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Provider perspective on the role of palliative care in hypoplastic left heart syndrome

Published online by Cambridge University Press:  09 March 2020

Sarah Lowenstein ,
Robert Macauley ,
Kathleen Perko  and
Christina Ronai Open the ORCID record for Christina Ronai [Opens in a new window]
Sarah Lowenstein
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA
Robert Macauley
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA Bridges Palliative Care Program, Doernbecher Children’s Hospital, Portland, OR, USA
Kathleen Perko
Affiliation:
Bridges Palliative Care Program, Doernbecher Children’s Hospital, Portland, OR, USA
Christina Ronai*
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA Pediatric Cardiology, Doernbecher Children’s Hospital, Portland, OR, USA
*
Author for correspondence: C. Ronai, MD, MSEd, Department of Pediatrics, Division of Cardiology, Doernbecher Children’s Hospital, 707 SW Gaines St., CDRC-P, Portland, OR, 97239, USA. Tel: +1 503 494 9899; Fax: +503-418-5793. E-mail: [email protected]
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Abstract

Objective:

Hypoplastic left heart syndrome is a single ventricle defect. While staged surgical palliative treatments have revolutionised care, patients with hypoplastic left heart syndrome continue to have significant morbidity and mortality. In 2017, the National Pediatric Cardiology Quality Improvement Collaborative recommended all single ventricle patients to receive a prenatal palliative care consult. This study aimed to elucidate provider perspectives on the implementation of prenatal palliative care consults for families expecting a child with hypoplastic left heart syndrome.

Methods:

An online survey was administered to obstetric and paediatric providers of relevant disciplines to assess their experience with palliative care involvement in hypoplastic left heart syndrome cases.

Results:

Nearly, all physicians (97%) and most registered nurses (79%) agreed that the initial palliative care consult for patients with hypoplastic left heart syndrome should occur during the prenatal period. Respondents also indicated that prenatal palliative care consults should also be offered in a variety of other CHD conditions. Participants believed positive aspects of this new referral protocol included an expanded support network for families, decreased family stress during the postnatal period, increased patient education about what to expect during the postnatal period, and continuity of care.

Conclusion:

Multidisciplinary healthcare professionals believe that prenatal palliative care consults provide a variety of benefits for patients and families with hypoplastic left heart syndrome. Additional, multi-centre research is necessary to evaluate whether prenatal palliative care consults should become standard of care for families expecting a child with a single ventricle defect.

Keywords

Hypoplastic left heart syndromesingle ventricle defectpalliative caregoals of careprenatal diagnosis
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 3 , March 2020 , pp. 377 - 382
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Connor, JA, Thiagarajan, R. Hypoplastic left heart syndrome. Orphanet J Rare Dis 2007; 2: 23.CrossRefGoogle ScholarPubMed
Feinstein, JA, Benson, DW, Dubin, AM, et al.Hypoplastic left heart syndrome: current considerations and expectations. J Am Coll Cardiol 2012; 59 (1 Suppl): S1–42.CrossRefGoogle ScholarPubMed
Ohye, RG, Schranz, D, D’Udekem, Y. Current therapy for hypoplastic left heart syndrome and related single ventricle lesions. Circulation 2016; 134: 1265–1279.CrossRefGoogle ScholarPubMed
Brock, KE, Steineck, A, Twist, CJ. Trends in end-of-life care in pediatric hematology, oncology, and stem cell transplant patients. Pediatr Blood Cancer 2016; 63: 516–522.CrossRefGoogle ScholarPubMed
Johnston, EE, Rosenberg, AR, Kamal, AH. Pediatric-specific end-of-life care quality measures: an unmet need of a vulnerable population. J Oncol Pract 2017; 13: e874–e880.CrossRefGoogle ScholarPubMed
Klick, JC, Hauer, J. Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 2010; 40: 120–151.CrossRefGoogle ScholarPubMed
Wolfe, J, Hammel, JF, Edwards, KE, et al.Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 2008; 26: 1717–1723.CrossRefGoogle Scholar
American Academy of Pediatrics. Committee on bioethics and committee on hospital care. Palliative care for children. Pediatrics 2000; 106 (2 Pt 1): 351–357.Google Scholar
Feudtner, C, Kang, TI, Hexem, KR, et al.Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011; 127: 1094–1101.CrossRefGoogle ScholarPubMed
Bertaud, S, Lloyd, DF, Laddie, J, Razavi, R. The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease. Arch Dis Child 2016; 101: 984–987.CrossRefGoogle ScholarPubMed
May, R, Thompson, J. The role of pediatric palliative care in complex congenital heart disease: three illustrative cases. J Palliat Med 2017; 20: 1300–1303.CrossRefGoogle ScholarPubMed
Morell, E, Moynihan, K, Wolfe, J, Blume, ED. Palliative care and paediatric cardiology: current evidence and future directions. Lancet Child Adolesc Health 2019; 3: 502–510.CrossRefGoogle ScholarPubMed
Marcus, KL, Balkin, EM, Al-Sayegh, H, et al.Patterns and outcomes of care in children with advanced heart disease receiving palliative care consultation. J Pain Symptom Manage 2017; 55: 351–358.CrossRefGoogle ScholarPubMed
Steiner, JM, Stout, K, Soine, L, Kirkpatrick, JN, Curtis, JR. Perspectives on advance care planning and palliative care among adults with congenital heart disease. Congenit Heart Dis 2019; 14: 403–409.CrossRefGoogle ScholarPubMed
Rychik, J. What does palliative care mean in prenatal diagnosis of congenital heart disease? World J Pediatr Congenit Heart Surg 2013; 4: 80–84.CrossRefGoogle ScholarPubMed
Dalberg, T, Jacob-Files, E, Carney, PA, Meyrowitz, J, Fromme, EK, Thomas, G. Pediatric oncology providers’ perceptions of barriers and facilitators to early integration of pediatric palliative care. Pediatr Blood Cancer 2013; 60: 1875–1881.CrossRefGoogle ScholarPubMed
Balkin, EM, Kirkpatrick, JN, Kaufman, B, et al.Pediatric cardiology provider attitudes about palliative care: a multicenter survey study. Pediatr Cardiol 2017; 38: 1324–1331.CrossRefGoogle ScholarPubMed
Balkin, EM, Sleeper, LA, Kirkpatrick, JN, et al.Physician perspectives on palliative care for children with advanced heart disease: a comparison between pediatric cardiology and palliative care physicians. J Palliat Med 2018; 21: 773–779.CrossRefGoogle ScholarPubMed
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