Maureen Bisognano, why did you choose to work in health care improvement?

Maureen Bisognano, President & CEO, Institute for Healthcare Improvement

I wanted to tell you why I care so much about improvement. I wanted to tell you why I’m so passionate about the work that we do here. And it’s a story. It’s a personal story. It’s about my brother Johnny.

I’m the oldest of nine children — a big Irish family — and we’re all very close, but my brother was really a special kid. He was handsome, and smart, and sociable, and warm, and nice. He was hugely successful in school, and he even turned out to be the ball boy for the Boston Celtics. So here he is [in the photo], with one of the championship teams in Boston. He was a tremendous guy to be with.

When he was 17, though, he was diagnosed with Hodgkin’s Disease. He went through lots of treatments, and I was there with him, as was the rest of the family, throughout his care. I remember, though, as he got more and more sick, that he started coming up to my apartment, and he would say “Maureen, I’m not going to make it.” And I though my job was to give him hope and optimism and encouragement. I thought my job was to talk about the next treatment — the next radiation treatment, or the next round of chemotherapy. I found that I was always offering him this hope and optimism, without really understanding what he was thinking.

And so one day, I learned an incredible lesson when he was in the hospital. It was a regular day when all of his physicians came in and were making rounds and walking around talking over his bed about his care, and then they all left, and one physician came back in. He was a radiation oncologist, and he came back into the room, and he said to my brother, “Johnny, what do you want?” And my brother said, “I want to go home.”

Without saying a word, the physician came over, and he took my jacket off me, and he went and he put it over my brother, and he picked him up, and he carried him to my car. I know he broke every rule in the hospital. I know nurses were chasing after him, coming down the hall, but he knew that my brother was at the end of his life, and he knew that that question was the most important question that he could ask. “What do you want?”

So when we got my brother home, I said to him the same thing. “Johnny, what do you want?” And he said, “I want to be 21.” This was a few days before his birthday. My brother turned 21 just a couple of weeks after I brought him home, on November 25th, and he died on December 1st. And I will always be grateful to that physician.

For all these years, for 38 years, I’ve been carrying this picture around in my purse every single day, looking at my brother. And looking at how thin and sick he was, and realizing what a difference that physician made because for those weeks that he was home, he had friends and family. We were able to laugh. We were able to look back and enjoy every minute of those weeks.

If he were still in the hospital, which is what would have happened without that physician’s courage, I know that we would have had visiting hours, and the little kids in the family wouldn’t have been able to access him. His friends wouldn’t have been able to come and celebrate in a group, and my brother would have died a very different death. So that physician told me that, one, we need to understand what matters to you. Asking that one question, “What matters to you? What do you want?” made such a difference in his life. And, then, we really need to understand the constraints and the rules and really think about, “How do we use improvement to make every day special for every patient?”