I had two family experiences with the healthcare system that taught me the importance of listening to what patients want and taking care of the whole person and their family. These experiences changed my life and how I do my work.
No One Is Free From Harm: Doctor who broke hospital rules offered a lasting lesson in patient-centered care
I'm the oldest of nine children in a big Irish family. When I was a young nurse, going back a ways, my brother Johnny, a wonderful kid, was diagnosed with Hodgkin's disease. While he was going through treatment, he would come up to my apartment and tell me, “I'm not going to make it.” I thought my job was to give him encouragement to go through more chemo or radiation.
But he was telling he really wasn't going to make it, and I didn't know how to deal with that.
Some time later, Johnny was in the hospital. He weighed 90 pounds and was close to death. It was hard for him and the family in the hospital because the visiting hours were very limited and the rules were very restrictive.
A group of physicians doing rounds came into his hospital room, and they were talking over his head. When they left, one of the doctors came back into the room, and Johnny told him he wanted to go home. The doctor took my jacket, picked him up and carried him in the jacket out to my car, breaking all the rules.
When I got my brother home, I learned an amazing life lesson. He said he wanted to live a few weeks more, until he turned 21. Those last few weeks were amazing. Every one of the kids had a role to play in taking care of him. My youngest sister put cream on his feet. His friends came over to visit. Everyone was contributing to his life. We all faced death openly and together.
That's when I realized my job wasn't only to take care of the patient in front of me but to think about improving the system.
I learned that breaking the rules is sometimes the right thing to do, and we have to face death in an entirely different way. I believe everyone should have the kind of death my brother had. And this all happened because of that physician and his courage.
In February, the Institute for Healthcare Improvement ran its third annual “breaking the rules” week, with organizations all around the world telling staff they needed to break rules. Some of those rules are just habits, myth or lore.
My family had a somewhat similar experience a few years ago, when my mother, Patricia McEachern, had a stroke and was admitted to the hospital ICU. Based on her brain scans, she had no chance of recovery. A physician called my large family into a big meeting room, and a nurse joined us. The doctor was amazing. He asked us to tell him about our mother, and for an hour we told stories. The doctor and the nurse were laughing and crying along with us.
Another physician then came in and talked about the clinical aspects, saying they could put her on a feeding tube and find a nursing home where she could be on a ventilator. I thought, there's one doctor for her body and one for her soul, and we need to put these two together.
We brought Mom home and had five beautiful days with her, with all the grandchildren and everyone taking care of her.
Because of these personal experiences, when I was reading a 2012 New England Journal of Medicine article by Barry and Edgman-Levitan on shared decisionmaking, one sentence really resonated with me. It said clinicians shouldn't only ask patients, “What's the matter?” but should also ask, “What matters to you?”
I was giving a plenary talk in Europe to about 3,000 people, and I said you need to ask patients this second question. Some time later, a nurse, Jen Rodgers, who had been in the audience, told me she went back to work at her pediatric hospital in Scotland and asked a 7-year-old autistic girl who didn't speak, named Kendra, to draw pictures of what mattered to her.
Kendra's pictures were amazing. They said things like, “I don't like medicine by mouth,” “I say hi by pulling your hair,” and “I like noisy toys.”
When her father, her only caregiver, had to be hospitalized, Kendra was alone and unable to communicate in the usual ways. But because of those pictures, the hospital staff were able to take care of her, without sedation or restraints. They saw her through a different lens—the lens of what matters to her.
Now in 30 countries around the world every June 6 for the past three years, people in healthcare institutions hold a “What Matters to You” day, all because of Jen Rodgers and a Norwegian nurse named Anders Vege, who saw the potential and built the momentum for global change. Some U.S. hospitals are picking it up. It's making a difference not only for patients and families but in helping staff find more joy in work.
It requires a brave individual to see the whole person. I believe we're way beyond having individual practitioners or specialists taking care of body parts. We need to function in full teams, sharing knowledge and including the patient and family on that team.
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