In the fall of 2013, Joan Hart was part of a seven-person team from the University of Colorado Cancer Center and University of Colorado Hospital who visited Mount Sinai Hospital in New York for an oncology-focused seminar. The focus wasn’t on finding a cure or a new treatment for the disease but rather on building psychosocial programs to support patients diagnosed with cancer as well as their families.
Hart, a social worker with the Cancer Center, said the three-day workshop, developed by City of Hope, reflected a change, still evolving, in the way health care providers and society at large view cancer. Not so long ago, the disease was viewed as a death sentence. For decades, resources poured into finding new ways to defeat it. Today, that battle goes on, but medical advances have helped to make cancer a chronic disease for many. That means many patients face the unexpected challenge of coping with changes imposed by surviving cancer.
“The focus has shifted from killing the tumor to also treating the patient as an individual who has survived cancer in the context of their family and community,” Hart said. Survivorship, she added, affects finances, social stability, future health concerns, quality of life, relationships and more.
The 2013 trip laid the foundation for building an integrated supportive care program at the Cancer Center. That effort took a major step forward in June with the appointment of Marianne Pearson as director of Supportive Care for Oncology and Laura Melton, PhD, as medical director. The program’s aim is to help patients live their lives after disease as productively as possible.
The work isn’t about reinventing the wheel but rather taking separate wheels that work well independently and getting them rolling together in the same direction. Cancer Center patients already get help from social workers, dietitians, psychologists and rehabilitation specialists in addition to their medical care. American Cancer Society patient navigator Ashley Doty also helps to connect patients with services around Colorado. The Supportive Care program aims to unite their individual skills in common purpose.
“We’ve had the pieces but not the connective tissue,” as Hart put it.
In Pearson, a social worker by training, they have an individual with prior success building an integrated support team at UCHealth Northern Colorado’s Cancer Center. There, Pearson served as program manager of psychosocial oncology, bringing together patient navigators, counseling services, cancer-focused rehabilitation, and much more to help shepherd survivors along roads often made rocky by the physical and emotional challenges of the disease.
“Our goal should be to develop a plan of care that follows each patient’s wishes,” Pearson said. “They may not initially know what they want because of the trauma of the disease. We can help them to get healthy and beyond their cancer as much as possible.”
There is much material on which to build. For example, the total number of Cancer Center social workers, dietitians and psychologists has nearly tripled since early 2013, said Jamie Bachman, executive director of Oncology Services for UCH, one of the team members (see box) who journeyed to New York for the workshop at Mount Sinai. Well before that, projects like the TACTIC (Thriving after Cancer is Complete) Clinic and the What Is Next program reflected a growing recognition that survivorship is more than a matter of having a successful surgery or completing a regimen of chemotherapy.
Today, the growing number of cancer survivors has increased the urgency for well-developed supportive care services. In 2015, the American College of Surgeons’ Commission on Cancer made “distress screening” to identify psychological, social or spiritual factors that could impede a patient’s recovery a requirement for cancer center accreditation.
“It’s no longer the type of thing you piece together through the generosity of a foundation or something that you dip a toe in the water,” Bachman said. “If you want to be a prominent cancer center and do the right thing by patients, you have to do it.”
A well-organized, multidisciplinary supportive care program could yield numerous benefits, Bachman said. For example, it would enable the team to respond more quickly to patients who post high scores on the distress screening.
“Right now we’ve been more involved in crisis management of these patients,” he said. “With greater resources and better organization, we can be more effective in addressing issues earlier.”
That, in turn, could help patients stay on track with their treatments and medications and reduce unnecessary emergency department visits and hospital admissions. Melton noted, for example, a psychologist might offer help for a patient with claustrophobia who faces radiation treatment or a chemotherapy patient with a needle phobia. In that regard, a supportive care program would work hand in hand with the Cancer Center’s CARE Clinic, which opened in the spring of 2015, to address proactively acute clinical symptoms that can derail a patient’s treatment, Bachman noted.
The program also promises to be a boon for providers, many of whom would like to assist their patients with questions about diet and appetite, sexual health, depression, physical challenges of surgery, fatigue, sleeplessness, pain, and more, but lack the training and time to do it, Bachman said.
“Supportive care is best for patients, but it is also quite important for providers,” he said. “Having other experts to handle those questions frees up physicians and advanced practice nurses to see new patients and focus on the clinical piece of their care.”
The task ahead
The initiative is in very early days, but Melton envisions it as an opportunity for the Cancer Center to lead changes in patient care. Those who are part of the new team will not only learn and develop new ways to help patients manage their condition, but also serve to educate others, she said.
“Our dietitians, social workers and psychologists will build their professional portfolios and train the next generation of providers, who will learn how to deliver interdisciplinary care at a National Cancer Institute-designated cancer center,” Melton said.
Much of Pearson’s job will center on building the operational structure to meet these goals. She said she will take a “lean” approach – analyzing the workflows for patients who need supportive care services now; identifying barriers to care, duplication and inefficiencies; and charting a path that integrates and standardizes the way patients get needed services. Brian Shields, a process improvement consultant with Oncology Services, will work with her on the project.
“We have a team already,” Pearson said. “The job is to connect all the supportive care providers, assemble teams, and build a process that delivers high-quality care with the least waste.” Feedback from patients and their families will be essential, she added.
Just as new cancer medications and therapies target specific biomarkers in an individual’s genetic makeup, plans of care for cancer survivors will need to address the factors that could affect their recovery and influence the quality of the days that lie ahead, Melton concluded.
“We are acknowledging that cancer affects not only the cells of a cancer patient, but also their whole life,” she said.
The original team
The seven-person team that visited Mount Sinai Hospital in New York in 2013 to learn about building a supportive care program in oncology:
- Jamie Bachman, UCH executive director of Oncology Services
- Ben Brewer, psychologist, BMT Unit
- Joan Hart, social worker, Oncology Services
- Elizabeth Kessler, MD, then an Oncology fellow, now an attending in Urologic Oncology
- Jean Kutner, MD, palliative care champion and now UCH chief medical officer
- Kristin Leonardi-Warren, then cancer program coordinator, now a nurse in the UCH Breast Clinic
- Lisa Wingrove, clinical dietitian, Oncology Services