Neuropalliative Care – It’s Not Just Hospice!

History of palliative care

The modern movement for palliative care began in the mid-twentieth-century, with an effort to improve care for the dying. Clinicians and researchers began to realize that, in many cases, fighting diseases such as cancer till the very end was actually worsening patients’ experiences of their finals months, and of the dying process itself. Stimulated by the work of psychiatrist Elisabeth Kübler-Ross, among others, medical communities started to rethink end-of-life care. They began to wonder what would happen if, instead of reducing the medical view to the doctor and patient only, they broadened it to include the patient’s family, as well as other individuals who could bring new perspectives on medical, social, and spiritual care.

This early history helps explain why palliative care is often lumped together with hospice. Because the first conditions to which the palliative model was applied—cancer, and later heart failure—came with high-fatality prognoses, it was natural to think of palliative care as a synonym for hospice care.

From hospice to all-stages palliation

In the ensuing decades, however, a few doctors who treat other, less life-threatening diseases started to ask if the palliative model might be a better model of care, regardless of the patient’s proximity to end-of-life. Looking at some of the principles of palliative care—seeing the whole person rather than just the disease, seeking information about the patient’s priorities and goals, working to improve quality of life rather than just minimize symptoms, and including the patient’s familial and spiritual concerns—sounded to some people like pretty good ideas for any stage of care.

Thus was born the concept of “neuropalliative care,” which is palliative care for neurological diseases and disorders, including Parkinson’s disease. Neuropalliative care is a subspecialty accredited by both the American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education. Although there are only about 50 palliative-care-accredited neurologists in the U.S. at the moment, interest in the subspecialty is growing amongst current medical students and interns.

In Colorado, where I live, the University of Colorado Movement Disorders Center has started a Neurology Supportive and Palliative Care Clinic. A patient’s first visit to the clinic usually lasts about two hours. It includes a consultation with a neurologist, of course, but also involves meeting with a nurse, a social worker, and a chaplain—all of whom will continue to be part of the care team. The clinic is undertaking a research study to determine the effectiveness of its care model. (If you are curious to hear more, you can listen to a 30-minute radio interview with Dr. Benzi Kluger, founder of the clinic.)

While many people have the idea that palliative care means “giving up” on treating the disease, quite the opposite is true. The involvement of multiple people on the palliative care team can help cover gaps in care that often go unnoticed and unaddressed. For instance, a PWP might be getting treated for motor symptoms with appropriate pharmaceuticals and exercise, but what about common non-motor symptoms such as chronic pain and fatigue, common psychological symptoms such as depression, and common emotional or spiritual issues such as fear of death and fear of burdening one’s family? The ability to notice and address these gaps in care suggests that palliative care may in fact be a more effective means of care than we have in the current model.

Summary points about palliative care for PD

• It can be started at any stage of the disease—including diagnosis (often a stressful and high-needs time for both patient and family)
• It encompasses the caregivers and family, not just the patient
• It involves a care-team instead of just one or two physicians
• It focuses on the patient’s and family’s priorities and goals, including but not limited to symptom management
• It might include hospice as its last stage, but is much broader than end-of-life care by itself