Hollywood, FL—When patients hear the phrase palliative care, they sometimes feel their oncology team is "giving up on them," according to a survey of attendees at the National Comprehensive Cancer Network (NCCN) 21st Annual Conference.
The survey was part of an interactive roundtable discussion on palliative care, moderated by Toby C. Campbell, MD, MSCI, a thoracic medical oncologist and Chief of Palliative Care at the University of Wisconsin Carbone Cancer Center. The panel included several palliative care specialists and a mathematician whose mother died of cancer.
"The words palliative care are threatening to patients if they don't know what they are," said Carri Siedlik, APRN, ACHPN, a nurse practitioner in the Palliative Care Program at the University of Nebraska Medical Center's Fred & Pamela Buffett Cancer Center, in Omaha. "But once patients know what it is, they all want it."
Panelists agreed that the impression of "giving up" can be a formidable barrier to patients' acceptance of palliative care services, but one that can be overcome through enhanced communication. Maria Dans, MD, Director of Palliative Care Services at Siteman Cancer Center, Barnes-Jewish Hospital, in St. Louis, MO, said she proactively addresses the possibility that patients may feel this way. She tells them, "It is not about giving up but changing the fight as the disease progresses and priorities change."
Dr Campbell uses his patients' concerns as an opportunity to praise their valiant fight, with phrases such as, "Look at all the work you have been doing and all the chemo you have been through; giving up is not any part of who you are. This has always been about life, and you are not giving up on life!"
He also suggested digging deeper into their concerns, to discover what is driving the patient to want to live longer. "Get past the first question about not losing hope," he advised. "There is a lot of interesting stuff the next question down."
The best time to broach the conversation about palliative care and end of life is at the beginning of the patient's journey, according to Dr Campbell. "It is much easier to bring that up when you are not facing that decision right now," he explained. "I bring it up at the beginning and at every progression. Then, when it is time, it is not a surprise, [and] my patients are more prepared for it."
Addition of Palliative Care Need Not Weaken the Bond
In the audience survey, attendees at the session also felt patients dislike the idea of adding another physician to their personal team of providers. As explained by Sophia Smith, PhD, MSW, Associate Professor of Nursing at Duke University, Durham, NC, patients spend a lot of time, sometimes years, establishing a strong relationship with their oncologists and nurses and do not want this "family" bond to be weakened.
Indeed, according to Dr Dans, bringing in a palliative care specialist may actually strengthen the primary relationship. "It may be easier for someone else to start these hard conversations," she suggested, adding that ideally all members remain in the patient's inner circle. "No one wants anyone to make an end run around someone they have a relationship with," she said.
Ms Siedlik acknowledged the delicate balance that's required. She has made it a point to build and maintain good relationships with many oncologists, since physicians as well as patients could see newcomers as interlopers.
"I am always very 'consult cautious' and make sure I have good consult etiquette," she said, adding that she is trying to avoid being seen as someone who is there "to pull the rug out" from under the patient and treatment team.
Palliative Care Specialists Save Others Time
Referral to palliative care specialists can also benefit the oncology care providers by relieving them of the time-consuming conversations about goals of care and prognosis and of dealing with the aftermath of sometimes troubling news. While oncology providers spend most of their time on the treatment plan and management of symptoms, the panelists indicated that the oft-neglected emotional topics are the ones many patients want to focus on.
Dr Campbell added that when the oncology team acknowledges their time is limited for these critical end-of-life conversations, they should see this as an opportunity to refer patients to palliative care specialists for this service. "Some of these items are the domains of palliative care, and you may be assisted by members of the palliative care team," he said.
While palliative care has traditionally been offered through inpatient services, he indicated that palliative care services are now moving toward ambulatory or "outreach" settings. Still, when surveyed, the audience indicated that palliative care services are not as available as they would hope. Attendees ranked their number one barrier to providing palliative care services as "having limited or no access to palliative care where I practice."
Campbell T. Palliative care: providing comfort from a patient and provider perspective. Presented at: National Comprehensive Cancer Network 21st Annual Conference; March 31-April 2, 2016; Hollywood, FL.