For the healthcare community, I would say try to listen differently to patients if they think something is wrong.
I’ve had two experiences with medical errors, 20 years apart, that almost killed me. The difference now is providers are acknowledging these things. Before it was deny and defend.
Ironically, the same month that To Err is Human came out in 1999, I was having a right ankle replacement at a prominent Boston hospital. The anesthesiologist and I decided to use a peripheral nerve block behind the knee for post-operative pain management.
They started to inject the medication, Bupivacaine. Within a minute I had a grand mal seizure followed by full cardiac arrest. I flatlined for 15 minutes.
They rushed me in for a cardiac bypass and opened my chest within 35 minutes. My husband and my kids were devastated when they got the call from the surgeon saying they’d have to crack my chest.
I was in the hospital for 10 days. I am one of the lucky ones. Not everyone survives that kind of event.
They said I had an allergic reaction to the anesthesia, but I didn’t get any information or support.
I found out the medication had gone into my vascular system instead of into my nerves. The doctors decided it was a 1 in a million event.
What struck me was the impact on my family and my care providers. I later spoke with my surgeon, who was crying and saying I was a miracle from God. I eventually talked with the anesthesiologist and asked him how he was doing, and found out he wasn’t doing so well.
I tried to reach out to the hospital. It took three years before they’d meet with me. I think they thought I’d sue them. I just wanted to help improve the systems that had not done well by me, my family or the anesthesiologist, who was just as cut off from support as I was.
That's when I started doing this work of helping healthcare organizations build support for staff and clinicians, and setting up peer support networks for patients and families.
The second event was this past July, when I had an emergency hernia repair at the same hospital. I went back to the ER three days later with fluid leaking from my wound. They sent me home and told me it was normal, even though I knew from previous hernia repairs that it was not normal.
I returned to the ER one week after discharge, with fever and pain. The surgical resident said it looked like a superficial infection and they’d give me antibiotics and send me home.
My cousin, who’s a nurse and was with me, said I was really sick and I wasn’t leaving. Then the resident came back and agreed I was really sick and admitted me to the ICU.
It turned out that during the hernia repair, they had sliced my stomach and the contents were leaking into my abdomen. I had what they called a septic abdomen. They had to load me up with five different antibiotics and put a drain in before they could go in and take everything out.
My husband and one of my daughters were retriggered emotionally, remembering what had happened 20 years before.
I was out of work, without pay, for 2½ months.
I think the hospital has responded well. A patient safety officer came to my room. They reached out to me to set up a time to meet. My husband and I will meet with a couple of the doctors, the patient safety officer, and the patient relations person. I’ll listen to what they have to say.
But my family is angry. They were angry 20 years ago, too.
What lessons do I draw from these experiences? For the healthcare community, I would say try to listen to patients if they think something is wrong.
Also, we need to provide support to providers. If you are my doctor and you are compromised because you lost a patient, I don’t want to be the next patient. I want to make sure you are emotionally, physically and spiritually fit.
For patients and families, don’t assume that because you’re going to one of the best hospitals that you’ll be safe. Have a loved one there to speak up for you.
And for those who have experienced medical harm, I would encourage them to talk to someone who’s been in the same situation.
If I had cancer, I would have been inundated with support. But when something goes wrong with medical care, it can be just as devastating. We need to help normalize these reactions and support these people’s needs, so they aren’t traumatized the next time they go to the hospital.
The mere fact that I’m talking to you now is a miracle. When you survive something like this, you want to make sure no one else goes through it again.