As the mother of a daughter who died needlessly, I have earned, in the worst way possible, the right to demand that patients be heard.
My daughter, Talia Goldenberg, met life’s challenges head-on. No conversation was too big for her. But Talia was betrayed by her medical providers, and the job at hand — making hospitals safe for patients — needs much work. I hear Talia in my head, urging me to push this conversation forward so that nobody else dies the way she did. I am determined to be her voice.
The Seattle Times special report, Quantity of Care, has shaken Seattle’s medical community to its core. I have been shocked to learn about the degree of willful negligence in the system, the ugliness of an administration and group of physicians who allowed an environment of fear, abuse and compromised patient safety to go unchecked for years.
But the recent resignation of two people — a neurosurgeon and a CEO — alone does not fix the system. We want to believe that cleaning house will mean patients are safe again. Everyone just wants to get back to business as usual.
Unfortunately, business as usual is what failed Talia. There is grave danger in focusing so narrowly that we scapegoat the villains and miss a critical opportunity to examine what is wrong systemically. As the wife of a physician (who witnessed Talia’s mistreatment) and the mother of a daughter who died needlessly, I have earned, in the worst way possible, the right to weigh in on the subject.
Medical error is the third leading cause of death in America. The problem is not limited to one hospital or one community. Patients are dying, yet the medical establishment fails to address this issue with the sense of urgency it deserves. The current upheaval in Seattle provides an opportunity to look deeply at medical error and find solutions.
There is a common thread linking what can and does go wrong in hospitals, and that is hubris: an arrogance that allows indifference, a disregard of patients. Physicians can be nice, dedicated and skilled, yet still act with hubris. We’ve read recently about the arrogance of power run amok, but hubris can also be subtle — and deadly, here’s how:
‘I know best’
A SEATTLE TIMES SPECIAL REPORT
- Swedish CEO Tony Armada resigns
- Top Swedish neurosurgeon resigns
- U.S. Attorney’s Office launches investigation
- Providence CEO Rod Hochman apologizes
Physicians have knowledge that patients necessarily rely on. But patients also have information about themselves that matters in any doctor-patient relationship. Patients are not irrelevant to their own process! Too often, doctors form hypotheses based on their own biased assumptions, failing to incorporate what their patients tell them and the signs and symptoms their patients exhibit. Talia had many doctors during her hospitalization — surgeons, anesthesiologists, critical-care physicians, code-team doctors — and each failed to see, hear, believe or act on what was actually happening. This, despite the fact that Talia’s father, who is a physician, was warning them that they needed to be prepared because Talia’s airway was at risk of occluding.
Even when doctors believe their decisions about patients are correct, they need to plan for the possibility that they could be wrong. By considering a broader range of possibilities, doctors increase the likelihood that they will not miss anything. Then, they must continuously re-evaluate their conclusions and the effects of their treatment as they proceed with their plans. Although Talia was in respiratory distress from the time she awoke after surgery, not a single physician adjusted their hypothesis that Talia was a healthy 23-year-old who was just anxious. Each acted from the premise that Talia simply had the sensation of difficulty breathing, not that her breathing was actually compromised. Remarkably, accounting only for the possibility that they were right — when they were wrong — no physician examined Talia’s airway or her dislocated jaw in the hours leading up to her airway occlusion. Their hubris cost Talia her life.
Prioritizing doctors, not patients
The system caters to physicians, protecting their time and scheduling needs. A hospitalized patient may only get 90 seconds with a hurried doctor in a 24-hour cycle. Though doctors have tight schedules, patients’ complications can’t be scheduled. It’s easy to believe everything is going well when physicians spend virtually no time with their patients. Doctors themselves are not present to continuously re-evaluate patients, making communication between doctors and support staff critical to patient safety, especially because nurses and staff are the ones who see patients throughout the day and night. Physicians must be receptive to hearing what patients are experiencing, either directly or through staff.
Patients are powerless
Hospitals boast patient-centered care, but in reality patients are powerless. They can participate in their care by consenting to or refusing treatment, and, in some hospitals, by calling a rapid-response team in a crisis. However, care that relies on interactions between providers and patients is often unpredictable and inadequate, and patients are not given the power to participate in or alter the course of their care. Patients who then advocate for their care too forcefully risk alienating providers on whom they are dependent.
Patients only have access to doctors through gatekeepers — the nurses — who may not feel safe “bothering” doctors about a patient. Doctors must empower nurses to communicate with them at any point, even if it involves questioning doctors’ assumptions. Models built on fear rather than collaboration are dangerous for the patient.
After the recent shake-up in hospital leadership in Seattle, a hospital CEO wrote, “it is clear to me that caregivers … have not always felt heard — and this will change.” It’s a safe bet that patients have not felt heard, either — and that must change, too. We need providers to examine the ways they relate to patients and build a system in which patients and their input are considered essential.
That will save some other mother from channeling her dead daughter’s voice to right some very real wrongs.