The 2016 NCCN Annual Conference included a push to find more effective ways to encourage and deliver palliative care services across a variety of settings in oncology.
Toby C. Campbell, MD
The 2016 NCCN Annual Conference opened today with a spotlight on finding more effective ways to encourage and deliver palliative care services across a variety of settings in oncology, with an eye toward introducing these services earlier in the cancer care trajectory, facilitating better provider—patient communication, and improving overall patient and caregiver quality of life.
“Palliative care has a lot of different aspects,” acknowledged panel moderator Toby C. Campbell, MD. He said the practitioner community needs to focus on cutting-edge palliative care, “as we build the infrastructure to meet palliative care needs of cancer patients…upstream from end-of-life care and hospice.”
Campbell, an associate professor of medicine at the University of Wisconsin School of Medicine and Public Health, is both an oncologist and an expert in palliative care. In the panel discussion, he delineated the many levels of palliative care: primary palliative care (such as what primary care doctors provide), secondary palliative care (what all oncologists provide), and tertiary palliative care (expert-level palliative care).
Patients with cancer who are hospitalized in an inpatient oncology unit typically have a relatively short life expectancy, noted Campbell, “but palliative care programs are now moving to ambulatory or outpatient divisions. While most models are referral-based, they are not successful due to high ‘no-show’ rates,” he continued. “Then there are the programs built into the patient’s treatment.”
A Caregiver Speaks
Finally, “there is also home-based palliative care, which is where I think the future of palliative care is.”Setting the stage for the morning’s discussion was panelist Shirin Malekpour, PhD, a math educator at the University of Wisconsin-Madison, who, along with her family, cared for her mother, a pediatric hematologist/oncologist based in Iran, after she was diagnosed with stage III ovarian cancer in January of 2012.
“Although my husband was aware of palliative care, being a hematologist himself, and my mom also a doctor, we were so physically and emotionally drained, that we did not know the right questions to ask,” Malekpour said. She added that the medical team at the hospital was underprepared for palliative care.
Finding the Time, Defining Roles
Malekpour described an incident that occurred during her mother’s treatment: “One night a fellow came late to the hospital when [my mother] was vulnerable and alone. He got a [do not resuscitate] signature from her. It made us really upset…not that we did not agree with her decision. It was just how it was handled.” She said that was the time when they obtained palliative care for her mother, but only because her husband was a part of the team.Carri Siedlik, APRN, ACHPN, a nurse practitioner in the Palliative Care Program at the University of Nebraska Fred & Pamela Buffett Cancer Center, noted that discussing palliative care requires a major time commitment, and oncologists often don’t have time to sit down to discuss issues beyond the actual treatment.
“Just looking at what people talk about, the content analysis studies suggest there’s very little redundancy,” between what oncologists discuss and what palliative care specialists bring up with patients, Campbell concurred.
“Palliative care conversations are usually about psychological, emotional, and physical symptoms; goals of care, and coping strategies,” Campbell said. An oncologist’s conversations, on the other hand, would be much more clinical and related to such issues as trials, therapy options, as well as some symptom discussions.
Sophia Smith, PhD, MSW, stressed the importance of teamwork. Smith, an associate professor in the School of Nursing at Duke University, said it is very difficult for oncologists to have all of these conversations with the patient in 15 minutes, a reality that underscores the multidisciplinary aspect of palliative care: “social workers, palliative care experts, oncologists, nurse practitioners…there’s an entire team involved.”
Do oncologists perceive these other practitioners as a threat to the patient—oncologist relationship?
It is about building a relation with the oncologist, replied Siedlik. “Some of them at our hospital do see us as a threat. I always make sure, though, that the oncologist is comfortable with my role…I have built that relationship with them.”
Maria Dans, MD, who serves as Director of Palliative Care Services at the Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis, agreed, explaining that she always consults with her patient’s physicians. “I definitely do not want to threaten that relationship. I also find it helpful to open the conversation with the patient or the family, as well, if I tell them I spoke to their primary doctor,” she continued.
Breaking Down Other Barriers to Palliative Care
“I always try to separate my oncology hat from my palliative care hat to ensure I don’t tread on the primary oncologist’s realm,” Campbell said. Rather, he asks the patients to share what their primary oncologist recommended in terms of their clinical care.A poll of the audience taken during the session elicited another barrier to delivering palliative care: patients may want to give up their clinical treatment.
“We found that patients were more likely to participate in a clinical trial if they were seeing a palliative care specialist,” Campbell said in response to the poll results. “So, at the University of Wisconsin, we have found a flip side to what the audience identified as a barrier.”
Smith said that she has found that survivors often feel rejected by their oncologists. Survivorship care could be converted into a team effort, according to Smith, where the oncologist, the palliative care specialist, and the social worker continue to care for the survivor. “A lot of what we do in survivorship is palliative care, so a lot of parallels can be drawn.”
Finances can be another stressor in the patient care continuum and should be factored into other patient symptoms as part of palliative care discussions. Campbell noted that when financial toxicity is included along with other physical symptoms (for example as part of a distress thermometer, Smith added), it encourages patients to open up about their financial distress.
Duke has been partnering with Reimagine, a program which educates patients on four typical conversations on palliative care. It provides online content and group-facilitated meetings led by a social worker. Patients can conveniently get together with their peers, online. The end goal, Smith explained, is not only to improve the situation for patients and caregivers, but also to enhance their communication with providers.
Surabhi Dangi-Garimella, PhD, is a writer and editor for the American Journal of Managed Care, Evidence-Based Oncology. Read more at AJMC.com.