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Leading by Example: How the University of Rochester’s Neuropalliative Care Service Expands Treatment Possibilities
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With few neuropalliative care services available in the US, the University of Rochester stands as a prime example of how a successful program can transform patient care.
Benzi Kluger, MD, MS
Palliative care is a specialty of medicine that aims to improve quality of life for individuals with serious or advanced medical conditions by assessing and managing symptoms, establishing goals of care, providing support to caregivers, and engaging in advance care planning discussions.1 Since the turn of the century, neuropalliative care has become an emerging subspecialty that serves as a unique piece of the wider care paradigm, to the point that formal organizations, fellowship programs, and care centers have been established, and a greater number of clinicians have begun to implement aspects of this model in their own care regimens.
Headed by Benzi Kluger, MD, MS, the Neurology Supportive and Palliative Care Service at the University of Rochester stands as one of those few established neuropalliative care programs in the United States. Kluger, who also serves as a professor in the Department of Neurology and Department of Medicine, was recruited to the facility in 2020 from the University of Colorado to build upon previous work in developing models of neuropalliative care for Parkinson disease (PD) and other neurodegenerative illnesses.
"The key is to have at least 1 person who’s a strong champion for the cause," Kluger told NeurologyLive®. "If there’s that person and they’re willing to be creative and persistent, then I think success is inevitable. In my work at Colorado and Rochester, as well as lessons I learned from Janis Miyasaki, MD, MED, FRCPC, FAAN—who started one of the first clinics in Canada—having a team with complimentary skill sets is important."
Miyasaki, an esteemed leader in neurology, initiated the first neurologist-led palliative care clinic at the University of Toronto in 2007.2 Since then, she has spread her wisdom to several other neurologists and movement disorder specialists interested in starting their own clinics, and has established herself as one of the leading voices in the realm of neuropalliative care.
At the University of Rochester, one of the core aspects of the neuropalliative care service is treating the total pain of illness—meaning not just the physical and mental symptoms, but also the psychological, social, and spiritual aspects of what a patient and their family are going through. The faculty is comprised of several different subspecialties, including those who work as administrators, community and patient advocates, and registered nurses. In addition, there are numerous physicians and advanced practice providers on-staff who have backgrounds in palliative care as well as in neuromuscular disorders, movement disorders, stroke, memory care, general neurology, child neurology, and neuro-oncology.3
There are several social work and spiritual/family support staff members in the program, including chaplains and mental health therapists, such as Sue Ouellette, PhD. Ouellette, who’s been with the program for several years a chaplain, is also a licensed marriage and family therapist, with a special interest in working with individuals with disabilities and their families. She is fluent in American Sign Language (ASL) and conducts sessions in ASL when appropriate.
Sue Ouellette, PhD
"Chaplains are one of the most misunderstood professions in the medical field,” Ouellette said. "People tend to think that chaplains are either members of the clergy, or that we volunteer to come in and give certain rights or practices for patients, and that couldn’t be further from the truth. Chaplains are trained to be spiritual care specialists. We would like to believe that all providers think about physical wellness, emotional wellness, and spiritual wellness as all integral to the patient’s overall wellness."
Spirituality is unique to each individual and may or may not include the practice of a given religion. It can manifest in myriad ways, including traditional religious forms or nonreligious sources of meaning, purpose, and connection. As patients with neurologic illnesses learn to cope with their changed reality that can include relentless progression of symptoms and/or ailment, some will experience spiritual distress that can include feelings of despair, demoralization, loss of meaning and dignity, and for some, the loss of the will to live and desire for hastened death.4 All in all, this can provide a challenging landscape for patients to operate within and it can be difficult for physicians to help patients navigate it alone, all of which highlights the need for individuals like Ouellette to be part of the care team.
"As a nonphysician on this team, I feel as welcomed and valued as anyone else. That’s embedded not only in the personalities and people involved, but in the concept of neuropalliative care," Ouellette added. "Quality of life, spiritually, and joy all have to go together, and I think that’s a wonderful way to practice medicine."
Throughout his time in medical school, Kluger cared for patients with debilitating neurological disorders, including supranuclear palsy, PD, and Lewy body dementia, among others. The lack of available effective treatments for these disorders and a feeling of helplessness began to take a toll on Kluger, prompting him to do what he called “soul searching.” He decided to tap into his spiritual side, taking an interest in Buddhism and spending time a monastery.
"I wouldn’t necessarily call myself a Buddhist, but I did learn a lot about life and suffering through these explorations," he said. "It helped me to be able to be open with suffering, and in some ways, opened myself to making medicine a spiritual practice. Between those 2 tools, I reinvigorated my career. I used to go home with my head hung low, feeling bad at the end of the day, and now, I feel like I’m able to provide help for the same patients and their families."
He added, "I routinely write condolence cards to patients who pass away and it’s not because I’ve become a worse neurologist, but it’s because I’m now providing valuable care to people all the way through hospice. That ability to not abandon people, to have difficult conversations, and to provide care, no matter what’s happening in a patient’s life, is really valuable. In talking to other neurologists, that resonates with people. People feel a deeper, almost existential, or spiritual calling, to more directly engage in suffering and the things that are most important to the patients and the families that they’re seeing."
Alex Clarke, LCSW
The range of specialists available, involvement of physicians’ assistants, and incorporation of social workers has allowed the neuropalliative team to prevent a patient from being siloed into a single medical or mental health model. Following a basic examination, patients receive individualized approaches that can be altered at any time, said Alex Clarke, LCSW, a social worker for the outpatient neurology department, a division that includes the neuropalliative care program.
"The approach does, and should, change, whether that’s due to differences in patient personalities, differences in their diagnosis, or what stage you meet that patient in," Clarke noted. "Some approaches are very family involved because that person might be struggling with the ability to advocate for themselves, or they might be physically struggling with the ability to speak for themselves or their community. There are other times where it’s important to make sure that you’re propping up and encouraging as much independence from that patient as possible because that plays a lot into their sense of quality of life, and sense of individualism."
The program is mainly comprised of patients with PD, although there are referrals for individuals with amyotrophic lateral sclerosis (ALS) and other debilitating conditions. Neuromuscular experts primarily handle the treatment of patients with ALS, although clinicians can refer to the neuropalliative care division for an added layer of input and support. Other conditions that have begun to enter the fold of neuropalliative care include dementia, brain tumors, Huntington disease, and Duchenne muscular dystrophy.
In addition to providing life-altering care, there are several research programs dedicated to improving the delivery and receipt of neuropalliative care. Led by Kluger and Seshadri, the Neuropalliative Care Research Lab (NPCL) is comprised of students, faculty members, and others interested in neuropalliative care. The NPCL provides opportunities to collaborate on research, develop research ideas, data collection and analyses, and dissemination of neuropalliative care research findings.5
One such program, funded by the National Institute on Aging (NIA), is directed towards developing, implementing, and distributing palliative care interventions to improve standard of care for older adults affected by neurodegenerative illnesses. Another NIA-based research project involves improving care partner outcomes through positive connections. Supported by the University of Rochester Medical Center’s Roybal Center for Social Ties and Aging Research, this project uses the Life Enhancing Activities for Family Caregivers (LEAF) intervention and adapt it to a group setting by tying LEAF skills to social connections in order to support family care partners in discovering positive emotions, self-efficacy, and meaning in caregiving, and to combat social isolation.
The division also has close associations to several organizations, including the Parkinson’s Foundation, Davis Phinney Foundation, Michael J. Fox Foundation, Family Caregiver Alliance, and the Alzheimer’s Association. Since 2020, along the Parkinson’s Foundation, the research team has been working with healthcare professionals at 33 academic and private clinics across the United States to provide education and coaching on using a palliative care approach to the care of those with PD. Funded by the Patient Centered Outcomes Research Institute, the project aims to make outpatient palliative care the new standard of care for PD.5
"Something I think about a lot is cultural change," Kluger said. "If we can convey how important palliative care is to improving the quality of life for people with neurologic illnesses, that becomes a powerful tool that we can use to help change systems, to change billing to get support for teams. If palliative care continues to live under the shadow that it’s about giving up or that we need to wait for the right time to have these discussions, then we’re always behind the 8-ball."
He added, "There is still a lot we can learn about. What are the needs and preferences of patients and families? What are the most effective models and treatments? Big picture, thinking about implementation and dissemination, what are the best and most effective ways to implement this model of care?"
Although neuropalliative care is still a relatively new field, Kluger feels there are plenty of opportunities for growth and improvement. Kluger, who also serves as the president of the International Neuropalliative Care Society, believes that education is critical, not only for residents and fellows still in medical school, but for palliative care doctors and hospice providers.
"I would predict that this is going to become part and parcel of neurology, just like headache disorders, movement disorders, and other subspecialities that we take for granted," Kluger said.
