In tough times, cancer patients find independence and solace with help of Supportive Care Clinic
by Carrie Carroll
When Malcolm Butler was diagnosed with stage 4 colon cancer last year, it flipped his world upside down. Struggling to decide which way to turn for help, he was referred to Virginia Commonwealth University Massey Cancer Center’s Supportive Care Clinic to form a plan and begin treatment.
The first step for Butler was to help him get to a healthy mental state, as opposed to concentrating on just his physical condition. Tamara Orr, Ph.D., a clinical psychologist, worked with Butler at the clinic at VCU Health at Stony Point to manage his depression and anger.
“I was in a state of feeling rebellious and I didn’t want to listen to anybody,” said Butler. “I was angry with God, angry with the world. They worked with me mentally first, getting that area of recovery in place.”
The interdisciplinary palliative care team at the Supportive Care Clinic includes physicians, nurses, psychologists, physical therapists, occupational therapists, pharmacists, nutritionists, chaplains and researchers. The team collaborates to assess a patient’s physical, psychological, emotional and spiritual needs. Together, team members identify the best interventions based on the patients’ and families’ individual needs, working to emphasize efforts that will help improve quality of life as patients progress through difficult treatments such as surgery, chemotherapy, radiation and sometimes end-of-life care.
When Butler arrived at the clinic, a team worked with him to develop a plan that would help him manage his symptoms while receiving cancer treatment. Symptoms are measured with the Edmonton Symptom Assessment System intake form, which provides a subjective history of the patient’s chief concerns.
The ESAS is a patient-reported form that utilizes a 0-to-10 numerical scale to measure components that include pain, fatigue, nausea, depression, anxiety, shortness of breath, appetite, sleep and overall well-being. A score on any single symptom of 4 or higher indicates moderate to severe symptom burden in need of treatment. Each patient fills out this form at every visit so the team can assess which medications need to be adjusted or what needs to be done to manage symptoms.
“The advantage of this clinic is the interdisciplinary care,” said Egidio Del Fabbro, M.D., program director of palliative care at Massey Cancer Center. “There is an extra layer of support including physical, psychosocial and family needs. Not just the patient needs help during diagnosis and treatment.”
The team supplies 32 hours of outpatient care in eight supportive care clinics at VCU Health and Massey Cancer Center, and had more than 2,000 patient contacts in fiscal year 2015. In the past three years, the clinic has grown exponentially. It began by seeing patients for a half-day every week. As the patient need grew, so did the clinic and the team. The team now sees patients five days a week at the Stony Point location and in North Hospital’s Dalton Clinic on the MCV Campus.
Providing outpatient palliative care for cancer patients through the Supportive Care Clinic is one of the newest innovations at Massey Cancer Center. The clinic is part of Massey's international award-winning palliative care program, which, in addition to providing patient care, also serves as a center for research and training in the field.
It is unusual to have both an inpatient and outpatient palliative care clinic. Fewer than 50 percent of National Cancer Institute-designated Cancer Centers have an outpatient palliative care unit and very few programs have the capacity to see patients five days a week. The Supportive Care Clinic with its interdisciplinary palliative care team allows patients to be seen more frequently to help manage pain and symptoms and also prevent lengthy hospitalizations.
“The beauty of the Supportive Care Clinic is the team approach,” said Susan Stella, D.P.T., physical therapist. “When patients get to us they are often feeling lousy. They are nauseous, tired, anxious and in pain, with little to no appetite, and spend most of their day on the couch or in bed. By using medical interventions to control the cancer pain and anxiety and physical interventions to control the mechanical pain and fatigue, the patients have a win-win situation.
“They often find improvement no matter where they are in the treatment cycle. The physical therapy component is very empowering because patients get to do it for themselves. I have seen people in the last months of life dancing at a wedding, walking the Freedom Trail and accomplishing the goals they have set for themselves. It is amazing to see a person regain their independence and quality of life.”
Butler comes to the clinic every week. One week, he receives treatment and the next he meets with this team. He averages about five to six hours a visit. He has spent enough time at the clinic over the past year that his team has become like a second family.
“I trust them all,” he said. “They are doing the best they can do for me. They keep me aware of my condition, where I am in my treatment, our goals and what we are trying to accomplish. They treat me like a person instead of a number. It’s not just medicine here. Knowing that people care, it makes a difference.”