Putting the Ball In Your Court With Cancer Coaches

Overwhelmed, frustrated, scared: Boston resident Mary Jane Gendreau was slammed by emotions when she received a diagnosis of grade 4 glioblastoma in February, just a few days shy of her 60th birthday. Within two weeks, she had surgery to remove the tumor.

As she recovered and prepared for weeks of alternating radiation therapy and chemotherapy, Gendreau searched for online support groups and information about novel treatments. “My medical care team was great, but I didn’t feel like they had the time to sit with me, answer questions, explain alternative or complementary therapies or help me discern what my future might look like,” Gendreau says. “The hospital had a wall plastered with brochures, but I needed more one-on-one engagement and direction. Early on, it became clear that it was primarily my responsibility to research new studies, alternative therapies and potential clinical trials — all while I was still recovering from brain surgery.”

In her search for answers and resources, Gendreau stumbled onto the webpage for cancer coach Jeannine Walston. “I didn’t know that cancer coaches existed,” Gendreau says. “But when I read Walston’s story and saw her credentials, I knew she was the person who could help me navigate this confusing new world I was now living in.”

In 1998, at age 24, Walston learned she had a rare type of cancerous brain tumor, oligoastrocytoma. Over the past two decades, she has undergone three brain surgeries, radiation, chemotherapy, clinical trials and integrative cancer therapies, even venturing overseas for treatments. Walston’s diagnosis changed the trajectory of her life. She embarked on a cancer-focused career path, working as a patient advocate, educator and researcher for nonprofit organizations, the National Cancer Institute, the Food and Drug Administration and the National Institutes of Health’s National Center for Complementary and Alternative Medicine (now the National Center for Complementary and Integrative Health). She is also a CURE® contributor.

Walston, who lives in Los Angeles, started offering her services as a cancer coach in 2007. “At that point, I had provided information to support groups, attended brain tumor and cancer conferences, and worked in the cancer field for 10 years,” she says. “Many people kept coming to me for advice and information. I wanted to help, and I knew my personal and professional experiences coaching cancer patients and caregivers addressed essential needs.”

EMPOWERING PATIENTS TO MEET CHALLENGES

The popularity of professional coaching has grown significantly since the 1990s. There are coaches to help discern purpose in life, improve health and wellness, navigate divorce and break into a new career. Whatever the problem, there’s a coach who can offer help. In many ways, cancer coaches are a natural extension of health and wellness coaching, helping clients — mainly patients but also caregivers and other loved ones — improve quality of life throughout the cancer journey.

“Cancer coaches provide a valuable service by helping patients create goal-oriented plans that help them manage particular challenges,” says Dawn Wiatrek, interim senior vice president of patient and caregiver support for the American Cancer Society (ACS). “As soon as you receive a cancer diagnosis, so many factors are out of your control. Coaches provide needed support and guidance that help patients break down barriers and instill a feeling of confidence. They empower the patient to feel more in charge of an uncertain health situation.” Wiatrek notes that the ACS has been coaching people for years through its tobacco cessation program. “Cancer coaching is a similar idea,” she says. “You are giving someone the tools to help them navigate what seems like an insurmountable task.”

Talaya Dendy, founder of On the Other Side cancer coaching in St. Paul, Minnesota, says her services save clients from putting time, effort and energy into treatment planning that would be better focused on physical and emotional healing. “I research treatments, cancer centers, specialists and available resources and condense that information into easy-to-understand terms that spare the client the gloomy statistics,” Dendy says. In addition to helping clients manage the emotional side of cancer, she helps them maximize time with care teams. “Patients are often shocked at how little time they actually have with their oncologist or medical team,” Dendy says. “I make sure my clients are prepared for these appointments so they can advocate for themselves, get the answers they need and make informed decisions.”

The ACS sees so many patient benefits to cancer coaching that the organization is using a grant to provide coach training to ACS patient navigators employed at approximately 70 cancer or medical centers nationwide, Wiatrek says. “Historically, the role of a navigator has been to provide patients, caregivers and loved ones with resources for things like paying medical expenses, getting to and from treatments and connecting patients to community organizations that can offer assistance,” she says. “Increasingly, our navigators have found more patients relying on them to counsel them through what questions to ask their care team or asking for more personal guidance.”

As employees of hospitals or cancer centers, patient navigators and oncology social workers can help schedule appointments and medical tests, as well as work with billing departments and health insurers, something cancer coaches don’t do. Navigators and social workers may steer a patient toward general information about treatments and social support networks, whereas coaches can spend more time researching and gathering information specific to a patient’s needs.

Preliminary results from the six ACS sites that piloted the patient navigator coach training are positive. “Patients said that they felt more confident after being coached on how to improve communication with their care team,” Wiatrek says. Patients also understood their treatment plans better, and doctors noted improved compliance. By offering not only in-person sessions but also services via phone, Skype and email, cancer coaches may bridge a gap in care for patients who lack easy access to hospital or cancer center resources.

Because cancer coaching is a relatively new field, few studies address its specific benefits and effectiveness. Findings from a 2017 study from the University of Alabama at Birmingham showed that pairing older cancer patients with nonmedical professionals who received coach-type training reduced patients’ need for other health care resources, which in turn lowered costs. Other studies on health coaching suggest that these services bolster patient engagement, leading to improved quality of life, reduced hospital readmission rates and lowered medical expenses. Health coaching appears to be especially helpful for people dealing with chronic illnesses like cancer.

A COMPLEMENTARY APPROACH TO CARE

Cancer coaches aren’t meant to replace patient navigators, oncology social workers or case managers, and they are quick to emphasize that they are not medical experts. “I share what I know from my unique patient perspective and decades of experience working in cancer and health care arenas. I do not give medical advice,” Walston says.

Gendreau first turned to Walston for help gathering information about possible treatments so that she could consider them, speak to her care team and make informed decisions. “My job for a software company required doing a good bit of research, so I felt confident in my researching skills,” Gendreau says. “Still, I was overwhelmed when I started exploring my condition and treatment options. I felt like I was being buried in a landslide of information.”

Walston helped Gendreau create an action plan, breaking down her to-do list into achievable steps. This approach eased some of Gendreau’s anxiety and uncertainty. Walston also researched and shared information about integrative therapies, such as yoga, acupuncture and art, something Gendreau’s care team didn’t seem to have the time or expertise to address.

Most recently, Gendreau asked Walston for help deciphering the vast number of clinical trial opportunities. “I could ask my husband or daughter to do some of this research, but that exposes them to all of the scary statistics and information. They are as shocked and frightened as I am,” says Gendreau, who emphasizes that Walston serves strictly as her coach and not her therapist. “I have a terrific therapist who is helping me cope with my emotions,” she says. “The coaching aspect gives me a sounding board, a place to discuss ideas and next steps. Having Jeannine to turn to has greatly lifted a burden off of me and my loved ones.”

Some medical centers and nonprofit organizations pair patients and mentors who have a similar diagnosis. Cancer coaches go beyond this type of peer-to-peer service. “A mentor or peer provides emotional support. They can tell you about their experiences, but their role isn’t to give advice or offer suggestions on what you should do,” says licensed social worker Angelique Caba, senior director of social work administration for CancerCare, a national nonprofit organization that provides free, professional support services for anyone affected by cancer. “A coach provides practical guidance and helps you anticipate barriers to care and troubleshoot for problems.”

Donita Wheeler, founder of Donita Mama Bear, a cancer coaching company, believes her services complement those of other specialists. “I feel each of us has something unique to offer to the cancer community. We must lean on each other to get through the most difficult times,” she says.

That is exactly what Gendreau is doing with her coach. “I now know that it was naive of me to expect to get much hand-holding from my oncologist,” she says. “I appreciate that there are cancer coaches who have taken the worst evil you can imagine and turned it into a passion to help others.”