I watched, horror-stricken and helpless, as my husband tried very hard to die.
He was not yet 50, but during one desperate winter night in a small hospital’s intensive care unit, I held his hand as, in staccato bursts between gasps of breath, he planned his funeral, grieved for the future he would not see with our two young boys, and implored me to remarry.
We were two physicians, caught in a nightmare of impotence against the machinery of medicine.
We had been fighting that hulking machine for two months. My husband’s well-managed heart condition, which he was born with, deteriorated gradually at first. In the summer it was an annoying flutter. He walked more slowly and tired more easily.
In the fall, he saw a cardiologist and went to the emergency room. He had two procedures, which were not finished because of concerns about a blood clot. He took new medicines and blood thinners. He slept on one pillow, then two, then a third when he could no longer catch his breath lying flat in bed.
During those months, he asked to speak with the doctors taking care of him. Instead, receptionists and nurses returned his calls. He could not get answers. He could not get their attention. He could not convey his fear about how quickly his symptoms worsened. He was deteriorating by the month, then by the week, then by the day. He could not get one of the specialists to listen, and we could not sort out which one of the group was responsible for his care.
When he was too short of breath to walk 100 yards from our garage into our house, he was hospitalized. I was relieved. Finally, we would get answers and get this under control!
But the following morning, when I asked what the next steps of the plan were if the current approach did not work, I was met with defensiveness. As the clinicians rotated in and out of our lives over the course of a long weekend, as interchangeable cogs in the hospital machinery, their faces changed but the withdrawn hostility was surprisingly consistent.
Five physicians saw him for short periods of time during that four-day period. Each one just tried to keep the situation from deteriorating too far during his or her shift, then handed him off to the next in line.
No one had a clear strategy beyond 24 hours. No one had any idea of who my husband had been before this crisis. So they had no sense of how far he had deviated from his baseline, and how very ill he had become, very quickly. Neither did they ask either of us to explain what he was like before, or what we expected.
They scanned the electronic medical record, but with each passing day, and each slip in his status, that data drew an increasingly distorted picture, suggesting someone who was chronically ill and low functioning. As the lens became more astigmatic, the urgency to fully correct his condition faded. "Good enough" became a real goal.
With each hand-off, we struggled to explain the alarming deviation, at first parsing words carefully and in measured tones, so as not to alienate the teams who could not see what we saw. At the peak of the crisis, as my husband was struggling for every breath in then intensive care unit, I grew shrill and strident, desperate to instill in them the urgency we felt. But it seemed to shut them down completely.
In the end, it was my desperate text to a colleague at another hospital that got my husband a bed in their ICU. I was worried he would not survive another night at the local hospital, or would suffer irreversible injuries, but the ambulance service contracted with their network was not staffed that night.
I called risk management, the department that tries to ensure safety and keep the hospital from being sued, to advocate for using a different ambulance service. They finally agreed and just before midnight, he was on his way.
From the moment we arrived at the second hospital, the experience was dramatically different. He was cared for in a tiny, windowless room that hadn’t been renovated in too long, but with everything that mattered: a nurse who almost never left his bedside; a care team that showed up, in person, with a sense of urgency about his condition and new ideas about medications to try; and clinicians who were hungry to know not only who he was in the moment, but who he had been before he got sick, so they could gauge their goals for treatment.
Within eight hours, his condition was dramatically better, and 10 days later, he walked out almost as well as he had been six months before.
All this happened three years ago. During the course of my husband’s two months of outpatient care, and four days in the local ICU, I realized that the physicians were shockingly absent, and the nurses only a little less so. They had withdrawn into the recesses of the system, remote from patients and families, working at the top of their billing capacity, but walled off from those they were caring for by phone trees and receptionists playing a potentially deadly game of “operator.”
The system had bound the physicians so tightly with scheduling control, data and metrics, policies and punishments that they, too, could barely breathe.
Blaming the medical staff in this situation would be easy, but misplaced. It is the system, designed and overseen largely by non-clinicians, that is to blame.
At that small hospital, the specialists treating my husband had recently transitioned from private practice to being employees of a health system. The system had bound the physicians so tightly with scheduling control, data and metrics, policies and punishments that they, too, could barely breathe. They had almost no control over their patient interactions or their referral options.
They were bound so tightly, in fact, that they stopped struggling because it was futile. It was in part about being too busy; it was also about being shackled, straitjacketed and hamstrung. They knew what patients needed, but did not have the latitude or the autonomy to get it. They looked beaten, distant, as if they had given up, disengaged, stopped empathizing, depersonalized, as if they felt that they couldn’t accomplish much, so why even bother to try?
They were the first stark example I encountered of the hazard that moral injury represents for patients.
Technically, their care was good enough not to get sued. But it was not one iota, or one penny, better than that. And my thoughts turned to my neighbors in our farming community: If two physicians have such a near miss, what happens to the other 325 million Americans unprepared to be intense advocates?
This narrow escape made it clear that the impediments to excellent care are felt keenly on both sides of the clinical encounter: The wellness of clinicians — the autonomy and latitude of practice that protect against moral injury — has a profound impact on everyone around them, and changes are essential to improving
health care for all of us.
What should those changes be? This I know: We need to start with honesty, and with clarity that what many are now calling "burnout" is actually moral injury, and it is the real epidemic in medicine today.
Wendy Dean, M.D., is a psychiatrist and co-founder of The Moral Injury of Healthcare, LLC, a non-profit focused on addressing the crisis of clinician distress.
Editor's note: Wendy Dean and colleagues will speak about "Moral Injury In Health Care" at WBUR's CitySpace on Feb. 10. Tickets are here. To share a story with her team, please send it to email@example.com.