EDITOR’S NOTE: Knox Pages sent reporter Grant Pepper to Austin, Texas for the 2019 South by Southwest convention. From March 8 to 12, he’ll attend conferences where industry leaders will discuss the future of healthcare, technology, downtown development and more. Each day, he’ll report back on his findings. The goal? To spark conversation about what’s next, and how this region can be a part of it.
AUSTIN, TEXAS – When Christina Bain was diagnosed with colorectal cancer in 2015, she quickly became overwhelmed.
In between surgeries and chemotherapy sessions, Bain spent her time managing a complicated appointment schedule. She had to travel across Austin to receive help from oncologists and social workers. She struggled emotionally and financially as her world turned upside down. She felt helpless.
But four years later, here she was, sitting in front of a crowd at the 2019 South by Southwest convention with a wide smile on her face. At this point, Bain’s cancer is chronic. She’ll be in treatment for the rest of her life. But what made her smile was the same reason she sat at the podium on Sunday. She was making a difference in the future of cancer care.
Bain is part of a team that is changing the way people think about the cancer treatment process. She was accompanied on Sunday by three members of her team, all of whom play different roles at the University of Texas’ Dell Medical School.
In December 2018, Livestrong Cancer Institutes opened at UT-Austin, as a function of Dell Medical School. It includes a state-of-the-art facility and revamped staffing. But what’s most unique about the new institute isn’t the building itself – it’s the way its patients are being treated.
The team at Livestrong has implemented a patient-first approach that differs from the way cancer treatment typically occurs. Typically, there is less focus on the overall well-being of the patient, Dr. Elizabeth Teisberg said, and more focus on treating the illness.
“Cancer care now often has miraculous results, but at the same time, all too often introduces chaos and mayhem into people’s lives as they navigate this journey,” said Teisberg, who is a professor and member of Dell’s leadership team.
At Livestrong, patients have access to an interconnected web of employees that focus first on the well-being of the patient. The oncologists, social workers, dietitians, psychiatrists, care navigators, genetic counselors and palliative care providers all work in the same building, which makes treatment less exhausting for patients. This allows them to spend more time focusing on their own lives and less on the cancer itself.
“It’s a flipped model,” said Dr. Gail Eckhardt, the inaugural director of Livestrong Cancer Institutes at UT-Austin.
In addition, each patient’s care is personalized. The same team of specialists works together to create seamless, efficient treatment plans for each patient.
But what truly separates Livestrong is its mindset. The staff has adopted the “CaLM” concept, which roughly stands for “cancer life reimagined.” This concept focuses on empowering patients and their families to live their lives fully during the treatment process.
When patients enter Livestrong, they are met by a team that gets to know the patient long before treatment begins. This sets the tone for an open relationship between patients and staffers.
“We need to know what’s important to a person, especially a person that’s balancing this serious illness that might limit the time they have to put their impact on the world,” said Dr. Elizabeth Kvale, a researcher who oversees supportive care and survivorship at the Livestrong Cancer Institutes.
Bain, who now receives treatment from Livestrong, said she’s been able to talk openly with physicians about her pain, which she was not able to do previously. She has talked to Livestrong staffers about deeply personal side effects of her cancer, such as the way it’s affected intimacy between her and her husband.
These discussions allow for better care, Teisberg said. They also improve a patient’s emotional and spiritual well-being, which can enhance the treatment process.
“If you get good supportive care and good palliative care in the case of a cancer diagnosis, you will more likely (live longer),” Kvale said.
While remarkable progress has been made in the physical treatment of cancer – what was once almost always considered a terminal disease can now turn chronic with treatment – leaders at Dell believe the patient-care aspect of cancer treatment has lagged behind.
“What I’d like to see is that we catch up,” Kvale said. “It is a radical paradigm shift to put the person in the center of (treatment).”
In summary, Teisburg said there are three core elements to Livestrong’s care. The first is “capability” – patients should have the ability to do what they want to do while receiving treatment (and doing so will aid their spiritual well-being).
The second is “comfort” – patients should be able to go through treatment without suffering physically. And the third element is “calm” – a patient should be able to focus on living their own life after being diagnosed with cancer, instead of living their life around the cancer itself.
“It’s amazing how different the perspective is when you think about a person with cancer, as opposed to a disease that brings a person along,” Teisberg said.
Eckhardt said UT’s new center is measuring patient treatment outcomes to see how this new approach impacts patients. She believes Livestrong could set the tone for the future of cancer treatment, as more institutions begin to recognize the importance of putting the patient’s personal well-being first.
“We’re prepared to be an incubator for a model that we hope, in 5-10 years, could become the standard,” Eckhardt said.
Part of Livestrong’s impact can also be attributed to the facility itself. The first-of-its-kind care center acts as a home for its patients. Patients have their own kitchen and high-tech work spaces. A rooftop garden is one of many amenities available to those experiencing treatment.
While Eckhardt acknowledged that many hospitals and cancer centers do not have the resources to recreate such an environment, she said that the patient-first care model can be applied anywhere.
She gave the example of a doctor and surgeon who worked specifically with breast cancer patients in rural Virginia. The doctor hired one of his former patients, a social worker, to be his patients’ personal care specialist. She focused on the emotional well-being of his patients, talking them through how cancer affected their lives and helping them find ways to carry on.
Eckhardt said that doing so allowed the doctor’s practice to separate itself from the pack.
After discussing the benefits of Livestrong’s model, Bain was asked about how patient-centered treatment has impacted her outlook on life.
“As a patient, I have control,” said Bain, who is now a part-time web developer for Ravelry, a knitting and crochet website. “This is a place where I am safe and I am home.”
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