What the New England Journal of Medicine Got Wrong About Parkinson’s Disease

March 27, 2026 < 5 minute read

At the end of July 2024 the New England Journal of Medicine, one of the top medical journals in the world, published one of their definitive reviews on Parkinson’s disease. Within a few days I wrote the following letter to the editor.

TO THE EDITOR: I appreciated Drs. Tanner and Ostrem’s review of Parkinson’s disease (PD) which provided an outstanding overview of the epidemiology, diagnosis, motor and nonmotor symptoms, and medical and surgical treatments of this common and disabling condition. Although brief mention was made of increased mortality and dementia risk, it should be clarified that PD is the 10th leading cause of death in older adults in the US and that 75% develop dementia over their illness.1,2 More importantly, no space was dedicated to acknowledging that palliative care needs contribute to quality of life at levels comparable to persons with metastatic cancer;3 nor that recent research and national guidelines support the integration of palliative care approaches throughout the disease course to optimize  patients’ and carers’ quality of life.4 It is important that physicians and other members of the interprofessional team understand that the disease-focused care outlined in this review must be complemented by attending to palliative domains of PD care—including caregiver support, advance care planning, psychosocial/spiritual distress, end-of-life care—to fully address the suffering of patients and family.5

This letter was rejected by the journal editor claiming they didn’t have space. I doubt they would allow a review on another leading cause of death, such as cancer or heart disease, to omit such critical details. This review and the rejection of my letter have got me thinking about neurologists’ narratives about Parkinson’s. Although culture is changing, many neurologists still think of Parkinson’s as a benign illness, underestimate the impact of getting this diagnosis,6 and tell their patients (wrongly) that people don’t die from Parkinson’s. I will be working on a longer piece about this narrative and how to change it but wanted to get something out there to set the record straight in the meantime.

References

1.             Curtin SC, Tejada-Vera B, Bastian BA. Deaths: Leading Causes for 2021. National Vital Statistics Reports 2024;73(4):1-116.

2.             Hely MA, Reid WG, Adena MA, Halliday GM, Morris JG. The Sydney multicenter study of Parkinson's disease: the inevitability of dementia at 20 years. Mov Disord 2008;23(6):837-44. DOI: 10.1002/mds.21956.

3.             Kluger BM, Shattuck J, Berk J, et al. Defining Palliative Care Needs in Parkinson's Disease. Mov Disord Clin Pract 2019;6(2):125-131. DOI: 10.1002/mdc3.12702.

4.             Kluger BM, Hudson P, Hanson LC, et al. Palliative care to support the needs of adults with neurological disease. Lancet Neurol 2023;22(7):619-631. DOI: 10.1016/S1474-4422(23)00129-1.

5.             National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018.

6.             Phillips LJ. Dropping the bomb: the experience of being diagnosed with Parkinson's disease. Geriatr Nurs 2006;27(6):362-9. DOI: 10.1016/j.gerinurse.2006.10.012.

Photo Credit: Andrea Piacquadio