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Red flags: a case series of clinician–family communication challenges in the context of CHD

Published online by Cambridge University Press:  16 January 2017

Priya Sekar*
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics. Charlotte R. Bloomberg Children’s Center, Johns Hopkins Hospital, Baltimore, Maryland, United States of America
Katie L. Marcus
Affiliation:
Johns Hopkins University School of Medicine, Baltimore, Maryland, United States of America
Erin P. Williams
Affiliation:
Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, United States of America
Renee D. Boss
Affiliation:
Johns Hopkins University School of Medicine, Baltimore, Maryland, United States of America Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, United States of America
*
Correspondence to: P. Sekar, Division of Pediatric Cardiology, Department of Pediatrics, Charlotte R Bloomberg Children’s Center, Johns Hopkins Hospital, 1800 Orleans Street, Baltimore, MD 21287, United States of America. Tel: 410 955 5987; Fax: 410 955 0897; E-mail: psekar1@jhmi.edu

Abstract

We describe three cases of newborns with complex CHD characterised by communication challenges. These communication challenges were categorised as patient, family, or system-related red flags. Strategies for addressing these red flags were proposed, for the goal of optimising care and improving quality of life in this vulnerable population.

Type
Brief Report
Copyright
© Cambridge University Press 2017 

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References

1. Kahn, JM, Le, T, Angus, DC, et al. The epidemiology of chronic critical illness in the United States. Crit Care Med 2015; 43: 282287.Google Scholar
2. Namachivayam, SP, Alexander, J, Slater, A, et al. Five-year survival of children with chronic critical illness in Australia and New Zealand. Crit Care Med 2015; 43: 19781985.Google Scholar
3. Boss, R, Nelson, J, Weissman, D, et al. Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board. Pediatr Crit Care Med 2014; 15: 762767.Google Scholar
4. Marcus, KL, Henderson, CM, Boss, RD. Chronic critical illness in infants and children: a speculative synthesis on adapting ICU care to meet the needs of long-stay patients. Pediatr Crit Care Med 2016; 17: 743752.Google Scholar
5. Svensson, B, Idvall, E, Nilsson, F, Liuba, P. Health-related quality of life in children with surgery for CHD: a study from the Swedish National Registry for Congenital Heart Disease. Cardiol Young 2016; 111; https://doi.org/ doi: 10.1017/S1047951116000585.Google Scholar
6. Hehir, DA, Easley, RB, Byrnes, J. Noncardiac challenges in the cardiac ICU: feeding, growth and gastrointestinal complications, anticoagulation, and analgesia. World J Pediatr Congenit Heart Surg 2016; 7: 199209.Google Scholar
7. Blume, ED, Balkin, EM, Aiyagari, R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatr Crit Care Med 2014; 15: 336342.Google Scholar
8. Keele, L, Keenan, HT, Sheetz, J, Bratton, SL. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics 2013; 132: 7278.Google Scholar