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Erschienen in:

01.12.2023 | Cardiology/CT Surgery (K Gist, Section Editor)

Ethical Challenges at the Frontiers of Medical Care for Children with Congenital Heart Disease in the U.S

verfasst von: Mithya Lewis-Newby, MD, MPH, Emily R. Berkman, MD, MA, Douglas S. Diekema, MD, MPH, Aarti H. Bhat, MD, Jonna D. Clark, MD, MA

Erschienen in: Current Treatment Options in Pediatrics | Ausgabe 4/2023

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Abstract

Purposeof review

The past 8 decades have seen tremendous medical and technological advancements in the care of children with congenital heart disease (CHD). As with all medical care, there are boundaries of established practices, and at the frontiers of innovation we often encounter ethical challenges. This paper reviews the current ethical challenges that arise in the medical care of children with CHD.

Recent findings

Ethical challenges are present at the individual, community, population, and system levels. This paper reviews three main categories of ethical challenges: (1) challenges of equity, including those based on social determinants of health, genetic differences, neurologic differences, and the impact on allocation of scarce resources; (2) challenges of decision-making, including team decision-making, shared decision-making, limits of parental authority, requests for life-prolonging therapies, and end-of-life decisions; and (3) challenges to the healthcare system, including costs, resource utilization, economic and research competition, and healthcare worker psychological distress.

Summary

There will always be ethical challenges at the frontiers of our medical capabilities that have no easy solutions. Recognizing and acknowledging these ethical tensions is an important first step to overcome these challenges. Prioritizing healthcare equity, collaboration, transparency, and advocacy will help guide ethically sound decisions for the well-being of patients, families, healthcare providers, and the healthcare system as we continue to push the boundaries of what is possible.

1.•

Chowdhury D, Johnson JN, Baker-Smith CM, Jaquiss RDB, Mahendran AK, Curren V, Bhat A, Patel A, Marshall AC, Fuller S, Marino BS, Fink CM, Lopez KN, Frank LH, Ather M, Torentinos N, Kranz O, Thorne 1V, Davies RR, Berger S, Snyder C, Saidi A, Shaffer K. Health care policy and Congenital heart disease: 2020 focus on our 2030 future. J Am Heart Assoc 2021:10(20):e020605. https://doi.org/10.1161/JAHA.120.020605. This consensus statement identifies public health barriers to optimum patient outcomes in the care of children with congenital heart disease. The article highlights challenges for patient populations, healthcare delivery, and the healthcare workforce and makes recommendations for policy and advocacy efforts to address these barriers.

2.•

Lopez KN, Baker-Smith C, Flores G, Gurvitz M, Karamlou T, Nunez Gallegos F, Pasquali S, Patel A, Peterson JK, Salemi JL, Yancy C, Peyvandi S. American Heart Association Congenital Cardiac Defects Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young; Council on Epidemiology and Prevention; and Council on Lifestyle and Cardiometabolic Health. Addressing social determinants of health and mitigating health disparities across the lifespan in congenital heart disease: a scientific statement from the American Heart Association. J Am Heart Assoc. 2022;11(8):e025358. https://doi.org/10.1161/JAHA.122.025358. This AHA scientific statement outlines current disparities in outcomes for children with congenital heart disease and identifies a multitude of systemic factors that contribute to healthcare inequities. The article proposes strategies for reducing disparities as well as future research needs.CrossRefPubMedPubMedCentral

3.•

Karamlou T, Hawke JL, Zafar F, Kafle M, Tweddell JS, Najm HK, Frebis JR, Bryant JG. Widening our focus: characterizing socioeconomic and racial disparities in congenital heart disease. Ann thorac surg. 2022;113(1):157–65. https://doi.org/10.1016/j.athoracsur.2021.04.008. This study examines disparities in outcomes of children with congenital heart disease (CHD) based on socioeconomic and racial (SER) differences by querying the Pediatric Health Information System (PHIS) database. More than 166,000 admissions for CHD from 52 hospitals were identified and outcome disparities were identified based on SER differences, particularly for children with complex CHD.CrossRefPubMed

Delany DR, Gaydos SS, Romeo DA, Henderson HT, Fogg KL, McKeta AS, Kavarana MN, Costello JM. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis. 2021;5(1):7. https://doi.org/10.1186/s40949-021-00061-3.

5.••

Godown J, Fountain D, Bansal N, Ameduri R, Anderson S, Beasley G, Burstein D, Knecht K, Molina K, Pye S, Richmond M, Spinner JA, Watanabe J, West S, Reinhardt Z, Scheel J, Urschel S, Villa C, Hollander SA. Heart transplantation in children with down syndrome. J Am Heart Assoc. 2022;11(10):e024883. https://doi.org/10.1161/JAHA.121.024883. This retrospective case series investigates outcomes of children with trisomy 21 who received heart transplants between 1992 and 2020. Waitlist and transplant outcomes were found to be comparable to the general population of children receiving heart transplant. The authors suggest that trisomy 21 alone should not be considered an absolute contraindication to pediatric heart transplant.CrossRefPubMedPubMedCentral

Cooper DS, Riggs KW, Zafar F, Jacobs JP, Hill KD, Pasquali SK, Swanson SK, Gelehrter SK, Wallace A, Jacobs ML, Morales DLS, Bryant R. Cardiac surgery in patients with trisomy 13 and 18: an analysis of the society of thoracic surgeons’ congenital heart surgery database. J Am Heart Assoc. 2019;8(13):e012349. https://doi.org/10.1161/JAHA.119.012349.CrossRefPubMedPubMedCentral

7.••

Madrigal VN, Feltman DM, Leuthner SR, Kirsch R, Hamilton R, Dokken D, Needle J, Boss R, Lelkes E, Carter B, Macias E, Bhombal S. Bioethics for neonatal cardiac care. Pediatrics. 2022;150:e2022056415N. https://doi.org/10.1542/peds.2022-056415N. This AAP Supplement article identifies ethical issues that arise in the care of neonates with congenital heart disease. This article outlines ethical challenges and makes recommendations in the categories of fetal care, shared decision-making, genetic diagnoses, research, end-of-life care, healthcare equity, and outcomes reporting.CrossRefPubMed

Marelli A, Miller SP, Marino BS, Jefferson AL, Newburger JW. Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation. 2016;133(20):1951–62. https://doi.org/10.1161/CIRCULATIONAHA.115.019881.CrossRefPubMedPubMedCentral

Mebius MJ, Kooi EMW, Bilardo CM, Bos AF. Brain injury and neurodevelopmental outcome in congenital heart disease: a systematic review. Pediatrics. 2017;140(1):e20164055. https://doi.org/10.1542/peds.2016-4055.CrossRefPubMed

10.

Glotzbach KL, Ward JJ, Marietta J, Eckhauser AW, Winter S, Puchalski MD, Miller TA. The benefits and bias in neurodevelopmental evaluation for children with congenital heart disease. Pediatr cardiol. 2020;41(2):327–33. https://doi.org/10.1007/s00246-019-02260-7.CrossRefPubMed

11.

Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH Jr, Li J, Smith SE, Bellinger DC, Mahle WT. American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012;126(9):1143–72. https://doi.org/10.1161/CIR.0b013e318265ee8a.CrossRefPubMed

12.

Rossano JW, Kaufman BD, Rame JE. Ethical considerations related to the use of mechanical support in congenital heart disease. World J Pediatr Congenit Heart Surg. 2013;4(1):70–4. https://doi.org/10.1177/2150135112469040.CrossRefPubMed

13.••

Amdani S, Bhimani SA, Boyle G, Liu W, Worley S, Saarel E, Hsich E. Racial and ethnic disparities persist in the current era of pediatric heart transplantation. J Card Fail. 2021;27(9):957–64. https://doi.org/10.1016/j.cardfail.2021.05.027. This study investigates pediatric cardiac transplant waitlist and post-transplant disparities by race and ethnicity using the Scientific Registry of Transplant recipients database from 2011 to 2019. The authors identified increased waitlist mortality and increased post-transplant rejection episodes for African-American children.CrossRefPubMedPubMedCentral

14.

Berkman E, Wightman A, Friedland-Little JM, Albers EL, Diekema D, Lewis-Newby M. An ethical analysis of obesity as a determinant of pediatric heart transplant candidacy. Pediatr Transplant. 2021;25(3):e13913. https://doi.org/10.1111/petr.13913.CrossRefPubMed

15.

Opel DJ. A 4-step framework for shared decision-making in pediatrics. Pediatrics. 2018;142(Suppl 3):S149–56. https://doi.org/10.1542/peds.2018-0516E.

16.

Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor med bioeth. 2004;25(4):243–64. https://doi.org/10.1007/s11017-004-3146-6.CrossRefPubMed

17.

Bosslet GT, Pope TM, Rubenfeld GD, Lo B, Truog RD, Rushton CH, Curtis JR, Ford DW, Osborne M, Misak C, Au DH, Azoulay E, Brody B, Fahy BG, Hall JB, Kesecioglu J, Kon AA, Lindell KO, White DB. An Official ATS/AACN/ACCP/ESICM/SCCM Policy statement: responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med. 2015;191(11):1318–30. https://doi.org/10.1164/rccm.201505-0924ST.CrossRefPubMed

18.

Morell E, Wolfe J, Scheurer M, Thiagarajan R, Morin C, Beke DM, Smoot L, Cheng H, Gauvreau K, Blume ED. Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med. 2012;166(8):745–8. https://doi.org/10.1001/archpediatrics.2011.1829.CrossRefPubMedPubMedCentral

19.

Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, Taylor L, Kulik T, Pituch K, Wolfe J. 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(4):336–42. https://doi.org/10.1097/PCC.0000000000000072.CrossRefPubMed

20.

May R, Thompson J. The role of pediatric palliative care in complex congenital heart disease: three illustrative cases. J Palliat Med. 2017;20(11):1300–3. https://doi.org/10.1089/jpm.2017.0047.CrossRefPubMed

21.

Balkin EM, Kirkpatrick JN, Kaufman B, Swetz KM, Sleeper LA, Wolfe J, Blume ED. Pediatric cardiology provider attitudes about palliative care: a multicenter survey study. Pediatr Cardiol. 2017;38(7):1324–31. https://doi.org/10.1007/s00246-017-1663-0.CrossRefPubMed

22.

Simeone RM, Oster ME, Cassell CH, Armour BS, Gray DT, Honein MA. Pediatric inpatient hospital resource use for congenital heart defects. Birth Defects Res A Clin Mol Teratol. 2014;100(12):934–43. https://doi.org/10.1002/bdra.23262.CrossRefPubMedPubMedCentral

23.

Danford DA, Karels Q, Kutty S. Variabilities in the mortality-related resource utilisation for congenital heart disease. Open heart. 2016;3(1):e000415. https://doi.org/10.1136/openhrt-2016-000415.CrossRefPubMedPubMedCentral

Titel: Ethical Challenges at the Frontiers of Medical Care for Children with Congenital Heart Disease in the U.S
verfasst von: Mithya Lewis-Newby, MD, MPH
Emily R. Berkman, MD, MA
Douglas S. Diekema, MD, MPH
Aarti H. Bhat, MD
Jonna D. Clark, MD, MA
Publikationsdatum: 01.12.2023
Verlag: Springer International Publishing
Erschienen in: Current Treatment Options in Pediatrics / Ausgabe 4/2023
Elektronische ISSN: 2198-6088
DOI: https://doi.org/10.1007/s40746-023-00275-0

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Ethical Challenges at the Frontiers of Medical Care for Children with Congenital Heart Disease in the U.S