Patients take starring role to define, shape palliative care

Improving value, decreasing human and financial costs of cancer are the focus of Palliative Care Quality Measurement Summit
Dr. Scott Ramesy speaks at palliative care summit
"In many ways, our summit is about starting a community process to improve palliative care," said Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research, shown here speaking at the palliative care summit last Friday. Photo by Bo Jungmayer / Fred Hutch News Service

Cancer patients were the star participants at a palliative care summit held Friday in Seattle. The Palliative Care Quality Measurement Summit was the latest in a series of community meetings designed to increase value and decrease the human and financial cost of cancer care.

“That was the best patient turnout we’ve had,” said Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research, or HICOR. “I’ve never had the experience where the advocates were kind of leading the conversation. I’m very happy with how many people came out and how active they were in the conversation. That was amazing.”

Co-sponsored by HICOR and the University of Washington’s Cambia Palliative Care Center of Excellence, or CPCCE, the summit drew more than 100 stakeholders — oncologists, researchers, social workers, data analysts, statisticians, hospital administrators, policymakers and patient advocates — from Washington state and beyond.

“In many ways, our summit is about starting a community process to improve palliative care,” Ramsey said. Palliative care is specialized medical care for people with serious illnesses, with a focus on providing symptom relief and improving quality of life for the patient and family.

At the heart of HICOR and the CPCCE is a desire to both improve overall care for patients and reduce the crippling costs of cancer — costs that often bankrupt patients and their families and are predicted to skyrocket to $175 billion by the year 2020. Data, metrics, measures and, eventually, interventions are the foundation of that work. Friday’s summit focused on how palliative care is currently being delivered and what it might look like in the future. 

Figuring out the ‘whys’

Ramsey presented a handful of oncology metrics — prioritized by stakeholders and crunched by HICOR’s statisticians and health economists — that painted a rudimentary picture of a cancer patient’s last 90 days of life. The data were gleaned from the records of 66,000 cancer patients from western Washington who’d been diagnosed and treated between 2007 and the spring of 2014.

The statistical story of those who died of solid tumors was created by linking clinical data from the Fred Hutch-based Cancer Surveillance System with insurance records from Regence and Premera, the region’s two largest insurance carriers, and included the following findings:

  • More than twice as many patients died in a hospital setting than in their own homes.
  • Four out of five patients were admitted to the hospital or emergency room at least once in their last 90 days of lie.
  • Nearly half of patients underwent chemotherapy or radiation in their last 90 days of life.
  • Nearly 80 percent of patients had undergone advanced imaging (CT, PET or MRI scans) in their last 90 days of life.
  • Just 2 percent of patients were referred to hospice 90 days before they died. At death, only half had been enrolled in hospice.
  • Only half of patients received narcotics at the end of life.

Ramsey — and audience members —pointed out that the metrics were based on incomplete data. HICOR doesn’t yet have access to Medicare data. Insurance records might not be 100 percent accurate and electronic health records have yet to be folded in. Crucial patient information that might shed light on treatment decisions is also missing.

“There are so many holes,” said Ramsey. “This just tells you the ‘what,’ it doesn’t tell you the ‘why’ at all.”

Ramsey said many questions need to be answered before the findings could be transformed into interventions — and eventually changes in policy — and he stressed the need for patient participation.

Lung cancer patient Janet Freeman-Daily
Summit attendee Janet Freeman-Daily, a lung cancer patient, pointed out that many patients don't know that palliative care is available unless they are dying. Photo by Robert Hood / Fred Hutch News Service

Patients ‘key to making this work’

“This is an ongoing conversation and we need the patient voice at every point — from measuring, from designing studies, from interpreting those studies,” he said. “You’re the key to making this work,” he said to the patient advocates in the room.

That voice came through during a breakout session that generated what Ramsey later called “a very spirited, very passionate and very complex” discussion of cancer care, from diagnosis through death.

After HICOR researchers presented studies on the benefits of early palliative care, lung cancer patient Janet Freeman-Daily pointed out many patients don’t even know that type of care is available unless they’re dying.

“Very few cancer patients even hear that palliative care exists for patients in active treatment,” she said, emphasizing the need to initiate a supportive care relationship from the moment a patient is diagnosed.

While many in the room felt more education for both patients and providers would help with this, Seattle breast cancer survivor Courtney Fede Preusse pointed out that for the patients she knows, it’s access — not education — that’s missing.

“It’s not about educating patients in what services are out there,” she said. “It’s about helping them get the acupuncture and helping them get the counseling and helping them get their insurers to pay for these services.”

Triple-negative breast cancer survivor Alaura Keith and colorectal cancer survivor and cancer “doula” Michelle Meeker floated the idea of paid patient mentors.

“When I was in treatment, I kept wondering, ‘Where’s the person to talk to who actually knows what I’m going through?’” said Keith. “This needs to be part of the care team. There should be someone who is employed [to do this].”

The patient stories spoke of a broken system where diagnoses are dropped like bombshells and patients are left to navigate a jungle of jargon and the harsh realities of treatment, lost body parts, impending death — without consistent and insurance-covered emotional and supportive care.  A system where anxious survivors are swept out of the clinic door as soon as they finish treatment, where a weekend or after-hours emergency can easily lead to costly ER visits and a raft of unnecessary tests.      

Good medicine, good business

The more participants talked of their cancer journeys, the more the line between payer and provider and patient became blurred. Some participants first spoke as an oncologist or insurance rep, then switched hats and talked of their own diagnosis or that of a loved one. The need for improved policies and processes seemed to touch everyone in the room and was backed by data showing how a handful of thoughtful health interventions can both improve biological outcomes and save money.

Or as Fred Hutch public health researcher Dr. Bonnie McGregor put it: “Addressing the emotional healing is not just good medicine, it’s good business.”

By the summit’s end, a sense of what palliative care should look like began to emerge: Shared decision-making, clear and sensitive communication about prognosis, improved emotional and symptom management support (particularly after hours), patient mentorship, engagement with caregivers and ongoing discussions about treatment goals and priorities with payer participation to ensure these needs were met.

Participants weren’t sure who would do all this heavy lifting — whether it would be nurses, social workers, patient navigators or other patient advocates.  And many weren’t even sure what to call it.  Is it palliative care — which carries a problematic connotation — or is it actually supportive care?

Whatever the name, most agreed there was a need for it, and patients seemed thrilled it was being discussed.

“It’s really important that we talk about the consumer of the product, and that would be the patient,” said Camins Bretts, a multiple endocrine cancer patient from Seattle. “If I wasn’t sick, y’all wouldn’t be here.” 

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog Reach her at

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