Download PDF
Journal of Pediatric Epilepsy 2020; 9(03): 067-072
DOI: 10.1055/s-0040-1714354
Review Article

Exploring the Role of Pediatric Neurology in Determinations of Futility, Identifying Vulnerability, and Participating in Shared Decision Making through Case-Based Analysis

Julio Quezada 
1   Children's Mercy Hospital Kansas City, Missouri, United States
,
John D. Lantos 
2   Department of Pediatrics & Bioethics Center, University of Missouri-Kansas City, Children's Mercy Kansas City, Kansas City, Missouri, United States
› Author Affiliations
› Further Information
    Permissions and Reprints

Abstract

It is not uncommon for pediatric neurologists to encounter ethical dilemmas in clinical practice. These dilemmas not only require an exploration of the basic bioethical principles, but also considering that neurological disease can have impact on a person's self-identity. Patients with neurological disease are particularly vulnerable and at risk of having long-term sequelae of their nervous system and their individual selves. These important considerations can then raise the question of futility of treatment in a setting of uncertainty of outcome. In these complex situations, a pediatric neurologist plays an important role in shared decision making with both families and multidisciplinary teams. In this paper, we explore case-based scenarios that serve to demonstrate the unique character of ethics in neurology and the role of pediatric neurologists in finding solutions that are in a patient's best interest, have a minimal chance of harm, respect a patient's autonomy, and are just and promote justice.

Keywords

ethics in neurology - vulnerability - futility - social determinants of health in neurology


Publication History

Received: 25 May 2020

Accepted: 08 June 2020

Article published online:
20 July 2020

© 2020. Thieme. All rights reserved.

Georg Thieme Verlag KG
Stuttgart · New York

 

  • References

  • 1 Diekema DS, Mercurio MR, Adam MB. Clinical Ethics in Pediatrics: A Case-Based Textbook. Cambridge, United Kingdom: Cambridge University Press; 2011
    CrossrefGoogle Scholar
  • 2 Thomas RH, Hammond CL, Bodger OG, Rees MI, Smith PE. members of WERN & James Lind Alliance. Identifying and prioritising epilepsy treatment uncertainties. J Neurol Neurosurg Psychiatry 2010; 81 (08) 918-921
    CrossrefPubMedGoogle Scholar
  • 3 Mohanraj R, Brodie MJ. Diagnosing refractory epilepsy: response to sequential treatment schedules. Eur J Neurol 2006; 13 (03) 277-282
    CrossrefPubMedGoogle Scholar
  • 4 Sedney C, Kurowski-Burt A, Smith M, Dekeseredy P, Grey C, Boo S. Therapeutic nihilism of neurological diseases: a comparative qualitative study. J Clin Neurosci 2019; 69: 124-131
    CrossrefPubMedGoogle Scholar
  • 5 Biller J, Love BB. Nihilism and stroke therapy. Stroke 1991; 22 (09) 1105-1107
    CrossrefPubMedGoogle Scholar
  • 6 William O. , Sir. The Principles and Practice of Medicine. New York, NY: Harvard University; 1020
    Google Scholar
  • 7 Benjamin S, MacGillivray L, Schildkrout B, Cohen-Oram A, Lauterbach MD, Levin LL. Six landmark case reports essential for neuropsychiatric literacy. J Neuropsychiatry Clin Neurosci 2018; 30 (04) 279-290
    CrossrefPubMedGoogle Scholar
  • 8 Toulouse J, Hully M, Brossier D. , et al. The role of the neuropediatrician in pediatric intensive care unit: diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal. Eur J Paediatr Neurol 2019; 23 (01) 171-180
    CrossrefPubMedGoogle Scholar
  • 9 Gordon J. Thinking about ethical issues in neurology. AMA J Ethics 2004; 6 (08) DOI: 10.1001/virtualmentor.2004.6.8.fred1-0408.
    CrossrefPubMedGoogle Scholar
  • 10 Harris WB, Phillips HW, Chen JS, Weil AG, Ibrahim GM, Fallah A. Seizure outcomes in children with Rasmussen's encephalitis undergoing resective or hemispheric epilepsy surgery: an individual participant data meta-analysis. J Neurosurg Pediatr 2019; 25 (03) 1-10
    PubMedGoogle Scholar
  • 11 Verdinelli C, Olsson I, Edelvik A, Hallböök T, Rydenhag B, Malmgren K. A long-term patient perspective after hemispherotomy--a population based study. Seizure 2015; 30: 76-82
    CrossrefPubMedGoogle Scholar
  • 12 Matthews S, Tobin B. Human vulnerability in medical contexts. Theor Med Bioeth 2016; 37 (01) 1-7
    CrossrefPubMedGoogle Scholar
  • 13 Escalaya AL, Tellez-Zenteno JF, Steven DA, Burneo JG. Epilepsy and mortality in Latin America. Seizure 2015; 25: 99-103
    CrossrefPubMedGoogle Scholar
  • 14 Tanywe A, Matchawe C, Fernandez R. The experiences of people living with epilepsy in developing countries: a systematic review of qualitative evidence. JBI Database Syst Rev Implement Reports 2016; 14 (05) 136-192
    CrossrefPubMedGoogle Scholar
  • 15 Rodriguez D. WHO. Social determinants of health: social exclusion. Available at: https://www.who.int/social_determinants/themes/socialexclusion/en/ . Accessed June 24, 2020
    PubMedGoogle Scholar
  • 16 Andermann A. Taking Action on the Social Determinants of Health at a Local Health Department. Can Med Assoc J 2016; 188: 1-10
    CrossrefPubMedGoogle Scholar
  • 17 Carrizosa J, Braga P, Albuquerque M. , et al. Epilepsy for primary health care: a cost-effective Latin American E-learning initiative. Epileptic Disord 2018; 20 (05) 386-395
    CrossrefPubMedGoogle Scholar
  • 18 Jost J, Moyano LM, Auditeau E, Boumediene F, Ratsimbazafy V, Preux P-M. Interventional programs to improve therapeutic management of people with epilepsy in low- and middle-income countries. Epilepsy Behav 2018; 80: 337-345
    CrossrefPubMedGoogle Scholar
  • 19 Vaughan KA, Lopez Ramos C, Buch VP. , et al. An estimation of global volume of surgically treatable epilepsy based on a systematic review and meta-analysis of epilepsy. J Neurosurg 2018; 130 (04) 1-15
    Google Scholar