The emerging specialty of neuropalliative care faces several obstacles to scaling and reaching more patients.
A huge need exists for neuropalliative care, Dr. Claire J. Creutzfeldt at the Harborview Medical Center’s Department of Neurology told Palliative Care News. Neurological illnesses result in a change in not only physical health, but also mental health as social roles shift. Palliative care offers support for a variety of symptoms through interdisciplinary care.
“Stroke is life altering for everyone,” said Creutzfeldt, who sees about 500 stroke patients admitted to Harborview annually. “We already have a palliative care need [for pain and symptom management]. But, in addition, stroke leaves people with huge changes in identity. A big ethic of palliative care is alleviating pain and physical, psychological, emotional, social and spiritual stress.”
Dr. Farrah Daly, owner and founder of Evenbeam Neuropalliative Care LLC, told Palliative Care News that the current demand for neuropalliative care is “just the tip of the iceberg.”
“So many people with neurologic illness become distanced from the health care system,” Daly said. “Once they become homebound, if they’re not eligible for end-of-life care, they often have very limited resources, and they disappear from the eyes of the health care system.”
Daly said her local area has a greater demand for services than Evenbeam can currently meet, especially as more patients become aware of neuropalliative care.
“And even with that,” she said, “we’re only seeing a small piece of what’s really out there in terms of people in need.”
Obstacles to growth & overcoming them
Providers encounter multiple barriers to scaling neuropalliative care, Creutzfeldt and Daly agreed. These include research, education of neurologists, the number of practicing specialists and regulatory issues.
“We need to raise awareness of the unique neuropalliative issues our patients and their families face,” Creutzfeldt said. “Awareness needs to exist among all providers — primary care, neurologists, administrators, etc. We have evidence to show that early cancer palliative care interventions improve outcomes. We need more evidence to show it works for neurological illness, too.”
On the research end of things, the International Neuropalliative Care Society (INPCS) was founded in 2020 to help address these challenges and to bring attention to the specialty. The organization recently concluded their third annual conference in September 2023 and an inaugural neuropalliative care research symposium in April.
“We talked about how to integrate health equity research into neuropalliative care,” Creutzfeldt explained. “We had family care partner representatives who told us their stories and why it’s important to include them in our research. We were able to fund 13 junior investigators to come to Denver to present research into neuropalliative care.”
To increase the number of specialists in the field, Daly said. it’s important for hospice and palliative care providers to build relationships with neurologists. While the neurologist may not be a palliative care specialist, that partnership is vital for the whole-body health of the patient.
Neurologists interested in expanding their knowledge of neuropalliative care can pursue a fellowship in palliative medicine, Daly said. They can also pursue a variety of continuing medical education and interest group programs offered through INPCS, the American Academy of Neurology or the American Academy of Hospice and Palliative Medicine.
Other ways of expanding their palliative care skills include mid-career palliative care training and communication skills workshops, Creutzfeldt explained.
“There is a very small, but increasing, number of fellowship trainings that are specialized in neuropalliative care,” Daly said. “Also, as more people want to increase their palliative knowledge without formal training, the INPCS is working to be the place for the information.”
The INPCS has made an Education in Palliative and End-of-Life Care Neurology (EPEC-N) curriculum freely available on its website for anyone who wishes to access it, from providers to patients to family members.
Medicare covers most expenses related to palliative care, but as with other health care services, reimbursement remains low. Additionally, more specialists are getting involved in hospice care, Daly added, but there’s a need for that in palliative care, too.
“Financial support is a barrier throughout the system that inhibits growth and outreach,” Daly said. “Specialist involvement needs to be supported by the regulation, whereas currently there are limitations in place in terms of the number or type of consulting physicians involved [in patient care].”
The INPCS is working with the National Institutes of Health, Congress and others to raise the profile of neuropalliative care and improve the regulatory environment for palliative care as a whole, Creutzfeldt and Daly said.
