Neurological disease, from Alzheimer's disease to stroke and epilepsy, can impact a person's life in many ways. It can alter their ability to speak, move, think or lead an independent life. And it can have a significant impact on their families and loved ones, too.
An emerging field, termed "neuropalliative care," has taken shape over the past few years to help provide impactful, holistic care for patients with serious neurological disease. And now, experts in the field are seeking ways to improve the overall wellbeing of their patients and loved ones through the power of research.
A special communication in JAMA Neurology, first-authored by Winnie K. Lau, MD, a neurocritical care physician and associate professor of neurology and senior-authored by David Y. Hwang, MD, professor of neurology and division chief of neurocritical care, describes needed research that can help advance patient care, including:
- identification and measurements of key symptoms and outcomes,
- studying effective care delivery and implementation,
- and improving communication about prognosis.
"Neurological disorders are among the leading causes of overall death and disability in the world," said Hwang. "Research suggests that palliative care-related needs and quality of life needs for neurology patients are comparable to those of some other serious diseases, like cancer, where palliative care has traditionally been more integrated."
Despite the growing need, relatively sparse research has been done to evaluate and improve palliative care in patients with neurological disease. To draw attention to this critical gap in knowledge, Lau and Hwang met with other members of the International Neuropalliative Care Society (INPCS) Research Committee-comprised of clinicians, researchers, therapists, social workers, people with neurological disease, and their care givers-to help identify new research priorities.
Winnie K. Lau, MD
"When we move forward with medical research, we should really be looking at the symptoms and the things that matter the most to the patients and their family members," said Lau, who also studies stroke and family communications in the ICU.
"And when we think about delivering that care, we need to think about it in the context of the spaces that they live in and the limitations that we should be working around."
Neurological diseases can affect communication or cognition, making it challenging for patients to effectively communicate with their care team about their health. In cases of severe or progressive neurological disease, patients may need to rely on family members and care partners, termed proxies, to communicate their needs or wishes with their care team.
Lau and colleagues write that more technological tools, such as eye tracking communication devices and sleep trackers, could potentially assist with patient self-reporting and autonomy. In a similar vein, the field should focus on figuring out new ways to carry out goal-concordant care, or care that aligns with the values of the patient, when patients themselves are unable to communicate those goals.
Neuropalliative care is provided everywhere, including acute inpatient settings, nursing facilities, clinics, or even at home. Just like any other kind of medical care, practitioners in the neuropalliative field need to adapt their medical interventions to fit the setting using available resources. Lau and colleagues challenge other practitioners to take interventions proven to be efficacious and find ways to incorporate and adapt them into different setting where neuropalliative care needs exist.
David Y. Hwang, MD
Quality-of-life (QOL) is typically associated with social life, physical health, and general mental health. However, loss of identity, spiritual distress, financial burden, and stigma can also have significant impacts on patients and their care partners. Lau and colleagues write that future research on should focus on more holistic QOL factors, in addition to more traditional quality-of-life factors like pain, anxiety, role limitations, etc.
Addressing Funding Gaps in Neurology
In addition to outlining research needs, Lau and Hwang challenge funding agencies to consider initiatives that are more focused on supportive care needs, in addition to "cures."
Although cures are incredibly important, many patients with neurological disorders benefit from palliative care throughout their lifetimes, even while pursuing curative treatments.
"We did make a case that that more attention from traditional funding agencies for this type of research would be helpful," said Hwang. "There are a lot of funding gaps within the medical field, and even within neurology. I think it was important for us to not only highlight what the consensus in terms of where research would be needed, but also make the case of what would need to be in place for that actually to happen."
