Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support
Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient’s hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
KeywordsCardiac Pediatric Palliative End-of-life Collaboration Single ventricle
We would like to acknowledge Victoria von Sadovszky, PhD, RN, FAAN and Cliff Cua, MD for their mentoring and Kevin Dolan for his assistance with the figures.
Compliance with Ethical Standards
Conflict of interest
The authors declare they have no conflict of interest.
This article does not contain any studies with human participants or animals performed by any of the authors.
Informed Consent: There is no identifying information about participants in the article.
- 4.Downing TE, Allen KY, Glatz AC, Rogers LS, Ravishankar C, Rychik J, Faerber JA, Fuller S, Montenegro LM, Steven JM, Spray TL, Nicolson SC, Gayton JW, Goldberg DJ (2017) Long-term survival after the Fontan operation: twenty years of experience at a single center. J Thorac Cardiovasc Surg 154(1):243–253. https://doi.org/10.1016/j.jtcvs.2017.01.056 CrossRefPubMedGoogle Scholar
- 8.Costello JM, Mussatto K, Cassedy A, Wray J, Mahony L, Teele SA, Brown KL, Franklin RC, Wernovsky G, Marino BS (2015) Prediction by clinicians of quality of life for children and adolescents with cardiac disease. J Pediatr 166(3):679–683. https://doi.org/10.1016/j.jpeds.2014.11.061 CrossRefPubMedPubMedCentralGoogle Scholar
- 12.Baker-Smith CM, Neish SR, Klitzner TS, Beekman RH, Kugler JD, Martin GR, Lannon C, Jenkins KJ, Rosenthal GL (2011) Variation in postoperative care following stage I palliation for single-ventricle patients: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative. Congenit Heart Dis 6(2):116–127. https://doi.org/10.1111/j.1747-0803.2011.00507.x CrossRefPubMedGoogle Scholar
- 13.Pasquali SK, Li JS, Burstein DS, Sheng S, O’Brien SM, Jacobs ML, Jaquiss RD, Peterson ED, Gaynor JW, Jacobs JP (2012) Association of center volume with mortality and complications in pediatric heart surgery. Pediatrics 129(2):e370–e376. https://doi.org/10.1542/peds.2011-1188 CrossRefPubMedPubMedCentralGoogle Scholar
- 14.Texter K, Davis JAM, Phelps C, Cheatham S, Cheatham J, Galantowicz M, Felters TF (2017) Building a comprehensive team for the longitudinal care of single ventricle heart defects: building blocks and initial results. Congenit Heart Dis 12(4):403–410. https://doi.org/10.1111/chd.12459 CrossRefPubMedGoogle Scholar
- 19.Hancock HS, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, Yu S, Welch S, Donohue J, Lowery R, Aiyagari R (2018) A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiol Young 28(4):561–570. https://doi.org/10.1017/S1047951117002761 CrossRefPubMedGoogle Scholar