In 2007, the Billings Clinic Cancer Center in Billings, Montana, became one of 15 community-based oncology centers nationwide to receive funding from the National Cancer Institute (NCI) to expand programs for clinical trials, health-care disparities outreach, survivorship and palliative care, multidisciplinary care, and electronic health records to improve patient access to the most effective cancer care. As part of that initiative, in 2010, Jeannine M. Brant, PhD, APRN, AOCN®, Oncology Clinical Nurse Specialist and Nurse Scientist at the Billings Clinic Cancer Center, and her colleagues developed a symptom management clinic that includes an interdisciplinary team of physicians, physician assistants, nurses (including an oncology and psychiatric nurse practitioner, supportive care nurse navigator, and clinical trials coordinator), social workers, dietitians, and physical therapists. The team offers a broad variety of services to improve physical and emotional quality of life for patients with cancer while they are undergoing treatment and throughout their survivorship.
A pain and symptom management specialist, Dr. Brant recently completed a study examining pain care quality in 326 U.S. hospitals1 and was appointed to an NCI Executive Committee of the Middle East Cancer Consortium (MECC), which oversees palliative care services in countries in the Middle East, including Cyprus, Egypt, Israel, Palestine, Jordan, Turkey, and parts of Northern Africa. Dr. Brant is Editor of ONS Standards of Oncology Nursing Practice and a new edition of the ONS Core Curriculum, and is Associate Editor of the Journal of the Advanced Practitioner in Oncology.
The ASCO Post talked with Dr. Brant about how she is instituting palliative and supportive care services in the Billings Clinic Cancer Center, assessing and managing patient pain in the hospital setting, and bringing palliative care programs to the Middle East.
Multitude of Services
Please talk about how you have incorporated palliative care services into your program at the Billings Clinic Cancer Center.
We initially implemented distress screening and looked at information from nearly 1,400 patients in our database. We found that 67% of our patients had problems with fatigue—that was number 1 on the list—followed by pain, sleep disturbances, neuropathy, dry and itchy skin, and memory and concentration problems. Twenty-one percent of patients reported having emotional problems, including depression, anxiety, and fear.
As we started analyzing the data, the information became the foundation for the supportive care work we do. Although National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines on distress management say any patient with a score of 4 or higher should be monitored for symptoms of psychosocial distress, we thought following that many patients would overwhelm our staff, so our supportive care nurse navigator started monitoring patients with scores of 6 or higher on the distress thermometer.
Our cancer center is located in Montana, the fourth largest but one of the least populated states in the country. Many patients have to drive hundreds of miles to get here, and often their symptoms arise between visits. We developed telephone triage protocols to assess and manage physical or emotional symptoms for patients who could not come to the clinic. We also recognized that we needed to establish a regular day and time for patients whose symptoms could not be managed over the phone to come to our supportive care clinic and meet with members of our interdisciplinary team in person.
We added interdisciplinary chart rounds on the day we see patients for palliative care services. This provided us with the opportunity to review their records before we met with them and discuss their challenges, such as nausea, vomiting, fatigue, or pain, strategize options, and determine which specialists they may need to see that day. In addition, our clinical trials coordinator looks for available cancer center supportive care trials that match with patients’ care needs.
We also counsel patients on establishing advanced directives and offer dignity therapy, so patients have a chance to put their story in writing and pass on their legacy.
When we first launched the supportive care program in 2010, we saw 80 patients the first year. Today, we see over 100 patients a month.
Pain Care
Please talk about the in-hospital survey you codeveloped and disseminated nationwide to examine pain care quality.
My research collaborators at the University of Utah and Dartmouth Hitchcock Cancer Center developed pain care quality surveys through a series of psychometric studies. Using the prototype of 20 questions, we surveyed over 20,000 hospitalized adult patients on 1,611 nursing units throughout the United States, 114 of which were oncology units. The mean pain score of the oncology patients (n = 810) was 5.7 on a scale of 0 to 10, and 25% of patients reported being in frequent or constant severe pain more than 50% of the time.
A meta-analysis of randomized controlled studies among adult patients with cancer found that pain is one of the most common symptoms experienced by patients and estimated that its prevalence is 53%.2 The percentage of patients with metastatic disease is 64%, with over one-third of patients rating their pain as moderate to severe.
The take-home message is that we have spent 30 years trying to manage pain, and patients are still complaining of poor pain control. We have to do a better job of controlling pain in patients with cancer. Current guidelines, such as those available through the American Pain Society (APS) and the NCCN, exist to guide clinicians in the assessment and management of pain and are very effective when used appropriately.
At tumor board meetings, the question often asked is, “What do the NCCN guidelines say regarding the management of this cancer?” But I wonder how often we ask, “Are we managing pain according to the APS or NCCN guidelines?” Establishing protocols for the management of specific pain syndromes or intractable pain can increase the consistency and quality of pain management. At our clinic, we use both an acute pain PCA [patient-controlled analgesia] titration protocol and an intractable pain titration protocol, both of which expedite the time to comfort and promote patient satisfaction.
Middle East Initiative
Please talk about your appointment to the NCI Executive Committee to bring supportive and palliative care services to Middle Eastern countries.
MECC is committed to promoting quality palliative care to patients with cancer throughout the Middle East. Because so many doctors and nurses in the Middle East are from war-ridden countries and don’t have access to a lot of opioids and strategies for pain and symptom management, they are in different points of progression in terms of providing supportive and palliative care services to patients.
We meet two or three times a year with physicians, nurses, and social workers in over 15 countries across the Middle East and into Northern Africa and conduct educational workshops. In April, ASCO, in collaboration with MECC, held the ASCO International Palliative Care Workshop in Ankara, Turkey.
At these meetings we discuss the barriers and cultural challenges that health-care teams face in bringing palliative care to patients. Palliative care is very much in its infancy in these countries. Physicians and patients in this area of the world commonly think of palliative care as being synonymous with end-of-life care, though there is a movement to integrate palliative care earlier into the disease process.
During these workshops, there is a very active exchange of ideas about “truth telling” and whether patients should be told that they have cancer or that they are dying. We facilitate the exchange of ideas and are starting to see good progress. For example, although the use of do-not-resuscitate orders is prohibited in some Middle Eastern countries, physicians in other countries in the region are starting to allow patients to die naturally.
Local leaders from each of the Middle Eastern countries provide palliative care progress reports at MECC’s interdisciplinary annual meeting. It is exciting to hear about their success stories in the development of palliative care teams and palliative care units, the dissemination of palliative care education, and the integration of palliative care education into nursing schools and hospital settings. We have seen some very positive changes over the last few years.
I feel privileged to be part of this important work, and I’m honored to work with MECC and the health-care providers in the Middle East as they advance palliative care throughout the region. The programs being established in the Middle East could certainly become role models to further palliative care in other parts of the world. ■
Disclosure: Dr. Brandt reported no potential conflicts of interest.
References
1. Pett MA, Beck SL, Guo JW, et al: Confirmatory factor analysis of the pain care quality surveys (PainCQ©). Health Serv Res 48:1018-1038, 2013.
2. Gorin SS, Krebs P, Badr H, et al: Meta-analysis of psychosocial interventions to reduce pain in patients with cancer. J Clin Oncol 30:539-547, 2012.
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Senior Director of Education, Science and Professional Development Department.
