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February 10, 2020

Palliative Programs for Persons With Parkinsonism—The Next Frontier

Author Affiliations
  • 1Center of Expertise for Parkinson & Movement Disorders, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Radboud University Medical Center, Nijmegen, the Netherlands
  • 2Scientific Center for Quality of Healthcare (IQ Healthcare), Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands
JAMA Neurol. 2020;77(5):548-550. doi:10.1001/jamaneurol.2019.4697

The challenges facing people with Parkinson disease (PD) become increasingly complex as the disease advances. Despite optimal medical treatment, many individuals experience mounting unmet needs, including problems with mobility and cognition.1,2 This situation occurs perhaps because most management approaches revolve around disease-based models, which tend to disregard the person and family living with the disease. It is therefore worthwhile to consider alternative approaches. One option is palliative care, which is a holistic way of looking at a person and family in the context of a serious illness. The World Health Organization definition described palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”3 Because of this association with life-threatening illnesses, most clinicians—when asked about palliative care—will predominantly consider terminally ill patients with cancer and end-of-life issues occurring in hospices. There is, of course, ample positive experience with such palliation in the setting of terminal diseases like cancer, but there is growing awareness that palliative care may also benefit persons with neurodegenerative diseases like PD.4,5 Yet, in current practice, palliative care is either not introduced at all to persons with PD, or it is introduced very late, in the final disease stages before death.6 This reluctance to consider palliative care likely exists because PD is generally not conceptualized as a terminal illness because of its slowly progressive nature and typically long survival. However, another explanation relates to scientific underpinning; we do not fully understand which components of palliation are useful for persons with PD,7,8 in which disease phase these palliations should be applied, and how to implement palliative care for this population.9,10

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