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An Expanding Pool of Neuropalliative Care Specialists Drive the Founding of a New Society for Neuropalliative Care

Article In Brief

Interest in neuropalliative care is increasing among neurology residents, medical students, and even practicing neurologists, resulting in the establishment of the International Neuropalliative Care Society.

Farrah Daly, MD, a neurologist and palliative care specialist in northern Virginia, completed a neurology residency in 2007 and a palliative care fellowship two years later. But the start of her practice in those early days felt isolating. “On good days I felt like a loner as a neurologist subspecialized in palliative medicine,” she said. “And on bad days, I felt like a complete outsider to the entire system, and that there wasn't anybody else out there like me.”

Nearly 15 years later, that no longer is the case. The interest in neuropalliative medicine is growing, Dr. Daly and other neuropalliative care specialists told Neurology Today, particularly among medical students, neurology residents, and from people who are both early and later on in their practice. That interest has fueled the establishment of the International Neuropalliative Care Society (INPCS), which will begin accepting members this spring. The society is making plans for its first annual meeting, which will be virtual, November 4 to 6.

“We want to bring together medical professionals, but also family care partners and people who are living with neurologic disease so that their needs drive our advocacy efforts as well as our research efforts,” said Dr. Daly, a membership chair for the new organization.

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“There was a point when I could have told you on one hand whos doing it, but its just been kind of exponentially growing.”—DR. BENZI M. KLUGER

The INPCS president, Benzi M. Kluger, MD, MS, FAAN, director of the neuropalliative care division at University of Rochester Medical Center (URMC), moved to URMC in 2020 after establishing the nation's first neuropalliative care section within a neurology department at the University of Colorado School of Medicine in 2016.

He and other INPCS leaders envision bringing a wide range of professionals—nurses, physicians, chaplains, therapists, and social workers—together with caregivers and patients to share their experiences and expertise.

Only a tiny fraction of neurologists are trained in palliative care; few palliative care physicians are trained in neurology; few occupational therapists and other allied health professionals have expertise in neurodegenerative illnesses, said Ed Richfield, MBChB, PhD, a geriatrician in Bristol, England, who specializes in movement disorders.

“It's only by bringing all those people together that you can have a quorum of knowledge from which you can really grow,” said Dr. Richfield, chair of the INPCS clinical committee. “That's a real strength for this society.”

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“Frequently, patients in the later stages of disease are told there is nothing more we can do for you, and that is not true. Theres always something we can do to help relieve their symptoms, to address their fears, and to help their families cope with the challenge of their illnesses.”—DR. JANIS M. MIYASAKI

Dr. Daly said INPCS members see the new society as an additional support for the neuropalliative field to grow.

“We imagine staying actively engaged in our other society homes, be that AAN or the American Academy of Hospice and Palliative Medicine, which are both also doing excellent work in this area,” she said. “There's just so much work being done now that we need a dedicated home as well.”

Neuropalliative Care Is Growing

The new society is one of several signs that neuropalliative care is growing and maturing as a subspecialty. Another is a series of neurology-specific educational programs available online as part of Northwestern University's Education in Palliative and End-of-Life Care (EPEC) program.

The EPEC-Neurology curriculum includes extensive slide sets on 17 topics, ranging from “Communication and Delivering Difficult News” to “Palliative Care In Severe Acute Brain Injury” to “Prognostication in Neurological Illness.” The content is designed to help faculty members prepare presentations for trainees and to help physicians increase their own knowledge and to help faculty members prepare presentations for trainees.

“We want to train neurologists to be better at palliative care and train palliative care physicians to be better at neurology,” said Robert G. Holloway Jr., MD, MPH, FAAN, chair of the URMC neurology department at URMC and chair of the INPCS finance committee.

Yet another sign the field is maturing: The AAN's Pain and Palliative Care Section split last summer so that members interested in each of the growing fields have their own section.

Both subspecialties focus on pain management in patients with serious neurological illnesses but the two have become increasingly distinct over time, section chair Jessica Besbris, MD, a neurologist and palliative care provider at Cedars-Sinai Hospital in Los Angeles, said in a written statement.

“Pain management is just one component of the neuropalliative intervention, with increasing evidence for the benefits of non-pain symptom management, psychosocial and spiritual support, and advance care planning in our patient population,” said Dr. Besbris, vice chair of the INPCS education committee and co-chair of the Neuropalliative Special Interest Group of the American Academy of Hospice and Palliative Medicine. “The subspecialty of neuropalliative care has, in recent years, grown in the strength and number of our community, with an expanding body of literature to support both primary and specialty palliative care interventions for patients with neurological diseases.”

Janis M. Miyasaki, MD, FAAN, director of the Parkinson and Movement Disorders at the University of Alberta, started talking with colleagues about the potential for palliative care interventions to improve the quality of life for patients with Parkinson's Disease in 2007. The term “neuropalliative” had not been coined, and her professional peers did not immediately offer their support.

“People in movement disorders said, ‘That's not necessary, please stop talking about it, because it will upset patients,’” said Dr. Miyasaki, who also co-directs the university's Complex Neurologic Symptoms Clinic.

She obtained grant funding to investigate palliative care for people with Parkinson's disease and to start a clinic at the University of Toronto, where she worked at that time. As she began to get invitations to speak about work at professional meetings—“mostly out of curiosity, not because people believed in it,” she said—she found two groups to be particularly receptive.

“Young people would come up to me and say “Wow—this is so great!'” and nurses who provide telephone support to patients would approach me to say, ‘This is so important. Don't let anyone discourage you,’” Dr. Miyasaki said. “That really helped to sustain my conviction.”

Less than a decade later, both University of Colorado and URMC offer neuropalliative care fellowship tracks within their palliative medicine fellowship programs, and Dr. Kluger estimates that more than 100 physicians are practicing neuropalliative care.

“There was a point when I could have told you on one hand who's doing it, but it's just been kind of exponentially growing,” he said.

In 2015, Dr. Daly started a Google group list of palliative neurologists. “In the beginning, it was me, cold-calling people that I saw referenced in a paper here or there, introducing myself and putting them on the list,” she said. “But now, on a weekly basis, I'm getting new inquiries for information from medical students, from neurology residents, and from people who are both early and later on in their practice who think that they have been missing out.”

Dr. Holloway finds that medical students and residents are particularly drawn to neuropalliative care. For example, Anna Gershteyn, a University of Rochester School of Medicine and Dentistry medical student who learned about neuropalliative care during a neurology rotation, took a year off school to research palliative care practices from the perspective of both neurologists and their patients.

She plans to specialize in neuropalliative care because patients often live so many years with symptoms that can be palliated even as their disease progresses.

“When people hear I'm interested in neuropalliative care, they think of it as a depressing thing, but I think of it as hopeful because you can make such a difference in patients' lives,” she said.

MANY PRACTICE MODELS

As neuropalliative care programs proliferate, so does the variety of practice models.

At the University of Colorado Supportive and Neuro-Palliative Medicine Clinic, program director Christina Vaughan, MD, MHS, works with a physician assistant, a part-time chaplain, a part-time social worker, and a volunteer care-partner advocate.

“My preference is to see patients at the time of diagnosis, whatever their neurologic condition is,” she said. “If I see them early on, I can de-mystify what palliative care is because so many people mistakenly think it's all about end-of-life, and that's not the intent at all.”

Most typically, however, referrals come only after patients are suffering significant symptoms. In some cases, she will see a patient for a single visit to address a specific issue. More commonly, she shares a patient with another neurologist, staggering visits so that the patient is treated by, say, a movement orders specialist, as well as Dr. Vaughan, who is board-certified in both neurology and palliative medicine. And, in some situations, she becomes a patient's primary neurologist.

In her program, one trigger for a neuropalliative care consult is for patients preparing for deep brain stimulation.

“We want to make sure advance care planning has at least been started,” Dr. Vaughan said. “They are undergoing brain surgery which, of course, has risks, but we also use it as an opportunity to introduce palliative care for those who haven't otherwise learned of it; that's [true for] the majority.”

Dr. Miyasaki, a movement disorders specialist, staffs the neuropalliative care clinic at the University of Alberta, along with a palliative care physician, a nurse, and a pastoral psychologist.

“Frequently, patients in the later stages of disease are told there is nothing more we can do for you, and that is not true,” she said. “There's always something we can do to help relieve their symptoms, to address their fears, and to help their families cope with the challenge of their illnesses.”

At her clinic, the primary trigger used to identify patients for referrals is when neuro-psychiatric or neuro-behavioral problems associated with Parkinson's are requiring medication changes that compromise motor function. A second trigger is evidence of caregiver burnout.

“Sometimes they just need to be seen once or twice in the palliative care clinic,” Dr. Miyasaki said. “Others, particularly people who have the Parkinson's-like disorders – things like corticobasal syndrome, progressive supranuclear palsy, multiple system atrophy—transition to the palliative clinic and they stay with us for the rest of their course of illness.”

Dr. Daly, by contrast, is in private practice, providing care for patients with advanced neurodegenerative diseases where they live, whether it is a private residence, nursing home, or assisted living facility. She often treats patients during a period of several years after it has become too difficult for them to travel to an outpatient neurology office but before hospice care is needed.

“So their symptom burden is relatively high, but their diagnostic evaluation is complete,” she said. “And they need attention to symptom management for quality of life and to make sure that their treatment options are aligned with their personal goals and values.”

In the United Kingdom, patients with Parkinson's Disease are typically treated by geriatricians who subspecialize in movement disorders rather than neurologists. That was Dr. Richfield's career path, leading him to pursue a doctorate degree in palliative care in Parkinson's disease. His geriatrics practice includes a Parkinson's clinic which includes a palliative care service, which, he said, might be unique in the entire country.

“I'm not aware of any other geriatricians with interest in neuropalliative care in the UK, although there may be some,” he added.

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“Pain management is just one component of the neuropalliative intervention, with increasing evidence for the benefits of non-pain symptom management, psychosocial and spiritual support, and advance care planning in our patient population.”—DR. JESSICA BESBRIS

Neuropalliative Education

Neurologists, in general, have not been trained to manage the psychosocial needs of their patients, Dr. Holloway said. Rather, they are trained to treat disease without routine assessments of a patient's larger picture, including non-motor symptoms and social support.

“We take care of these patients as principal care providers, but we often don't take ownership of managing patients through very serious goals-of-care discussions,” he said.

The addition of URMC's neuropalliative care division is part of a movement to change that. More than 25 individuals including neurologists, residents, advanced care providers, nurses, social workers, and caregivers have agreed to serve as palliative care “champions” who want to learn more about palliative care for their own work and disseminate that knowledge within their divisions. A chaplain is on staff to provide spiritual support and counseling for patients. Residents are piloting a palliative care clinic, and several quality-improvement projects related to palliative care are underway.

“Our goal is to provide a palliative care approach to all patients, no matter where they are in their illness,” Dr. Holloway said. “It is the future of medicine.”

Link Up for More Information

• Creutzfeldt CJ, Kluger BM, Kelly AG, Lemmon M, et al. Neuropalliative care: Priorities to move the field forward https://n.neurology.org/content/91/5/217. Neurology 2018;91(5): 217–226.