Despite the increasing interest in outpatient palliative care, it is still not available to most cancer patients. One survey, although a few years ago, found that 59 percent of National Cancer Institute Cancer Centers—including NCI-designated comprehensive cancer centers, NCI clinical cancer centers, and NCI community cancer centers—offered an outpatient palliative care clinic, but only 22 percent of non-NCI cancer centers did (JAMA 2010;303:1054-1061).
Cancer center executives who responded to the survey identified three primary barriers to providing palliative care in either the inpatient or outpatient setting: limited budget; poor reimbursement; and limited staff who are trained to provide palliative care.
Brian W. Bell, MD, Palliative Care Medical Director at Spartanburg Regional Healthcare System in South Carolina (who was not involved with the JAMA study), points out that the Commission on Cancer (CoC), the American Society of Clinical Oncology, and the National Comprehensive Cancer Network all recommend that palliative care be provided as a routine part of cancer care. The CoC's 2012 standards say that the “availability of palliative care services is an essential component of cancer care, beginning at the time of diagnosis, and being ‘continuously available’ throughout treatment, surveillance, and, when applicable, during bereavement.”
That reflects the growing body of evidence that early palliative care is good quality care, he said in an interview. In addition to the Temel study, researchers at the University of Texas MD Anderson Cancer Center found that patients referred for an outpatient palliative care consult saw significant improvement in pain levels, fatigue, appetite, sleep, well-being, and five other domains (J Pain Symptom Management 2011;41:49-56).
“Now is the time you need to start looking into developing some type of palliative care program,” said Bell, who introduced outpatient palliative care at Gibbs Cancer Center & Research Institute in Spartanburg, S.C. last year.
The Supportive Care Clinic at Gibbs got its start in late 2011 when the center's leaders set a goal of providing outpatient palliative care services in their Palmetto Hematology Oncology clinic.
Nearly a year later—September 2012—the clinic started seeing patients one-half day a week. The clinic is staffed by Bell, a palliative care specialist; two oncology nurse practitioners who leave their normal clinic duties to work at the palliative care clinic on alternating weeks; a registered nurse trained in palliative care; and an oncology social worker.
“It doesn't take a big budget to do this,” Bell said. “We didn't add any new personnel; we just pieced it together using the resources that we had, and it has worked very well. But you need to have the cancer center supporting it because it does take a lot of staff time.”
Before the clinic opened, the nurse practitioners spent 32 hours—four hours a week for eight weeks—to train with the hospital-based palliative care team. “We did lectures, we did communication workshops; the nurses worked at the Hospice House and did a lot of reading to prepare,” he said.
The clinic is managed by an RN. Although the clinic is open only a half-day each week, she spends about 20 hours a week responding to phone calls and facilitating prescriptions.
How It Works
The Supportive Care Clinic was designed to reinforce the message that palliative care is standard practice. “We use Gibbs' EMR, their front office staff, and their marketing people so all our signage and pamphlets look just like Gibbs',” Bell said. “We didn't want the patients thinking, ‘Well, why am I coming here?’ This is just a part of routine cancer care.”
While the majority of patients referred to the Supportive Care Clinic (SCC) are approaching the end of life, 24 percent of them are receiving treatment with curative intent.
A new-patient appointment typically takes 90 to 120 minutes. The nurse practitioner administers the history and physical, followed by a social worker who takes a psychosocial assessment. They meet with Bell together to decide the patient's care plan, and he presents it to the patient.
The plan addresses the patient's understanding of the disease and prognosis; physical symptoms; psychosocial/practical issues; spiritual and cultural issues; and advanced care planning, including end-of-life wishes and plans for hospice.
“We need multiple eyes on that patient from different disciplines to really understand what that patient needs,” he said. “The oncology nurse practitioner understands the cancer, the treatment, and the side effects, and the oncology social worker knows the resources that are available in the community. And I approach this from a palliative care perspective, focusing on pain management and advance care planning.”
Although most patients have only one or two visits to the palliative care team, they have ongoing support by telephone. The RN calls patients who have high pain scores to check their status; other patients call into the clinic if they need help, and are then immediately referred to a member of the SCC team. “We do the follow-up on the care plan and take ownership of pain management and anxiety management,” Bell said.
Patients who had multiple visits to the SCC during its first year saw, on average, a 13 percent decrease in pain scores and a 17 percent decrease in Edmonton Symptom Assessment System (ESAS) scores between their first and last visits, Bell said. A patient survey found overall satisfaction with the program measured at 4.8 on a 5-point scale, and 100 percent of patients said they would recommend the clinic to others.
Benefits and Challenges
Despite the growing acceptance of palliative care, Bell identified several barriers to easy success:
- Choose the right name. Gibbs chose the name “Supportive Care Clinic” based on the idea that oncologists and patients might be wary of the term “palliative care.” After MD Anderson adopted the term “supportive care” for its palliative care services, referrals grew dramatically and the average time from registration to palliative care referred dropped from 13.2 weeks to 9.2 weeks, he said.
- Referrals. During the clinic's first year of operation, Bell had to devote a lot of time to recruiting referrals. Gibbs Cancer Center has 10 multidisciplinary planning committees that meet each week, and he attends a few of them to remind oncologists of the service provided. “It is getting easier, but I still have to do some marketing,” he said.
- Return on investment. Although Medicare does pay outpatient palliative care, the payment does not cover the cost of the services provided. However, the SCC reduces the time oncologists must spend on pain management and anxiety management for their patients. Indeed, research suggests that every patient referred to a palliative care outpatient clinic saves his or her oncologist 170 minutes. (J Pain Symptom Management 2013; 40:126-135)—“that's almost three hours that can be devoted to other patients,” Bell said.
This article is part of a continuing series on innovations in oncology practice. A collection of the series to date is available at http://bit.ly/OTInnovations
Research Reported at ASCO's Quality Care Symposium
The need to improve patients' access to early palliative care was one of the overarching themes of the American Society of Clinical Oncology's Quality Care Symposium. At the podium, almost every presenter mentioned early palliation as an essential component of high-quality care, and the topic was addressed in many research abstracts.
- A qualitative study of patients with advanced cancers and their caregivers found that early referral to palliative care was perceived as useful in several areas, including immediate symptom control and preparation for the future. The study was conducted by Breffni Hannon, MD, and colleagues at Princess Margaret Hospital in Toronto (Abstract 157)
- In another study, Hannon and colleagues also found that in interviews, patients said they perceived distinct and complementary roles for palliative care and medical oncology. The researchers said they believe this supports the relevance of early referral to palliative care (Abstract 138).
- The majority of patients do not feel sufficiently informed about palliative care before being admitted to an inpatient palliative care unit, according to a survey of patients recently admitted to one. Benjamin Storek, MD, and his fellow researchers at Charité-Universitätsmedizin Berlin in Germany say the findings confirm the importance of early integration of palliative care in addition to cancer care (Abstract 18).
- Safiya Karim, MD, and Shahid Ahmed, MD, of the University of Saskatchewan conducted a study to determine if referrals to palliative care increased after Jennifer Temel, MD, published the results of her landmark study finding that patients who receive early palliative care had a better quality of life, less depression, and longer survival than those who did not (OT 9/25/11). The Canadian researchers found, though, that publication of that research did not influence referral patterns to palliative care at their center; they also found no survival benefit for patients who were referred to palliative care (Abstract 39).
- A retrospective chart review of patients diagnosed with Stage III or IV colorectal cancer at New Hanover Regional Medical Center in Wilmington, N.C. found that patients were equally likely to receive aggressive care at the end of life regardless of whether they were enrolled in early palliative care. “While early palliative care has been recommended as a quality care measure, patient and physician factors may limit its effectiveness,” Jessica Ann Reifer Hildebrand, MD, and colleagues concluded (Abstract 168).