Review Article WHAT IS NEUROPALLIATIVE CARE: Making it work in India: WHAT IS NEUROPALLIATIVE CARE: Making it work in India

Dr. Roop Gursahani

doi:10.15713/ins.bhj.81

Authors

Dr. Roop Gursahani MD, DM, FAAN Consultant Neurologist & Epileptologist, P.D.Hinduja National Hospital

DOI:

https://doi.org/10.15713/ins.bhj.81

Abstract

The burden of neurologic disease is substantial and rising worldwide. India is no exception. These illnesses cause prolonged disability and distress for the patient, family and community. Palliative care (PC) is an approach that focuses on providing relief from suffering. Till about two decades ago, PC was largely restricted to oncology but there is now a growing community of healthcare providers and others, working to incorporate the same principles in the care of our patients, through the International Neuropalliative Care Society (INPCS). This paper outlines the evolution of this new subspecialty and the knowledge and skill sets required to practice it. Education and research priorities are important and are also discussed.

References

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 May;18(5):459-480

Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014 Aug 5;83(6):561-7

Dame Cicely Saunders Biography: https://cicelysaundersinternational.org/dame-cicely-saunders/

Saunders C. The evolution of palliative care. J R Soc Med. 2001;94(9):430-432

Lien Foundation (2010). The Quality of Death: Ranking End-of-Life Care across the world. Economist Intelligence Unit, The Economist, London UK, 2010. Accessed Sept 24, 2021.

<http://www.lienfoundation.org/sites/default/files/qod_index_2.pdf>

Lien Foundation (2015). The 2015 Quality of Death Index: Ranking Palliative Care across the world. Economist Intelligence Unit, The Economist, London UK, 2015. Accessed Sept 24, 2021. < http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf>

Shuster E. Fifty years later: the significance of the Nuremberg Code. N Engl J Med. 1997 Nov 13;337(20):1436-40.

Gursahani R, Khadilkar S. Death & dying in India: circa 2018: what the conscientious physician needs to know. J Assoc Phy Ind 2018; 66:11-12

Jamison DT, Alwan A, Mock CN et al (2018). Universal health coverage and intersectoral action for health: key messages from Disease Control Priorities, 3rd edition. Lancet 391(10125):1108-1120

Hawley PH. The bow tie model of 21st century palliative care. J Pain Symptom Manage. 2014 Jan;47(1):e2-5

Creutzfeldt CJ, Kluger B, Kelly AG, Lemmon M, Hwang DY, Galifianakis NB, Carver A, Katz M, Curtis JR, Holloway RG. Neuropalliative care: Priorities to move the field forward. Neurology. 2018 Jul 31;91(5):217-226

Brizzi K, Creutzfeldt CJ. Neuropalliative Care: A Practical Guide for the Neurologist. Semin Neurol. 2018 Oct;38(5):569-575

Robinson MT, Holloway RG. Palliative Care in Neurology. Mayo Clin Proc. 2017 Oct;92(10):1592-1601.

Gursahani R. Palliative care and the Indian neurologist. Ann Indian Acad Neurol. 2016 Oct;19(Suppl 1):S40-S44.

Gursahani R, Mani RK, Simha S. Making end-of-life and palliative care viable in India: A blueprint for action. Natl Med J India. 2019 May-Jun;32(3):129-133.

Azeez EPA, Anbuselvi G. Is the Kerala Model of Community-Based Palliative Care Operations Sustainable? Evidence from the Field. Indian J Palliat Care. 2021 Jan-Mar;27(1):18-22.

Philip RR, Philip S, Tripathy JP, Manima A, Venables E. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC Palliat Care. 2018 Feb 14;17(1):26.