Examining the Role of Narrative in Palliative Care for Parkinson Disease: Changing the Story.

Esme D Trahair, Sneha Mantri
Author Information
  1. Esme D Trahair: Department of Neurology (EDT, SM); and Trent Center for Bioethics, Humanities, and History of Medicine (EDT, SM), Duke University School of Medicine, Durham, NC.
  2. Sneha Mantri: Department of Neurology (EDT, SM); and Trent Center for Bioethics, Humanities, and History of Medicine (EDT, SM), Duke University School of Medicine, Durham, NC. ORCID

Abstract

Recent years have seen growing interest in neuropalliative care as a subspecialty. Simultaneously, the rise of narrative medicine in patient support groups and clinician training programs offers a way to listen deeply to the stories of those living with chronic illness and may inform corresponding health interventions. This commentary examines the ways in which an understanding of illness narrative schemata, particularly the so-called "chaos narrative," can contribute to patient and care partner distress, which in turn can be alleviated by a palliative care approach. Through examples of stories of people with Parkinson disease and their care partners, the article emphasizes the intersections between narrative medicine, neurology, and palliative care. Specific opportunities for bringing narrative medicine into the clinic are discussed.

References

  1. Neurology. 2018 Jul 31;91(5):217-226 [PMID: 29950434]
  2. J Palliat Med. 2020 Sep;23(9):1155-1156 [PMID: 32877285]
  3. Neurol Clin Pract. 2016 Jun;6(3):209-219 [PMID: 27347438]
  4. Ann Palliat Med. 2020 Feb;9(Suppl 1):S63-S74 [PMID: 32036671]
  5. Am J Hosp Palliat Care. 2023 Mar;40(3):329-336 [PMID: 35848682]
  6. PLoS One. 2021 Mar 19;16(3):e0248968 [PMID: 33740031]
  7. Chronic Illn. 2009 Mar;5(1):46-55 [PMID: 19276225]
  8. NPJ Parkinsons Dis. 2019 Nov 22;5:24 [PMID: 31799376]
  9. Curr Treat Options Neurol. 2018 Feb 21;20(1):2 [PMID: 29464435]
  10. Palliat Med. 2009 Mar;23(2):120-5 [PMID: 19098110]
  11. J Appl Gerontol. 2020 Aug;39(8):834-845 [PMID: 29788783]
  12. Qual Health Res. 2021 Dec;31(14):2585-2601 [PMID: 34629008]
  13. Med Humanit. 2017 Mar;43(1):35-40 [PMID: 27821537]
  14. J Adv Nurs. 2011 Feb;67(2):408-17 [PMID: 20946567]
  15. Children (Basel). 2021 Apr 22;8(5): [PMID: 33922034]
  16. Parkinsonism Relat Disord. 2017 Apr;37:19-26 [PMID: 28108265]
  17. Mov Disord. 2021 Jun;36(6):1325-1329 [PMID: 33786871]
  18. Parkinsonism Relat Disord. 2020 Jan;70:7-12 [PMID: 31785444]
  19. Health (London). 2011 Jan;15(1):38-53 [PMID: 21212113]
  20. Qual Health Res. 2017 Jun;27(7):964-982 [PMID: 28818020]
  21. BMJ Support Palliat Care. 2016 Nov 24;: [PMID: 27884867]

Word Cloud

Created with Highcharts 10.0.0carenarrativemedicinepatientstoriesillnesscanpalliativeParkinsonRecentyearsseengrowinginterestneuropalliativesubspecialtySimultaneouslyrisesupportgroupscliniciantrainingprogramsofferswaylistendeeplylivingchronicmayinformcorrespondinghealthinterventionscommentaryexamineswaysunderstandingschemataparticularlyso-called"chaos"contributepartnerdistressturnalleviatedapproachexamplespeoplediseasepartnersarticleemphasizesintersectionsneurologySpecificopportunitiesbringingclinicdiscussedExaminingRoleNarrativePalliativeCareDisease:ChangingStory

Similar Articles

Cited By