Neuropalliative Care Is Not Just End-of-Life

From the Septmber 2020 issue of Moving Along
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The commonest misperception about palliative care is that it concerns only the end-of-life stages. Even among healthcare professionals, a palliative care referral suggestion is often met with, “but the person isn’t at that stage yet.” The World Health Organization states that palliative care can be appropriate at any stage of illness including the earliest stages of an illness. Indeed, studies demonstrate that early palliative care can be associated with not only improved quality of life, but prolonged survival¹.

Prior to 2007, palliative care for Parkinson disease (PD) was often reported as part of larger cohorts by geriatricians and palliative care physicians. In 2007, the Parkinson Foundation provided a grant to start a palliative care program for PD. This resulted in a cohort demonstrating that those with advanced PD (loosely defined as those with needs beyond the already multidisciplinary Movement Disorder Centre) had symptom burden similar to those with metastatic cancer².

What has been the appeal of palliative care for healthcare teams and ultimately, the patients and families? I believe that palliative care embraces the best of medicine: that is, the desire to improve our patients’ and their families’ lives and not just to complete all the items in our Electronic Health Record or to satisfy government mandates that have been shown to be associated with burnout⁶ . Physicians and other clinicians are willing to spend time to do things that improve patients’ lives.

Our recent study of ambulatory palliative care for PD and related disorders demonstrated that despite high symptom burden, those participating in ambulatory palliative care had improved quality of life⁷ . Participants were diverse (Hoehn and Yahr 2-5). Those in the control group (usual care by their neurologist), experienced worsening quality of life over the 1-year study period. Caregivers had a trend towards reduced burden compared to those in the control group. An examination of caregiver burden revealed that both caregiver (caregiver depression or anxiety and caregiver perception of patient quality of life) and patient characteristics (more spiritual distress and lower health-related quality of life) were associated with higher caregiver burden. Among our patients participating in the trial, those that identified a caregiver willing to participate in research were more likely to be male and from a higher socioeconomic strata. Further, despite having higher scores on the motor UPDRS and lower MOCA scores, individuals with identified caregivers willing to participate in research had higher quality of life and reported fewer nonmotor symptoms. This speaks to the importance of caregivers to our patients. When caregivers do well, our patients do better. And the corollary is true: when a patient does not have a caregiver, it may be challenging to maximize quality of life outcomes for this patient. Of note, women and those with lower socioeconomic status and thus, less ability to mitigate the absence of a caregiver, were most likely to report not having someone to support their health. The palliative care philosophy of including families as our unit of care with the patient can maximize benefits to quality of life for both and provide the needed support to remain integral to our patients’ lives throughout the course of their illness.

Neuropalliative care acceptance among physicians continues to have a spectrum from those who embrace its philosophy from diagnosis to those who feel that it is only appropriate for the imminently dying. The research in 2020 demonstrates that Neuropalliative Care has significant positive impact on patients and families. The demand for Neuropalliative Care is likely to be a grassroots patient and family issue that hopefully will define excellent care delivery for movement disorders across the globe.

References

1. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742.
2. Miyasaki JM, Long J, Mancini D, Moro E, Fox SH, Lang AE, Marras C, Chen R, Strafella R, Arshinoff R, Ghoche R, Hui J. Palliative care for advanced Parkinson disease: An interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism Rel Dis 2012; 18:S6-9.
3. Tarolli CG, Chesire AM, Biglan KM. Palliative care in Huntington disease: Personal reflections and a review of the literature. Tremor Other Hyperkinet Mov 2017;454
4.  Bukki J, Nubling G, Lorenzl S. Managing advanced progressive supranuclear palsy and Corticobasal degeneration in a palliative care unit: Admission Triggers and outcomes. A J Hosp Palliat Care 2016;477-482.
5. Wiblin L, Lee M. Burn D. Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy. Parkinsonism Relat Disord 2017;7-14.
6.  Miyasaki JM, Rheaume C, Gulya L, Ellenstein A, Schwarz HB, Vidic TR, Shanafelt D, Cascino TL, Keran CM, Busis NA. Qualitative study of burnout, career satisfaction, and well-being among US neurologists in 2016. Neurology 2017;89:1730-1738.
7. Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, Khan R, Friedman C, Cernik W, Goto Y et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA Neurol 2020;77:551-560.