No One Is Free From Harm: Listening (and not listening) to the patient at the end of life

"What better time than when people are sick and scared to be more focused on listening to them?"

–Mark Ganz

Two months after I was named CEO of my company in 2004, my father, Richard, was diagnosed with multiple myeloma. He was a well-known and well-liked family physician in Spokane.

My dad worked really hard to be a healer, not just a curer. He understood you needed to have a deep relationship with your patients, really get to know them and really get to know their families.

That's why I'm so focused and relentless in my views that healthcare is about individuals and how well you create a unique experience and engagement with them in health and sickness. Healthcare has a long way to go on that.

At the hospital, my dad got very solid care in the ICU. But once he got to the regular floor of the hospital, it wasn't so good because it wasn't staffed adequately. He had to wait 30 or 40 minutes for basic things like help going to the bathroom, which was a painful and inhumane experience.

So we hired a caregiver to be there when we couldn't be there. The vast majority of Americans who face the same situation can't afford that. Family members have to be there 24/7 or else their loved one will just get what the hospital is willing to give them.

The very best care my dad got in the entire time of treatment for his cancer was in the last three days of his life. He was in hospice, at home, with a bed set up in our dining room with a beautiful view of the valley.

His death was the most spiritually enriching experience of my life, as painful as it was. And every one of my family members says the same thing.

It was made possible not just by the family dynamic and sense of faith but by the unbelievable hospice physicians and nurses. Talk about healers! Why shouldn't death be a healing experience?

If the culture of healthcare and medicine were more focused on creating a better balance between pursuing a cure and healing, I think the American experience of healthcare would be transformed.

Five years later, my mother, Doris, had a very different experience. While my dad's story was more profoundly inspiring to my career, my mother's story is more of a cautionary tale of how far we have yet to go.

My mother had congestive heart failure. She wanted to live as fully as possible until the moment she knew her heart would stop for the last time. She was very clear about having a DNR order.

Ganz's family. Mark is sitting on his father's lap at right. His mother is on the left.

She was in the hospital for other symptoms when her heart stopped. Despite the DNR order, the team did not honor her wishes.

It was painful, but it speaks of the culture in medicine that death isn't a natural part of the cycle of life but rather a failure of the doctors if someone dies on their shift. This is part of what fuels my desire that patients be listened to and respected.

The doctors' notion was to keep her alive at all costs, rather than recognizing and respecting that she would die on her own terms and letting nature takes its course.

I've asked a lot of people I know, when they've gone through a difficult illness, “Has anyone asked you what really matters to you and how you want to do it?” All too often the answer is no. Instead, they get put on a roller coaster. Because they're scared and feel out of their depth, they just kind of let the provider tell them how it's going to be.

I was on stage with the CEO of an academic medical center, and I said we need to be more focused on the consumer. He responded by saying his center is getting more consumer-oriented and that it gives patients a contract. It tells them what the center expects of them in terms of rules, and what the center will do for them.

He made my point. That's not consumer-centered thinking. It's saying here's what you must do and here's what we'll do, rather than saying we're in service to you. Maybe you don't want your food at 6 p.m. But there's no curiosity around that yet.

I do see an evolution. But we still have a long way to go. We're more about the rules than stopping and saying, “What matters to you and how can we help?”

What better time than when people are sick and scared to be more focused on listening to them?

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