The president of the International Neuropalliative Care Society provided perspective on the growth of the field of neuropalliative care, the organization’s role, and how clinicians are overcoming current barriers in place.
In early November, the International Neuropalliative Care Society (INPCS) hosted its second annual meeting, with a focus in on breaking barriers and building community. The organization, which has seen member recruitment rise in recent years, is dedicated to the promotion of palliative care for patients with neurological disorders, while recognizing that this growth will be interdisciplinary, international, and person-centered.
The recently concluded meeting featured a plethora of different topics, including why access to neuropalliative care remains a human rights and public health challenge, the implementation of neuropalliative care in clinics, and the challenges with expanding this type of care globally in areas with less resources. In addition, several attendees received honors, including the Lifetime Achievement Award presented to Kathleen Foley, MD, and the 2022 INPCS Outstanding Scientific Contribution Award presented to Laura Hanson, MD.
Following the meeting, NeurologyLive® sat down with Benzi Kluger, MD, president of INPCS. He provided an overview of the event, including the top themes and discussion topics in neuropalliative care, as well as ways the field has grown in the past decade. As part of a new edition of NeuroVoices, Kluger provided commentary on disease states that could see more use from neuropalliative care, the major differences in palliative care vs hospice, and the importance of maintaining a close relationship between the patient and clinician community to improve overall care.
Benzi Kluger, MD, MS: It definitely has. In my presidential address I had a slide that said “the tide is turning.” When I started doing this work, which was about 10 years ago, I was the only clinic in the United States that was doing this. There was less than a handful of people I could name in North America who were doing similar work, maybe less than 10 in the world. And that's really changed. There are a ton of people who are getting clinics set up, and there's an increasing number of medical students and residents who are very interested in this field and want this to be part of their career, whether it's the sole focus or part of their career. If you look at research publications, it's been an exponential increase. There were somewhere over 350 [publications] last year, and we're on track to have another kind of record-setting year this year.
Residency programs are taking education more seriously. Our education committee has done some amazing work. In June, they had a Train The Trainer program. For people who are educators and want to teach people palliative care, I would highly suggest that [program]. We had 26 people in our cohort last year. Roop Gursahani is running an international neuropalliative care certificate course out of India, and I believe has 40 or 50 people enrolled in that. Just to plant a seed, we are going to be having our first in-person meeting next year. I believe it's September 12 in Minneapolis, and we'll have our Train The Trainer session and our regular meeting. We'd love to see more people come to our community. The last thing is just the birth of the society and the growth of our membership. That's part of part of me thinking that the tide is shifting. This is a field now, this is a space, and It's growing. It's going to continue to grow over the coming years.
There's a few challenges. One is cultural. The public and a lot of healthcare providers are still in this mindset that palliative care is end-of-life care, not making the distinction between palliative care and hospice, and not understanding that even hospice can be started earlier and can have benefits for people. There are also financial challenges. In a fee for service model, it's often challenging, but not impossible. We just published a paper on financial models of palliative care and how you can get a clinic off the ground. But how do you pay for social workers and chaplains and the rest of the team? That's necessary to provide whole-person support. On a larger scale, and this is true I think for all countries but a different way, is what are the social determinants of health? What are the social supports available? How can we do our best to provide that? To give an example, we had a randomized control trial of patients and caregivers with Parkinson disease, and we wanted to see the impact of palliative care. Before people were randomized, caregivers in Canada were doing better than caregivers in the United States. It just speaks to the fact that they have better social support for individuals living with serious illness and their families. There's a lot that can't be done and needs to be done for advocacy. This isn't just a medical problem, it's a bigger social problem.
In my practice, I see movement disorders, dementia, ALS, brain cancer, glioblastoma, and those things are not very surprising to anybody who thinks about it. Of things that might be more more cutting edge, one is pediatric neurology. I wrote a paper last year about epilepsy, which I would say is very underexplored, and there's now a group in India that is working on that. But, I think people don't think about epilepsy in part because they're making this link between mortality. And for a lot of people with epilepsy, their lifespan often is shortened, but not in the same way as somebody with ALS. They face a huge amount of challenges, such as social, emotional. For almost any of these things, when you stop to think about it, and particularly for people with pervasive developmental delay and those with epilepsy who have adult caregivers, the palliative care model makes perfect sense, but hasn't really been broadly applied yet. That would that would be an area or space that I think that we definitely could provide more focus to support people.
We have very intentionally and purposefully included people living with neurologic illness and their families on our board. In some ways, it stems from the fact that palliative care is person-centered care, and it's family centered care. We felt from the get-go that we would not be true to our mission if we did not include people living with illnesses and their families as part of our board. Part of our philosophy is that we look to people living with neurologic illness and their families as experts. They are experts who have a lived experience and I can tell you from personal experience, that they make our research better. They make our educational programs better. Hearing the patient or the family voice in education is much more impactful. They help us stay true to our NorthStar to make sure that we're moving forward in the right direction. I would say the grassroots aspect of this really shouldn't be underestimated. In Colorado, when I started my clinic there, the majority of the referrals I was getting, at least early on, were from support groups and from word of mouth more so than from my colleagues. People who have this lived experience get it a lot more intuitively than people who are healthcare providers. Additionally, they have a sense of urgency that health care providers and researchers and other people don't have. That sense of urgency fuels us in our work.
Transcript edited for clarity. Click here for more NeuroVoices.