Dealing with doctors and hospitals can be a life-affirming, life-saving relief. We have all had that wonderful doctor who listened, who took that extra time with us or our loved one, and who very well may have saved our life. But many of us, far, far too many of us, have also had a very different experience: doctors who do not listen, who ignore crucial information, who out of arrogance or incompetence or some lethal combination of both commit medical errors with deadly results.
When you are a family member who has lived through this experience – of trusting doctors, of doing exactly what each one tells you to do and yet, somehow, a loved one dies an utterly preventable death – you go over and over in your head what went wrong. You know that you are not a doctor, that you obeyed everything the experts told you was medically right to do for your loved one, and yet somehow it all went terribly, terribly wrong. They are gone and you are left, stunned, in agony.
As someone who has lived through this, I was shocked and deeply moved to read a recent essay by Dr. Jonathan R. Welch, who teaches at Harvard Medical School and is an emergency physician at Brigham and Women's Hospital in Boston.
In this essay, As She Lay Dying: How I Fought To Stop Medical Errors From Killing My Mom, Dr. Welch offers a painfully honest account of how his beloved mother died an unnecessary and preventable death even though he was right there – not as her doctor but as her son. She developed an infection and time after time, opportunities to save her were missed by multiple medical professionals over several days. He does not identify the hospital, which was out of state. As her son watched:
"I leaned over and took a look at my mother's medical chart. Some vital signs had been infrequently recorded. And I saw a clear, terrifying picture. My mother's blood pressure had crashed during the day. Her numbers now were half of what they'd been at her arrival in the emergency department. My mother's emergency physician and oncologist had done few if any of the essential and obvious interventions needed to save her life. The nurse seemed calm, as if everything was normal.
What was their problem? Was I missing something? I felt trapped in an alternate reality where the medical rules were the opposite of everything I'd learned and practiced…I wish I'd done more at that point — insisted on waking both my mother's oncologist and the hospital's intensive-care doctor at home, demanded that they come to the hospital. Instead, by that point I felt lost and powerless.
I was losing my own confidence as a doctor, becoming instead the helpless son."
Repeated medical errors
Having been a helpless sister, I can tell you that I read Dr. Welch's astonishing essay with relief and deep horror. The relief comes from the idea that if a Harvard-trained emergency room doctor can feel helpless while the system – and doctors and nurses within it – kill his mother, and that even someone as skilled as Welch could not prevent this catastrophe, then how could any of us civilians feel we could have done anything, either?
I've listened to and read countless stories in grief groups where daughters, sons, mothers, fathers, siblings, grandchildren, husbands, wives (all deeply traumatized by a profound loss), blame themselves for not doing more. If only they'd called so and so or gotten a fourth opinion or done research and found that one test that might have revealed blah blah blah….
We all want quality patient care
I always remind us – we are not doctors; we are not trained for this; how can you hold yourself to that standard? And yet they do. So to all of you out there who have lost a loved one to a medical error, please, read Dr. Welch's essay and let yourself off the hook.
Who should be on the hook? The medical community. This is unacceptable. If one of your own doctors, trained at the best institutions, can be so easily marginalized and silenced, something is deeply wrong. I know the medical community has worked very hard to change the culture of silence and to set up far more accountability and opportunities to learn from their mistakes. More must be done. In his work now, Dr. Welch advocates for a wide range of reforms and has examples of programs that have made dramatic improvements. I wish the medical establishment would hear him, too.
Dr. Welch chose not to sue, not to become another malpractice case. Instead, he is working to change the system from within.
In future posts I will share his and other experts' advice on how patients and their families can be strong advocates, too.