People living with a neurological illness often face a long and painful road.
Many neurological illnesses, such as dementia, Parkinson’s and Huntington’s, are progressive illnesses that come with a number of additional symptoms, from pain to depression.
In recent years, more neurologists are realizing the need for specialized palliative care for this population. Three years ago, a dedicated group of neuropalliative specialists came together to form the International Neuropalliative Care Society with the goal of fostering growth in the field and creating guidelines for those who wish to practice.
A budding specialty
Guidelines for palliative medicine of any kind are relatively recent, Dr. Farrah Daly, owner and founder of Evenbeam Neuropalliative Care, LLC, told Palliative Care News. The American Board of Medical Specialties and American Osteopathic Association Board of Specialties didn’t recognize hospice and palliative care as a subspecialty until 2006.
“There were people out there doing the work and trying to spread the word, but publications were not particularly interested,” in the specialty, Daly said.
For her personal history, Daly said she discovered neuropalliative care while still in residency.
“I felt like I was leaving the field of neurology to pursue more training in palliative care,” Daly said. “The educators were not familiar with palliative care as a subspecialty for neurology. They didn’t know who to connect me to, and they supported me as best they could, but it really felt like I was going off on my own.”
Daly was a part of the second-ever class to sit the palliative care certification exam in 2010.
Things have changed in the decade following Daly’s certification. As palliative care has grown in recognition, so too have opportunities for providers looking to practice the specialty.
“I think that every neurologist needs to be equipped with palliative care skills,” Dr. Claire J. Creutzfeldt, Department of Neurology, Harborview Medical Center, told Palliative Care News. “That includes advanced communication skills, addressing nonphysical symptoms, care partners and caregiver burden.”
‘The future of health care is teamwork’
Creutzfeldt’s team at Harborview Medical Center has been conducting communication workshops to help equip neurologists with the skills mentioned above.
“Most of them want to have these skills,” she said.
Creutzfeldt added that it makes sense for a neurology practice to have embedded social workers and other palliative care specialists to ensure the best care for their patients.
“The future of medicine is teamwork,” Creutzfeldt explained.
Like other chronic illnesses, those diagnosed with neurological illness benefit from palliative care that starts closer to the time of diagnosis.
“Anyone who experiences a life-altering event should receive palliative care,” Creutzfeldt said. “I would argue most neurological diagnoses are life-altering, so whether you see a specialist from the beginning or whether your needs can be met by your primary care team depends on the diagnosis and should be individually adapted.”
Neurological illnesses come with a lot of prognostic uncertainty, Creutzfeldt said, which can lead to patients and their care partners suffering.
“Personhood is particularly threatened with neurological illness,” Creutzfeldt explained. “Cancer is something attacking you that you can fight. But a neurological illness can make you clumsy or forgetful or sad. It just requires a different approach.”
Neuropalliative care can help restore some dignity to patients living with these illnesses, Daly explained, but there’s a deep need for the specialized nature of neuropalliative care to make that happen.
“People who are having more difficulty from their illness or who are nearing the end of their life, they deserve elegant, expert care all the way through,” Daly said. “For people living with neurologic illness, adding a real depth of experience of neurologic care can make their care more elegant and precise as they approach the end of life.”
Starting specialized palliative care for a neurologic illness sooner also helps with medication management, Daly explained. Parkinson’s patients, for example, react poorly to dopamine blockers, such as haloperidol. This class of drug is often used in end-of-life care with great success, Daly said, but can be harmful to patients with Parkinson’s.
Neuropalliative care can be provided in almost any setting, from hospital to home. Daly’s practice, Evenbeam, provides care exclusively in a patient’s home or senior living facility. Daly said she wasn’t aware of other neuropalliative care practices structured this way, though there are neurologists who work within hospice organizations.
Creutzfeldt, who specializes in stroke aftercare, provides most of her care in the hospital, but said patients should be able to transition to a care setting where they feel most comfortable.
The road ahead
For the future of the profession, Creutzfeldt envisions more neurologists who are competent in the principals of neuropalliative care as part of interdisciplinary teams that are able to take on more complex cases.
“There’s still a huge need for research — both quantitative and qualitative — for us to better understand these unique needs of patients and families, so that we can develop and implement interventions that effectively improve both patient- and family-centered outcomes,” Creutzfeldt explained.
Daly said she sees a future where new neurologists graduate with a basic understanding of palliative care principles.
“They will recognize the value of anticipatory guidance for counseling people living with illness and their families about the future, the future of their illness, and how they can best utilize their time,” Daly explained.