Semin Neurol
DOI: 10.1055/s-0044-1787807
Review Article

Pathways to Neuropalliative Care Practice

Eileen Harrigan
1   Department of Neurology, NYU Grossman School of Medicine, New York, New York
,
Hannah L. Kirsch
2   Department of Neurology and Neurological Sciences, Stanford University School of Medicine, Stanford, California
,
Kwame Adjepong
3   Department of Neurology, University of California, San Francisco Weill Institute for Neurosciences, San Francisco, California
,
Rita Caroline Crooms
4   Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York
5   Brookdale Department of Geriatrics and Palliative Care, Icahn School of Medicine at Mount Sinai, New York, New York
› Author Affiliations

Abstract

As neuropalliative care is better recognized and more widely utilized, there is as great a need for clinicians trained in the field as there is for disease-specific symptom management, advance care planning, and end-of-life care. In this manuscript, we describe potential career trajectories in neuropalliative care. For clinicians, this includes educational and training opportunities within primary neuropalliative care (integrating palliative care principles into usual neurology practice), specialty neuropalliative care (completing a hospice and palliative medicine fellowship), and hospice. We also describe considerations for establishing new clinical neuropalliative practices and highlight neuropalliative education and research as key areas for advancing the field.



Publication History

Article published online:
02 July 2024

© 2024. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 
  • References

  • 1 Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology 2014; 83 (06) 561-567
  • 2 Palliative care in neurology. The American Academy of Neurology Ethics and Humanities Subcommittee. Neurology 1996; 46 (03) 870-872
  • 3 Taylor LP, Besbris JM, Graf WD, Rubin MA, Cruz-Flores S, Epstein LG. Ethics, Law, and Humanities Committee, a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society. Clinical guidance in neuropalliative care: an AAN position statement. Neurology 2022; 98 (10) 409-416
  • 4 Accreditation Council for Graduate Medical Education. ACGME Program Requirements for Graduate Medical Education in Neurology. 2022. Updated July 1, 2023. https://www.acgme.org/globalassets/pfassets/programrequirements/180_neurology_2023.pdf. Accessed January 1, 2024
  • 5 Quill TE, Abernethy AP. Generalist plus specialist palliative care–creating a more sustainable model. N Engl J Med 2013; 368 (13) 1173-1175
  • 6 Ferrell BR, Twaddle ML, Melnick A, Meier DE. National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition. J Palliat Med 2018; 21 (12) 1684-1689
  • 7 Hannon P, Kirsch HL, Hack N. et al. Neuropalliative Care Curriculum for Neurology Residents. In: American Academy of Neurology Graduate Education Subcommittee. February 2023. Accessed January 1, 2024 at: https://www.aan.com/siteassets/home-page/tools-and-resources/academic-neurologist--researchers/aan-core-curricula/neuropalliative-care-curriculum-final.pdf
  • 8 Naasan G, Boyd ND, Harrison KL. et al. Advance directive and POLST documentation in decedents with dementia at a memory care center: the importance of early advance care planning. Neurol Clin Pract 2022; 12 (01) 14-21
  • 9 Sutter R, Meyer-Zehnder B, Baumann SM, Marsch S, Pargger H. Advance directives in the neurocritically ill: a systematic review. Crit Care Med 2020; 48 (08) 1188-1195
  • 10 Poveda-Moral S, Falcó-Pegueroles A, Ballesteros-Silva MP, Bosch-Alcaraz A. Barriers to advance care planning implementation in health care: an umbrella review with implications for evidence-based practice. Worldviews Evid Based Nurs 2021; 18 (05) 254-263
  • 11 Caring Conversations. In: Bioethics CfP ed; 2021. Accessed January 1, 2024 at: https://www.practicalbioethics.org/featured-resources/caring-conversations/
  • 12 Prepare for Your Care. In: Prepare for Your Care; 2021. Accessed January 1, 2024 at: https://prepareforyourcare.org/en/welcome
  • 13 What Matters Conversations. In: EOLC Partners Think Tank; 2021. Accessed January 1, 2024 at: https://www.whatmattersconversations.org/.
  • 14 Five Wishes. In: Five Wishes; Aging with Dignity. 2024. Accessed January 1, 2024 at: https://www.fivewishes.org/.
  • 15 Kreitzer N, Murtaugh B, Creutzfeldt C. et al. Prognostic humility and ethical dilemmas after severe brain injury: Summary, recommendations, and qualitative analysis of Curing Coma Campaign virtual event proceedings. Front Hum Neurosci 2023; 17: 1128656
  • 16 Jaffa MN, Kirsch HL, Creutzfeldt CJ. et al; Curing Coma Campaign Collaborators. Common data elements for disorders of consciousness: recommendations from the working group on goals-of-care and family/surrogate decision-maker data. Neurocrit Care 2023; 39 (03) 600-610
  • 17 Kramer NM, Besbris J, Hudoba C. Education in neuropalliative care. Handb Clin Neurol 2023; 191: 259-272
  • 18 Fleming V, Prasad A, Ge C. et al. Prevalence and predictors of shared decision-making in goals-of-care clinician-family meetings for critically ill neurologic patients: a multi-center mixed-methods study. Crit Care 2023; 27 (01) 403
  • 19 Muehlschlegel S, Goostrey K, Flahive J, Zhang Q, Pach JJ, Hwang DY. Pilot randomized clinical trial of a goals-of-care decision aid for surrogates of patients with severe acute brain injury. Neurology 2022; 99 (14) e1446-e1455
  • 20 Plinke WV, Buchbinder SA, Brumback LC. et al. Identification of palliative care needs and mental health outcomes among family members of patients with severe acute brain injury. JAMA Netw Open 2023; 6 (04) e239949
  • 21 McConvey K, Kazazian K, Iansavichene AE, Jenkins ME, Gofton TE. Triggers for referral to specialized palliative care in advanced neurologic and neurosurgical conditions: a systematic review. Neurol Clin Pract 2022; 12 (03) 190-202
  • 22 Lupu D, Quigley L, Mehfoud N, Salsberg ES. The growing demand for hospice and palliative medicine physicians: will the supply keep up?. J Pain Symptom Manage 2018; 55 (04) 1216-1223
  • 23 Periyakoil VS, von Gunten CF, Bailey FA, Dingfield LE, Schlögl M. Mid-career training to advance palliative care. J Palliat Med 2022; 25 (05) 705-711
  • 24 NHPCO Facts and Figures. In: National Hospice and Palliative Care Organization. December 23, 2023. Accessed January 1, 2024 at: https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2023.pdf
  • 25 Volicer L. Management of severe Alzheimer's disease and end-of-life issues. Clin Geriatr Med 2001; 17 (02) 377-391
  • 26 Klager J, Duckett A, Sandler S, Moskowitz C. Huntington's disease: a caring approach to the end of life. Care Manag J 2008; 9 (02) 75-81
  • 27 Armstrong MJ, Alliance S, Corsentino P, Maixner SM, Paulson HL, Taylor A. Caregiver-reported barriers to quality end-of-life care in dementia with Lewy bodies: a qualitative analysis. Am J Hosp Palliat Care 2020; 37 (09) 728-737
  • 28 Daly FN, Ramanathan U. End-of-life and hospice care for neurologic illness. Handb Clin Neurol 2022; 190: 195-215
  • 29 Yap R, Akhileswaran R, Heng CP, Tan A, Hui D. Comfort care kit: use of nonoral and nonparenteral rescue medications at home for terminally ill patients with swallowing difficulty. J Palliat Med 2014; 17 (05) 575-578
  • 30 Byock I. Core roles and responsibilities of physicians in hospice care: a statement by and for U.S. hospice and palliative care physicians. J Palliat Med 2023; 26 (05) 613-621
  • 31 Finlay E, Rabow MW, Buss MK. Filling the gap: creating an outpatient palliative care program in your institution. Am Soc Clin Oncol Educ Book 2018; 38: 111-121
  • 32 Elliot VL, Morgan D, Kosteniuk J, Froehlich Chow A, Bayly M. Health-related stigma of noncommunicable neurological disease in rural adult populations: a scoping review. Health Soc Care Community 2019; 27 (04) e158-e188
  • 33 Gofton TE, Chum M, Schulz V, Gofton BT, Sarpal A, Watling C. Challenges facing palliative neurology practice: a qualitative analysis. J Neurol Sci 2018; 385: 225-231
  • 34 Saadi A, Himmelstein DU, Woolhandler S, Mejia NI. Racial disparities in neurologic health care access and utilization in the United States. Neurology 2017; 88 (24) 2268-2275
  • 35 Johnson KS. Racial and ethnic disparities in palliative care. J Palliat Med 2013; 16 (11) 1329-1334
  • 36 Marulanda-Londoño ET, Bell MW, Hope OA. et al. Reducing neurodisparity: recommendations of the 2017 AAN Diversity Leadership Program. Neurology 2019; 92 (06) 274-280
  • 37 Kluger BM, Miyasaki J, Katz M. et al. Comparison of integrated outpatient palliative care with standard care in patients with parkinson disease and related disorders: a randomized clinical trial. JAMA Neurol 2020; 77 (05) 551-560
  • 38 Calton B, Rabow M, Page M. et al. Embedding palliative care in a neuro-oncology clinic at an academic medical center: our structure, experience, and lessons learned. Neurooncol Adv 2022; 4 (01) vdac114
  • 39 Hui D, Bruera E. Models of palliative care delivery for patients with cancer. J Clin Oncol 2020; 38 (09) 852-865
  • 40 Designing an Office or Clinic Palliative Care Program. In: Center to Advance Palliative Care. Accessed January 1, 2024 at: https://www.capc.org/toolkits/designing-an-office-or-clinic-palliative-care-program/
  • 41 Mehta AK, Najjar S, May N, Shah B, Blackhall L. A needs assessment of palliative care education among the united states adult neurology residency programs. J Palliat Med 2018; 21 (10) 1448-1457
  • 42 Goyal T, Hasty BN, Bereknyei Merrell S, Gold CA. Education research: understanding barriers to goals of care communication for neurology trainees. Neurology 2019; 93 (08) 362-366
  • 43 Gleicher ST, Hurd CJ, Weisner PA. et al Curriculum innovations: implementing a neuropalliative care curriculum for neurology residents. Neurology Education 2019; 01 (02) e20002
  • 44 Baker JN. Palliative Neurology. In: Practical Neurology. July/August 2020. Accessed January 1, 2024 at: https://practicalneurology.com/articles/2020-july-aug/palliative-neurology
  • 45 ACGME Program Requirements for Graduate Medical Education in Internal Medicine. In: Accreditation Council for Graduate Medical Education. Accessed January 1, 2024 at: https://www.acgme.org/globalassets/pfassets/programrequirements/140_internalmedicine_2023.pdf
  • 46 ACGME Program Requirements for Graduate Medical Education in Geriatric Medicine. In: Accreditation Council for Graduate Medical Education. Accessed January 1, 2024 at: https://www.acgme.org/globalassets/pfassets/programrequirements/125_geriatricmedicine_2023.pdf
  • 47 International Neuropalliative Care Certificate Course. In: International Neuropalliative Care Society. Accessed January 1, 2024 at: https://www.inpcs.org/i4a/pages/index.cfm?pageid=3363
  • 48 Kluger BM, Kramer NM, Katz M. et al. Development and dissemination of a neurology palliative care curriculum: education in palliative and end-of-life care neurology. Neurol Clin Pract 2022; 12 (02) 176-182
  • 49 Creutzfeldt CJ, Kluger B, Kelly AG. et al. Neuropalliative care: priorities to move the field forward. Neurology 2018; 91 (05) 217-226
  • 50 Gursahani R, Lorenzl S. International models of neuropalliative care. Handb Clin Neurol 2022; 190: 73-84
  • 51 Abdul-Rahman T, Badar SM, Ali MA, Kundu M, Ademeta E, Awuah WA. The current state of neuropalliative care in developing countries. Where are we now?. Postgrad Med J 2023; 99 (1174) 805-807
  • 52 Konkel L. Racial and ethnic disparities in research studies: the challenge of creating more diverse cohorts. Environ Health Perspect 2015; 123 (12) A297-A302
  • 53 Brown E, Morrison RS, Gelfman LP. An update: NIH research funding for palliative medicine, 2011-2015. J Palliat Med 2018; 21 (02) 182-187
  • 54 Collaborators GBDN. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019; 18 (05) 459-480
  • 55 EPEC for Neurology. In: Northwestern University. Accessed January 1, 2024 at: https://www.bioethics.northwestern.edu/programs/epec/curricula/neurology-modules.html
  • 56 VitalTalk. In: VitalTalk. Accessed January 1, 2024 at: www.vitaltalk.org
  • 57 Fast Facts. In: Palliative Care Network of Wisconsin. Accessed January 1, 2024 at: https://www.mypcnow.org/fast-facts/
  • 58 Fast Facts Core Curriculum Neurology. In: Palliative Care Network of Wisconsin. Accessed January 1, 2024 at: https://www.mypcnow.org/wp-content/uploads/2019/03/Core-Specialty-Neurology.pdf
  • 59 Tools and Training for Clinicians. In: Center to Advance Palliative Care. Accessed January 1, 2024 at: www.capc.org
  • 60 Serious Illness Conversation Guide. In: Ariadne Labs: A joint center for health systems innovation and Dana-Farber Cancer institute; 2015. Accessed January 1, 2024 at: https://www.ariadnelabs.org/resources/downloads/serious-illness-conversation-guide/ 2015
  • 61 Smith A, Widera E. GeriPal Podcast: A Geriatrics and Palliative Care Podcast for Every Healthcare Professional. Accessed January 1, 2024 at: https://geripal.org/geripal-podcast/
  • 62 End Well. In: End Well; 2023. Accessed January 1, 2024 at: https://endwellproject.org/