Photo by Todd McNaught
A cancer diagnosis is a life-altering event, which comes with countless treatments, sleepless nights and hopes for remission. It can all be very overwhelming, and many patients must deal with the additional burden of physical pain. Not every oncology patient experiences pain, but it is common, and the Seattle Cancer Care Alliance (SCCA) Pain Clinic is working to manage it, one patient at a time.
Having a clinic dedicated to pain helps patients and oncologists get the most out of appointments. "When their visits with the oncologist are used primarily focusing on pain, then it's time to separate the two and have us manage the pain issue, and then the oncologist can focus more on the disease and treatment," said Ellen DeBondt, a registered nurse who staffs the clinic.
The clinic concept was first developed in the Cancer Center at the University of Washington in 1997 and was originally designed to help a handful of patients with pain problems that couldn't be managed by other providers. In the near decade since, and with the opening of SCCA, it has grown to help hundreds of SCCA patients. Dr. Dermot Fitzgibbon, an anesthesiologist and director of the pain clinic, estimates that every year, the staff accepts nearly 100 new patients, and sees about 300 returning patients. Fitzgibbon also runs another clinic at the University of Washington, where the numbers are similar. Despite the high volume of patient visits, each patient is sure to receive personalized care. DeBondt estimates that a first visit will usually take about two hours. "We're not really just looking at pain, we're looking at the big picture and how everything ties in together," she said.
Looking at the big picture has created a unique setting for SCCA Pain Clinic patients, who are treated with interdisciplinary care. Doctors, nurses, pharmacists, social workers, a physician assistant, pain fellow and rotating pharmacy residents work as a team to identify and manage pain. "I think what makes our program unique is that we have a group of individuals dedicated to managing these patients," Fitzgibbon said.
Oncology pharmacist Deborah Frieze agrees, "I think that's really the key. Because pain is such a multi-factorial issue, you can't just take care of it from necessarily the medicine side." She said that it's important to work with the complete person from different angles; by having so many professionals involved, providers can look at the whole person. One of the biggest challenges to treating pain is that it is often an elusive target, and there is no one-size-fits-all treatment. "You can take two patients with the exact same kind of cancer and they're going to have dramatic, completely different pain complaints, and dramatically different needs," Frieze said.
Referrals to the pain clinic are limited to SCCA patients and are based on referrals from SCCA providers. If the primary care provider feels the pain needs of the patient aren't being met, the provider can refer the patient to the pain clinic. Because admittance is not based on intensity of pain or medication use, a wide range of SCCA patients are seen.
By having professionals from a variety of backgrounds focus on cancer care, the clinic is able to provide a comprehensive approach to pain management. Frieze spent two years in oncology training after pharmacy school, and said she is able to help provide continuity of care between the oncology needs and the pain needs of patients. She assists patients with not only their medications, but helps them evaluate their financial abilities and determine which drugs are more affordable and which drugs their insurance will cover. Her job is also unique in that she has prescriptive authority, which means that after a patient sees a doctor, Frieze can provide prescriptions on a day-to-day basis.
Working collaboratively benefits the staff as well. "The success of the pain clinic, I think, largely rests on a good working relationship with the oncology clinic," Fitzgibbon said. As an anesthesiologist, Fitzgibbon said he had no expertise in oncology, but by working with oncologists and disciplines like pharmacy and nursing, he has been able to better understand oncological processes. "I think what I can bring to the table as a physician is that I'm familiar with all the options available to patients for effective pain management," Fitzgibbon said. While it may seem mundane, he said, using medications effectively is difficult and extremely time consuming.
About 90 percent of pain clinic patients are using medication to treat their pain, Frieze said, and it's important to look at the quality of life and the functionality of those patients. "It's certainly not appropriate to overmedicate somebody so they don't have good quality of life because they're unable to function because they're overmedicated," she said. So providers at the pain clinic examine other options including physical therapy, and possibly interventional options for pain control such as nerve blocks and spinal opioid therapy. The clinic's social worker, Christy Aplin, does an assessment to look at psychosocial needs including counseling or access to community resources. "We certainly look at the patients to see what our best options are," Frieze said.
Tying all the efforts together is the nursing staff, Fitzgibbon said. Two nurse case managers for both clinics structure the long-term care of patients and coordinate care between doctor visits. DeBondt said they see patients return every three to six months, and in that time, they must do assessments over the phone to make sure the pain is stable and the prescriptions are appropriate. Checking in regularly with patients is a must, because it's important for the staff to understand how the disease is progressing and if there have been any changes in the disease or the treatment. DeBondt said they have to keep tabs on the balance between pain management and functionality to ensure quality care.
The clinic continues to grow exponentially, making the future somewhat uncertain. "We are at a stage now where we have a waiting list for patients to be seen, so I think we may have to reorganize for future consultations and to expand our referral base. Additional dedicated personnel to the pain clinic is almost a necessity at this time," Fitzgibbon said. But the staff plans to continue the collaborative efforts to make life more livable, one patient at a time.