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Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study

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Abstract

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2–49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur “too late” and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as “referring to palliative care services too early will undermine parents’ hope” (45%) and “concern that parents will think I am giving up on their child” (56%). Only 33% of cardiologists reported feeling “very” or “moderately” competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6–8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8–21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.

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References

  1. Rossano JW, Kim JJ, Decker JA et al (2012) Prevalence, morbidity, and mortality of heart failure-related hospitalizations in children in the United States: a population-based study. J Card Fail 18:459–470. doi:10.1016/j.cardfail.2012.03.001

    Article  PubMed  Google Scholar 

  2. Morell E, Wolfe J, Scheurer M et al (2012) Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med 166:745–748. doi:10.1001/archpediatrics.2011.1829

    Article  PubMed  PubMed Central  Google Scholar 

  3. Blume ED, Balkin EM, Aiyagari R et al (2014) 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 15:336–342. doi:10.1097/PCC.0000000000000072

    Article  PubMed  Google Scholar 

  4. Balkin EM, Wolfe J, Ziniel SI et al (2015) Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. J Palliat Med 18:318–323. doi:10.1089/jpm.2014.0305

    Article  PubMed  Google Scholar 

  5. Hilton-Kamm D, Sklansky M, Chang RK (2014) How not to tell parents about their child’s new diagnosis of congenital heart disease: an internet survey of 841 parents. Pediatr Cardiol 35:239–252. doi:10.1007/s00246-013-0765-6

    Article  PubMed  Google Scholar 

  6. Arya B, Glickstein JS, Levasseur SM, Williams IA (2013) Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis 8:78–85. doi:10.1111/j.1747-0803.2012.00706.x

    Article  PubMed  Google Scholar 

  7. Kon AA, Ackerson L, Lo B (2004) How pediatricians counsel parents when no “best-choice” management exists: lessons to be learned from hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 158:436–441. doi:10.1001/archpedi.158.5.436

    Article  PubMed  Google Scholar 

  8. Wolfe J, Hammel JF, Edwards KE et al (2008) Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26:1717–1723. doi:10.1200/JCO.2007.14.0277

    Article  PubMed  Google Scholar 

  9. Vern-Gross TZ, Lam CG, Graff Z et al (2015) Patterns of end-of-life care in children with advanced solid tumor malignancies enrolled on a palliative care service. J Pain Symptom Manag 50:305–312. doi:10.1016/j.jpainsymman.2015.03.008

    Article  Google Scholar 

  10. Kassam A, Skiadaresis J, Alexander S, Wolfe J (2015) Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 62:1409–1413. doi:10.1002/pbc.25530

    Article  PubMed  Google Scholar 

  11. Schmidt P, Otto M, Hechler T et al (2013) Did increased availability of pediatric palliative care lead to improved palliative care outcomes in children with cancer? J Palliat Med 16:1034–1039. doi:10.1089/jpm.2013.0014

    Article  PubMed  Google Scholar 

  12. Keele L, Keenan HT, Sheetz J, Bratton SL (2013) Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics 132:72–78. doi:10.1542/peds.2013-0470

    Article  PubMed  Google Scholar 

  13. Ullrich CK, Lehmann L, London WB et al (2016) End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Blood Marrow Transpl 22:1049–1055. doi:10.1016/j.bbmt.2016.02.012

    Article  Google Scholar 

  14. Kirkpatrick JN, Hauptman PJ, Swetz KM et al (2016) Palliative care for patients with end-stage cardiovascular disease and devices: a report from the palliative care working group of the geriatrics section of the American College of Cardiology. JAMA Intern Med 176:23–25. doi:10.1001/jamainternmed.2016.2096

    Article  Google Scholar 

  15. Sanderson A, Hall AM, Wolfe J (2016) Advance care discussions: pediatric clinician preparedness and practices. J Pain Symptom Manag 51:520–528. doi:10.1016/j.jpainsymman.2015.10.014

    Article  Google Scholar 

  16. Jensen J, Weng C, Spraker-Perlman HL (2017) A provider-based survey to assess bereavement care knowledge, attitudes, and practices in pediatric oncologists. J Palliat Med 20:266–272. doi:10.1089/jpm.2015.0430

    Article  PubMed  Google Scholar 

  17. Walsh MJ, Verghese GR, Ferguson ME et al (2017) Counseling practices for fetal hypoplastic left heart syndrome. Pediatr Cardiol. doi:10.1007/s00246-017-1601-1

    PubMed  Google Scholar 

  18. Young AA, Simpson C, Warren AE (2017) Practices and attitudes of canadian cardiologists caring for patients with trisomy 18. Can J Cardiol 33:548–551. doi:10.1016/j.cjca.2016.11.007

    Article  PubMed  Google Scholar 

  19. Davies B, Sehring SA, Partridge JC et al (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121:282–288. doi:10.1542/peds.2006-3153

    Article  PubMed  Google Scholar 

  20. Knapp C, Thompson L (2012) Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California. Palliat Med 26:268–274. doi:10.1177/0269216311409085

    Article  PubMed  Google Scholar 

  21. Twamley K, Craig F, Kelly P et al (2014) Underlying barriers to referral to paediatric palliative care services: knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom. J Child Health Care 18:19–30. doi:10.1177/1367493512468363

    Article  PubMed  Google Scholar 

  22. Jünger S, Vedder AE, Milde S et al (2010) Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives. BMC Palliat Care 9:11. doi:10.1186/1472-684X-9-11

    Article  PubMed  PubMed Central  Google Scholar 

  23. Levine DR, Mandrell BN, Sykes A et al (2017) Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol. doi:10.1001/jamaoncol.2017.0368

    Google Scholar 

  24. Friedrichsdorf SJ, Drake R, Webster ML (2011) Textbook of interdisciplinary pediatric palliative care. Textb Interdiscip Pediatr Palliat Care. doi:10.1016/B978-1-4377-0262-0.00033-5

    Google Scholar 

  25. World Health Organization (2015) WHO Definition of Palliative Care. www.who.int/cancer/palliative/definition/en. Accessed 1 Jan 2017

  26. Dunlay SM, Foxen JL, Cole T et al (2014) A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure. Palliat Med 29:260–267. doi:10.1177/0269216314556565

    Article  PubMed  Google Scholar 

  27. Cunningham CT, Quan H, Hemmelgarn B et al (2015) Exploring physician specialist response rates to web-based surveys. BMC Med Res Methodol 15:32. doi:10.1186/s12874-015-0016-z

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

This study was supported in part by the Advanced Cardiac Therapies Fund at Boston Children’s Heart Center. We thank the physicians who participated in this study for sharing their experiences and perspectives. Additionally, we thank Minmin Lu for her assistance with biostatistical analysis.

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Authors and Affiliations

  1. Department of Pediatrics, UCSF Benioff Children’s Hospital, University of California San Francisco, San Francisco, CA, USA

    Emily Morell Balkin

  2. Division of Cardiology, University of Washington, Seattle, WA, USA

    James N. Kirkpatrick

  3. Division of Pediatric Cardiology, Department of Pediatrics, Stanford University School of Medicine, Stanford University, Palo Alto, CA, USA

    Beth Kaufman

  4. Division of Gerontology, Geriatrics and Palliative Care, University of Alabama–Birmingham, Birmingham, AL, USA

    Keith M. Swetz

  5. Department of Cardiology, Boston Children’s Hospital, 300 Longwood Avenue, Boston, MA, 02115, USA

    Lynn A. Sleeper & Elizabeth D. Blume

  6. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

    Joanne Wolfe

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  1. Emily Morell Balkin
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  2. James N. Kirkpatrick
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  3. Beth Kaufman
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  5. Lynn A. Sleeper
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  6. Joanne Wolfe
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  7. Elizabeth D. Blume
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Correspondence to Emily Morell Balkin.

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None of the authors have conflicts of interest to declare.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Balkin, E.M., Kirkpatrick, J.N., Kaufman, B. et al. Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study. Pediatr Cardiol 38, 1324–1331 (2017). https://doi.org/10.1007/s00246-017-1663-0

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  • DOI: https://doi.org/10.1007/s00246-017-1663-0

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