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Illness Sparks a Quest to Transform End-of-Life Care

Analysis  |  By Philip Betbeze  
   September 22, 2016

After a health system executive was diagnosed with cancer, her CEO tasked her with creating a systemwide initiative to transform end-of-life care.

Melissa Pherrell Phipps got a breast cancer diagnosis around Thanksgiving in 2010.

Predictably, it turned her world upside down. Doctors told her it was urgent to begin treatment as soon as possible, as the cancer could spread. They scheduled her bilateral mastectomy for the second week of December.

It was the time of year that made Phipps, then assistant general counsel for Novant Health, a 15-hospital health system based in Winston-Salem, NC, think twice. And though she's now cancer-free, at the time, uncertainty and fear ruled.

"From a medical perspective, you can't get any better than that," she says, of the quick diagnosis and treatment plan. "But when I hung up the phone, I started crying as I thought of all the things I hadn't done.

"I had four young children and when you're diagnosed with cancer, there's a whole lot of unknowns until you have your surgery. In my mind, not knowing what I didn't know, I was thinking: What if this is my last Christmas? I didn't want to miss it in the hospital."

She didn't. She rescheduled the surgery for after the first of the year. But she says she was lucky that she was in a position to make that decision herself. Many patients, especially near the end of their lives, are not.

Her passion had always been patient rights and advocacy work. As a Novant attorney, she spent a lot of time and effort in the end-of-life arena, navigating disputes among family members when treatment decisions needed to be made for incapacitated patients.


Despite New Funding, Few Docs Discuss Advanced Care Planning


Following her own cancer diagnosis, however, Phipps had a new sense of purpose around better adoption and use of advanced directives. So did Novant President and CEO Carl Amato, but he told her she was thinking too small.

In 2013, instead of revamping the system's approach to advanced directives, he empowered her to create a plan to transform end-of-life care. I spoke with Phipps recently about the progress that has been made since then. The following has been lightly edited.

HealthLeaders: What was the biggest professional revelation from your experience with cancer?

Phipps: If I had been asked then what I was most afraid of, it would have been that that this is my last Christmas. I wanted to be fully present for my family. The trade-off was that if we postponed, my cancer could spread, but it was worth it to me.

When you get a diagnosis like this, you can get swept down the river of the next medical process. Life can get hijacked and that often really compounds the suffering. The more we can help our clinical team understand that aspect of it, and allow patients to partner with us, for me that's the primary goal of this multi-year effort.

HealthLeaders: Your CEO gave you your assignment in January 2013. What's been accomplished since then?

Phipps: We're not there yet, but the goal is to understand patients' wishes about the extent of care they want under certain circumstances. We'd like for every healthy adult to be asked at a wellness visit who you trust to speak for you if you're unable to make your own medical decisions.

For most people, that's a pretty easy answer, and that goes into advance planning directives, which we want our patients to consider when they are not in a time of crisis.


End-of-Life Care in Hospitals Has a Long Way to Go


We're trying to shift our culture so the right questions are asked much earlier, and focusing on patient goals rather than asking nonclinical people questions about specific medical treatments that they don't really understand at a time when they're stressed or scared.

HealthLeaders: On some level, this involves retraining the staff to help put them in the patient's place. How have you gotten them to understand how important this is?

Phipps: At first we pulled together a multidisciplinary team to tackle the problem. We created Choices and Champions as an internal brand, and we focused on hiring people to start doing some of the work. We hired a corporate director for palliative care, one for hospice, and a corporate manager for advanced planning.

We spent a lot of time building the infrastructure. In 2014 we started doing pilots. We were training folks in a medical clinic, pushing for changes in our EMR because it was difficult to find and store these advanced directives.

We started working intensively with hospitalists. But we learned key lessons that caused us to hit the pause button. For instance, we had to address a huge misunderstanding about what DNR means. We had a lot of educating to do.

HealthLeaders: You said you learned this was more of a cultural issue that an operational one. What do you mean?

Phipps: If folks don't understand the why behind what we're doing, it will never work. In 2015, through an invitational program, we offered the book, "Being Mortal" (by Atul Gawande, MD) to our 26,000 team members. More than 8,500 people participated. It really created a lot of dialog and resonated with our docs. Gawande came to speak and engage with our team members.

We also created an educational course for our nurses called Mastering Conversations that Matter.

We're trying to culturally move from a place of awareness to engagement and adoption. We have other education modules to equip our team members as to why it's relevant, and to do their own advance care planning. We have to do that first before we launch it with our patients.

It's a long-term project, but by 2017 and 2018, we'll see a lot of movement on the patient side.

HealthLeaders: Is there a financial component to the urgency around this effort?

Phipps: This may surprise you, but that is not a part of what is driving me or what I'm using to build the strategy. If I do a really good job and am effective at transforming how we do end-of-life care, there will be a decrease in costs. But that's not what's driving me, so when folks want to go there in our brainstorming and strategy sessions, I remind everyone of that.


'Explosive' Healthcare Spending at End of Life Uncommon


There's a danger of losing the mission, which is that we're trying to know and honor what our patients want. For some people that will be aggressive end-of-life care.

My belief is that most people, when they are provided the right information and asked the right questions, won't choose aggressive and expensive interventions if it will not change the outcome.

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Philip Betbeze is the senior leadership editor at HealthLeaders.

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