While palliative care is growing in recognition — as our recent NEJM Catalyst Insights Council report shows — getting services to patients in need of them remains a tough task. According to our Insights Council survey, 80% of organizations have a palliative care/end-of-life program, but 60% of patients who could benefit from the services don’t receive them.
“Why don’t people call the palliative care team more often? Some people think we’re just for end of life, and that’s a barrier we have to overcome,” says Jessica McFarlin, MD, Division Chief of Palliative and Supportive Care at the University of Kentucky College of Medicine in Lexington.
McFarlin, who came to the university in 2016 when palliative care services were handled by the local hospice organization, gathered a multidisciplinary team of clinicians, a chaplain, and a social worker to bring complex medical decision assistance, symptom management, and other palliative care services in-house. The team is supplemented by “the full resources of the hospital,” including music therapy, pet therapy, massage therapy, and departmental pain management groups.
Last year, McFarlin’s team consulted with 1,700 patients, resulting in a 4.2% penetration rate. McFarlin attributes some of that rise to having fellows and residents from multiple disciplines round with the palliative care team and getting “face time” with all departments. Rather than instituting formal triggers for palliative care consults, she is doubling down on awareness and education. “If I’m forcing providers to automatically call us, then I’m not instilling trust,” she says.
Conversely, Suzana Makowski, MD, MMM, Chief of Palliative Care at Exeter Hospital in New Hampshire, finds that triggers, such as a sudden change in PDSA cycles (Plan-Do-Study-Act), are necessary, and have helped the hospital go from a 5% penetration rate in access to palliative care services to around 11%.
“One of the most challenging barriers was getting providers over their resistance to the word ‘palliative,’” she says. Providers also needed to recognize the palliative care team as a partner to engage in difficult medical decision discussions. “Some clinicians feel they should be the ones having these conversations and don’t understand the value of our specialty,” she says. “We had to educate them that we weren’t just a path into hospice . . . and are able to support patients early in the trajectory of their illness and prognosis.”
McFarlin is excited that palliative care is gaining traction beyond the oncology world. At the University of Kentucky, dementia patients have been an area of growth for her team — so much so that the team helped facilitate an advanced care planning workshop for patients in that department, showing providers how palliative care can help and how to bill for these services.
Her goal going forward is to teach as many health care professionals as possible — not just clinicians — the benefits of palliative care early in a diagnosis. Her advice when she speaks to other hospitals looking to start such a service is to look within. “Look around and see what staff you have and what related services already exist,” she says. For instance, social workers and chaplains can be of great use in palliative care.
Staffing is always one of the biggest obstacles to palliative care, according to Makowski, and our survey respondents agree — 45% say finding and hiring trained palliative/end-of-life care specialists is difficult. “Some places say they have palliative care when in reality they have one nurse offering the service,” she says.
Hospital executives have thrown their full support behind Makowski and her team, which includes three nurse practitioners covering the heart failure clinic, the oncology department, the emergency department, and the main hospital, and a social worker. A hospital chaplain also collaborates with the team. If she were to redesign the structure, she says she’d likely put more resources toward outpatient clinics and post-acute stays.
William Mitchell, MD, Director of Palliative Care at the University of California, San Diego, generates talent through a hospital-based fellowship program, enabling him “to take the pick of the litter.” Mitchell is wary of building programs on grants, gifts, and other short-term philanthropy because he believes they should become part of the fabric of the institution. “Money spent on futile efforts at the end of life can be better spent creating quality of life earlier in a patient’s trajectory,” he says.
It’s a philosophy extended to all bone marrow transplant patients, for example. “As a group, these patients are uniformly very ill. While some will recover and go on to live the rest of their lives with quality, others will not. Some will be cured but have severe consequences. At the beginning, these groups all look like each other and that’s how we treat them,” he says, explaining the use of symptom management to address patients’ grief, anxiety, and demoralization.
Plus, he adds, “most programs are small and remain small because the billing and collections associated with them aren’t enough to pay for palliative care teams. It’s labor-intensive work and there aren’t mechanisms for reimbursement.” As for expansion beyond oncology, he’s hopeful, but knows he has to prove the merit of palliative care.