are assumed to be consumers, not managers of it. We’re barely even customers, since for Americans with employee-sponsored health insurance, an HR manager picks the insurer, and the insurer chooses which doctors they can see. There’s little possibility of exercising consumer power.

But other countries have offered more respect and power to patients. Estonia, for example, has mandated that all health-care providers use compatible electronic medical-record systems — no need for paper fax printouts or CDs stuck in the mail. The United States has attempted to mandate interoperability, but it has left out one key component of Estonia’s system.

In Estonia, the patient, not the doctor, is the custodian of the medical chart. An Estonian citizen grants access to her doctors (and can revoke it when she leaves a practice), but the chart belongs to her. She can also give a spouse or other family member full or partial access, to help them advocate for her when she’s hospitalized. There’s never a need to hassle previous doctors for information (or pay for your own records, as many American doctors demand).

Yurkiewicz’s book is a detailed, moving portrait of what medicine could look like, but few doctors have her opportunity to build a countercultural clinic. For a policy wonk, her book is a guide to the barriers that need to be removed to allow doctors to heal. For a physician, the book might be an inducement to leave the profession as conventionally practiced rather than continue to work in a system that is built to fail.

For a patient or a caregiver, it’s a self-defense guide that belongs on the shelf next to Marshall Allen’s guide to contesting medical billing, Never Pay the First Bill. At our most vulnerable moments, our medical system makes it impossible to operate from a posture of trust. Patients have to contest billing errors, keep a parallel chart, and brief their physicians, no matter how sick they are. Their lives may depend on doing the professional work that’s been unfairly delegated to them.