‘The story isn’t over:’ Why cancer survivorship care is more than checking a box – Becker’s Hospital Review | Healthcare News

As director of cancer rehabilitation and survivorship at Los Angeles-based Cedars-Sinai, Arash Asher, MD, has seen first-hand the disorienting effects felt by cancer patients upon reaching the “survivor” stage of cancer treatment. 

“Some people want to sweep their cancer experience under the rug and get on with life,” he said in a June 12, 2023, news release from the health system. “For others, it’s too big to sweep under the rug. Many people say that they feel lost after treatment ends. The warrior phase is over, the boxing gloves have come off and they’re unsure of what to do next.”

To help patients cope with this uncertainty, Cedars-Sinai offers supportive services through its multidisciplinary Wellness, Resilience and Survivorship program. 

Dr. Asher spoke to Becker’s about the program’s offerings, and shared why establishing a survivorship care model is not just another “box to check.”

Editor’s note: Responses have been lightly edited for clarity and length. 

Question: How are hospitals like Cedars-Sinai evolving their care models to support long-term survivorship beyond the acute phase of cancer treatment?

Dr. Arash Asher: Major hospitals like Cedars-Sinai are demonstrating their commitment by dedicating significant resources to survivorship. The very fact that we have a formal survivorship program is a testament to the fact that we take this phase of the cancer journey seriously.

While there are national requirements for survivorship care, they can sometimes become a rudimentary, “check-the-box” exercise. The real question is, what are we doing that authentically changes survivorship care in a way that truly makes a difference? At Cedars, we’ve created a multidisciplinary team —  our Patient and Family Support program —  that includes cancer rehab doctors, palliative care specialists, psychiatrists, dietitians and exercise physiologists. Getting through cancer treatment entails one set of needs, but addressing the long-term issues of survivorship —  fatigue, fear of recurrence, “chemo brain,” body composition changes and psychological distress — requires a different set of expertise.

The fundamental problem, however, is scalability. Our programs, like our one-on-one tailored exercise program, are incredibly effective and sought-after. We see profound benefits, not just in quality of life, but also likely in reducing recurrence and unnecessary healthcare visits. But we have a one-year waitlist, without any advertising. We are touching maybe less than 1% of the eligible patients who could benefit. So, while sincere efforts are being made to offer programs that make a difference, the greatest challenge for major institutions is making them scalable and accessible to the thousands of patients who need them.

Q: What operational or cultural barriers within health systems need to be addressed to improve patient adherence to evidence-based survivorship practices like physical activity, nutrition and stress management?

AA: The central barrier isn’t a lack of information. Most of our patients know why they should exercise, eat well and practice mindfulness. The challenge is the how. As Nietzsche said, “He who has a why to live can bear almost any how,” and while we’ve given patients the “why,”  health systems are still struggling to provide them with the “how.”

A key cultural and operational barrier is the failure to address the loss of agency a patient experiences. Throughout their diagnosis and treatment, our patients are overwhelmed with a myriad of appointments and healthcare decisions with multiple specialists, and that sense of control over their own life is often shattered. It is precisely that sense of agency that one needs to successfully stick with an exercise program or make lasting nutritional changes. When we see a patient go from doing three push-ups to 20, yes, they are physically stronger, but more importantly, their sense of self-efficacy is restored. They begin to trust their bodies and therefore themselves again.

Another cultural barrier is the system’s abrupt end to structured support. For many survivors, the real distress begins the day their active treatment is over. They go from a full schedule in warrior mode to being told, “Congrats, you’re all done. Come back in three months.” They are left floundering without a roadmap. Health systems need to recognize that the story isn’t over. This period right after treatment is a critical “teachable moment” where we have an incredible opportunity to help patients integrate new habits that can empower them for the rest of their lives.

Q: What resources, programs or partnerships can hospitals/health systems employ to help improve the quality of life and health of cancer survivors?

AA: There is a spectrum of needs. A small number of patients are so self-motivated they don’t need much help and another small group may not be ready to change their habits, no matter what you do. But the vast majority of survivors need a program that is tailored to where they are.

The solution isn’t just prerecorded videos or handouts. They might help some, but they lack the key ingredient for sustained change: accountability. This is where the marriage of technology and human connection becomes transformative. We need to fill the gap between high-touch, in-person programs that aren’t scalable and the sea of online content that is often not evidence-based or created by experts.

The ideal model, and where I see the future of survivorship care, involves partnerships that can deliver expert-created content through a platform that also provides a viable, meaningful, one-on-one interaction that is sustained over time. This allows a coach to get to know the patient as a human being, fostering the trust and accountability required for true behavior change. Such partnerships are essential to make best-in-class care accessible to people in rural areas, inner cities and hospital systems that don’t have the resources to build these programs from scratch.

Many institutions, including ours, have long envisioned a model that combines expert-developed content with consistent, personalized coaching. But building that kind of infrastructure — from curriculum to staffing to digital delivery — requires a level of investment and operational focus that most health systems simply can’t prioritize.

One resource, [a digital coaching platform for cancer patients] called Complement 1, has built the scalable, clinically grounded platform we need to make structured lifestyle support accessible — without sacrificing the human touch. This kind of model, in my opinion, represents an incredible opportunity for real, sustained behavior change and optimal survivorship.

Ultimately, my hope is that payers and insurance companies will begin to reimburse for these programs. The evidence is mounting that they are not just feel-good ancillary services but an absolute requirement for optimal care. 

If there is one intervention that helps a multitude of symptoms more than anything else, it’s tailored, therapeutic exercise. If you could bottle it in a pill, it would be a trillion-dollar pill.