Fred Hutch Legacy Insiders

Cancer patient advocate and founder of the accessible language nonprofit www.hear2care.org Ting Ting Zhang asks a question during Fred Hutch’s Value in Cancer Care Summit, held November 6.

Photo by Robert Hood / Fred Hutch News Service

Challenges big and small

Keynote speaker Barbara Segarra-Vazquez, DHSc, professor of the School of Health Professions at the University of Puerto Rico, has been a cancer patient advocate since her early-stage breast cancer diagnosis in 2003.

“I try to advocate for those who cannot advocate for themselves,” she said, going on to discuss some of the common patient challenges — from food, housing and transportation insecurity to a lack of care coordination and financial help — that could be alleviated by the use of patient navigators.

“Patients are taking half their medications and sacrificing basic needs to get treatment,” she said. “The challenges come at many levels.”

Seeking financial navigation help early on in the treatment process as well as actively participating in all treatment decisions are crucial for patients and caregivers, Segarra-Vazquez said. But before making any decisions, patients need to first understand their cancer and what their insurance — if they have it — will cover.

“When you’re diagnosed, it’s all about the stage, the prognosis, the treatment options and what are you going to choose and by the way, you have to choose by tomorrow,” she said.

But patients can’t truly participate in shared decision-making if they don’t understand what type of cancer they have — or what kind of treatment their insurance will cover.

“One of the first things a patient should know is what their insurance will cover and what they have to pay out of pocket,” she said.

She also pushed clinicians, administrators and researchers to think outside the box when it comes to finding sources of support for patients.

“Let’s be creative,” she said. “Sometimes you might not be able to give a patient money, but you can make her life easier by coordinating all the treatment appointments so they’re close together.”

Other ideas for health care providers and centers:

• Partner with businesses and vendors (like gas stations) to provide vouchers for patients.
• Partner with local schools and universities to raise funds (or food vouchers) for patients.
• Research area support groups and nonprofits to see what help they offer — or provide them with the list of needs you have identified in your patient population.
• Provide venues and spaces for cancer support groups.
• Include family and caregivers in the conversations around solutions.

“It’s important to never assume what people want,” she said. “Let’s find out what they want.”

Fred Hutch head-and-neck cancer oncologist and researcher Dr. Keith Eaton discusses innovations in patient care and coordination with (left to right) oncologist and medical director of hematology-oncology at Northwest Medical Specialties Dr. Sibel Blau, patient advocate and keynote speaker Dr. Barbara Segarra-Vazquez and Gwen Darien of the Patient Advocate Foundation during the Value in Cancer Care Summit.

Photo by Robert Hood / Fred Hutch News Service

Battling burnout

Clinical health psychologist Fay Hlubocky, PhD, from the University of Chicago, talked about patient and provider burnout, which she called “a combination of exhaustion, detachment and cynicism that develops with unrelieved stress over a long period of time.”

Research, she said, shows burnout is growing among oncologists and it’s getting worse as organizations become more corporatized and new practices are introduced such as telehealth with its resulting “Zoom fatigue.”

“Pre-pandemic, about 45% of the U.S. membership of ASCO [American Society of Clinical Oncology] reported emotional exhaustion and/or depersonalization,” she said. “In 2023, the burnout was significantly higher, 59%. Although, 63% still reported finding joy in their work — they love working with patients.”

Providers, she said, point to work overload, exhaustion, depersonalization, feeling ineffective and an abundance of occupational stress as driving their burnout. For patients and caregivers, burnout is more about living with the diagnosis, grief and loss, dealing with treatment and side effects and all the daily stressors.

“But the core feature of burnout for both patients and clinicians is emotional and physical exhaustion,” she said.

How can cancer patients manage and cope with burnout?

Hlubocky pointed to advocacy, which gives many patients a feeling of empowerment and inspiration; psychosocial help; pacing yourself so you have energy for what matters and asking your cancer care team for help and resources.

“It’s OK to not feel OK,” she said. “It’s also good to forgive yourself when things don’t go as planned.”

What can clinicians and other care providers do to battle burnout?

“We can all cultivate resilience,” she said. “It’s a positive response to adversity. We can adapt to these changes and focus on strengths like vitality, engagement and self-advocacy. We can promote a sense of control and commitment within ourselves. And we can set boundaries.”

Mindfulness — taking a moment to be fully present and in touch with your mind and body — is also helpful.

“You need to know when to go home and when to say no,” she said, suggesting doctors and other health care providers take a mindful moment whenever they’re washing their hands during the day.

“Recognition of burnout is imperative for well-being,” she said.

Fred Hutch’s Dr. Scott Ramsey dedicated the summit to patient advocate and Cierra Sisters founder Bridgette Hempstead, who died of metastatic breast cancer last December. “Bridgette was an inexhaustible reservoir of energy. She was passionate about raising awareness about the problems that Black patients with cancer are facing. She inspired me, she challenged me, but she always uplifted me. As she did with everyone she met.”

Photo by Robert Hood / Fred Hutch News Service

‘Out-relating’ misinformation and mistrust

Featured speakers and audience members discussed a host of topics throughout the rest of the day, including the possibility of delivering palliative care to cancer patients via telehealth, especially earlier on in the treatment process when it’s often not provided.

Jennifer Temel, MD, of Massachusetts General Hospital talked about the challenges of communicating the aims of palliative care — which is supportive care to manage symptoms — a service that’s still regularly misunderstood.

“People shut down when they hear that word — they think you’re giving up on them,” said one nurse in the audience.

University of Washington’s Anthony “Tony” Back, MD, spoke on the shifting landscape of trust in medicine and science (spoiler alert: it’s gone steadily downhill) and the challenges of dealing with a tsunami of misinformation, attacks on science and a scourge of social media influencers peddling bad advice.

“We can’t out-compete misinformation,” he told attendees. “We have to out-relate it. You as a person can make the difference,” reminding attendees that rumors about the medical industrial complex hiding cancer cures in order to milk patients for money is ages old, “and it’s getting worse because now new influencers are promoting it.”

He said a good way to counteract this is by promoting a healthy information diet and a healthy information ecosystem to patients with cancer.

“Your information is now being exploited and monetized by a bunch of billionaires who want to use your attention to make more money,” he said. “Making that dynamic clear helps people realize the risk. Influencers personally profit on misinformation.”

The day’s events also included a moment of recognition and acknowledgement for Bridgette Hempstead, founder of the cancer support group Cierra Sisters and longtime HICOR collaborator.

“Bridgette was an inexhaustible reservoir of energy,” Ramsey said of his late friend and research partner. “She was passionate about raising awareness about the problems Black patients with cancer are facing. She inspired me, she challenged me, but she always uplifted me. As she did with everyone she met. This year’s summit is dedicated to her memory, her legacy and her can-do spirit.”

Slides from the presentations at the Value in Cancer Care Summit will be available on the HICOR website.