Objective: To demonstrate the feasibility of conducting NM interventions in PD and to describe NM’s potential impact upon ACP.

Background: ACP is associated with increased patient satisfaction, improved quality of life, fewer hospitalizations, and greater use of palliative care and hospice^1-2. The Parkinson’s Foundation and American Academy of Neurology have recognized the importance of ACP as an integral to delivering high-quality PD care by all neurologists. These conversations are particularly vital to have early in the patient’s disease course, but numerous obstacles to achieving this, including both patient and provider discomfort with discussing ACP shortly after diagnosis³. An increasingly recognized avenue of humanistic care is the application of narrative medicine (NM), which harnesses the processes of close reading and writing to grapple with the existential nature of illness, death, and dying. The potential traction of NM in the development of ACP has been directly posited by prior studies⁵.

Method: A total of twelve study participants from the movement disorders clinics at the Oregon Health and Science University and Portland VA Healthcare System will be enrolled in this study. Each participant will undergo two, individual NM sessions with a trained NM facilitator. Each session consists of a close reading exercise, followed by a writing exercise. Before and after completing the NM sessions, study participants will be administered the ACP Engagement Survey (ACPES), a well-established, validated 82-item tool to assess their baseline comfort and readiness to engage in ACP⁴. Participants’ pre-interventional ACPES scores will be compared to their post-interventional ACPES scores.

Results: At this time, eight out of twelve study participants have enrolled in and completed the study, which demonstrates that NM interventions are indeed feasible in our study population. Preliminary analysis of post-interventional ACPES scores have been stable or improved, compared to pre-interventional ACPES scores. Further analysis is pending complete enrollment.

Conclusion: Narrative medicine is an innovative, patient-centered intervention that is feasible to conduct in the PD community. NM may facilitate ACP discussions. Future studies should evaluate its efficacy in a controlled fashion and explicate its mechanism in PD through mixed methods.

References: 1. Brinkman-Stoppelenburg A. The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine 2014.
2. Houben CH. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 2014.
3. Walter HAW, Seeber AA, Willems DL, de Visser M. The Role of Palliative Care in Chronic Progressive Neurological Diseases-A Survey Amongst Neurologists in the Netherlands. Front Neurol. 2019 Jan 14;9:1157. doi: 10.3389/fneur.2018.01157. PMID: 30692960; PMCID: PMC6340288.
4. Howard M, Bonham AJ, Heyland DK, Sudore R, Fassbender K, Robinson CA, McKenzie M, Elston D, You JJ. Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study. BMJ Open. 2016 Jun 23;6(6):e010375. doi: 10.1136/bmjopen-2015-010375. PMID: 27338877; PMCID: PMC4932285.
5. Laskow T, Small L, Wu DS. Narrative Interventions in the Palliative Care Setting: A Scoping Review. J Pain Symptom Manage. 2019 Oct;58(4):696-706. doi: 10.1016/j.jpainsymman.2019.06.009. Epub 2019 Jun 16. PMID: 31216430.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/pilot-study-of-narrative-medicine-nm-interventions-in-facilitating-advance-care-planning-acp-in-parkinsons-disease-pd-a-feasibility-study/