Literature DB >> 33246892

Would people living with epilepsy benefit from palliative care?

Benzi M Kluger1, Cornelia Drees2, Thomas R Wodushek2, Lauren Frey2, Laura Strom2, Mesha-Gay Brown2, Jacquelyn L Bainbridge3, Sarah N Fischer3, Archana Shrestha2, Mark Spitz2.   

Abstract

Palliative care (PC) is an approach to the care of persons living with serious illness and their families that focuses on improving quality of life and reducing suffering by addressing complex medical symptoms, psychosocial needs, spiritual well-being, and advance care planning. While PC has traditionally been associated with hospice care for persons with cancer, there is now recognition that PC is relevant to many noncancer diagnoses, including neurologic illness, and at multiple points along the illness journey, not just end of life. Despite the recent growth of the field of neuropalliative care there has been scant attention paid to the relevance of PC principles in epilepsy or the potential for PC approaches to improve outcomes for persons living with epilepsy and their families. We believe this has been a significant oversight and that PC may provide a useful framework for addressing the many sources of suffering facing persons living with epilepsy, for engaging patients and families in challenging conversations, and to focus efforts to improve models of care for this population. In this manuscript we review areas of significant unmet needs where a PC approach may improve patient and family-centered outcomes, including complex symptom management, goals of care, advance care planning, psychosocial support for patient and family and spiritual well-being. When relevant we highlight areas where epilepsy patients may have unique PC needs compared to other patient populations and conclude with suggestions for future research, clinical, and educational efforts.
Copyright © 2020 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Advance care planning; Caregiver; Epilepsy; Neuropalliative care; Psychosocial support; Symptom management

Mesh:

Year:  2020        PMID: 33246892      PMCID: PMC9326903          DOI: 10.1016/j.yebeh.2020.107618

Source DB:  PubMed          Journal:  Epilepsy Behav        ISSN: 1525-5050            Impact factor:   3.337


  155 in total

Review 1.  Neuropalliative care: Priorities to move the field forward.

Authors:  Claire J Creutzfeldt; Benzi Kluger; Adam G Kelly; Monica Lemmon; David Y Hwang; Nicholas B Galifianakis; Alan Carver; Maya Katz; J Randall Curtis; Robert G Holloway
Journal:  Neurology       Date:  2018-06-27       Impact factor: 9.910

2.  Burnout, career satisfaction, and well-being among US neurologists in 2016.

Authors:  Neil A Busis; Tait D Shanafelt; Christopher M Keran; Kerry H Levin; Heidi B Schwarz; Jennifer R Molano; Thomas R Vidic; Joseph S Kass; Janis M Miyasaki; Jeff A Sloan; Terrence L Cascino
Journal:  Neurology       Date:  2017-01-25       Impact factor: 9.910

3.  The inner life of physicians and care of the seriously ill.

Authors:  D E Meier; A L Back; R S Morrison
Journal:  JAMA       Date:  2001-12-19       Impact factor: 56.272

4.  Effect of providing sudden unexpected death in epilepsy (SUDEP) information to persons with epilepsy (PWE) and their caregivers-Experience from a tertiary care hospital.

Authors:  Divya M Radhakrishnan; Bhargavi Ramanujam; Padma Srivastava; Deepa Dash; Manjari Tripathi
Journal:  Acta Neurol Scand       Date:  2018-07-09       Impact factor: 3.209

5.  Epilepsy from the Patient's Perspective: Review of Results of a Community-Based Survey.

Authors:  Robert S. Fisher
Journal:  Epilepsy Behav       Date:  2000-08       Impact factor: 2.937

Review 6.  The global burden and stigma of epilepsy.

Authors:  Hanneke M de Boer; Marco Mula; Josemir W Sander
Journal:  Epilepsy Behav       Date:  2008-02-14       Impact factor: 2.937

7.  Impact of a geriatric nursing home palliative care service on unnecessary medication prescribing.

Authors:  Erin M Suhrie; Joseph T Hanlon; Emily J Jaffe; Mary Ann Sevick; Christine M Ruby; Sherrie L Aspinall
Journal:  Am J Geriatr Pharmacother       Date:  2009-02

8.  Health locus of control in patients with epilepsy and its relationship to anxiety, depression, and seizure control.

Authors:  Ali A Asadi-Pooya; Courtney A Schilling; David Glosser; Joseph I Tracy; Michael R Sperling
Journal:  Epilepsy Behav       Date:  2007-09-29       Impact factor: 2.937

9.  Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

Authors:  Sarah R Jordan; Benzi Kluger; Roman Ayele; Adreanne Brungardt; Anne Hall; Jacqueline Jones; Maya Katz; Janis M Miyasaki; Hillary D Lum
Journal:  Ann Palliat Med       Date:  2020-02-06

10.  Epilepsy surgery: factors that affect patient decision-making in choosing or deferring a procedure.

Authors:  Christopher Todd Anderson; Eva Noble; Ram Mani; Kathy Lawler; John R Pollard
Journal:  Epilepsy Res Treat       Date:  2013-09-16
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