Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium “Best Interests and Beyond: Standards of Decision Making in Pediatrics” in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question “In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?” The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.
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September 2023
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August 09 2023
Pediatric Decision Making: Consensus Recommendations
Erica K. Salter, PhD;
aSaint Louis University, Saint Louis, Missouri
Address correspondence to Erica K. Salter, PhD, 3545 Lafayette Ave, St Louis, MO 63104. E-mail: erica.salter@slu.edu
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D. Micah Hester, PhD;
D. Micah Hester, PhD
bUniversity of Arkansas for Medical Sciences, College of Medicine, Department of Medical Humanities & Bioethics, Little Rock, Arkansas
cArkansas Children’s Hospital, Little Rock, Arkansas
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Lou Vinarcsik, BS;
Lou Vinarcsik, BS
aSaint Louis University, Saint Louis, Missouri
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Armand H. Matheny Antommaria, MD, PhD;
Armand H. Matheny Antommaria, MD, PhD
dCincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
eUniversity of Cincinnati College of Medicine, Cincinnati, Ohio
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Johan Bester, MBChB, PhD;
Johan Bester, MBChB, PhD
aSaint Louis University, Saint Louis, Missouri
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Jeffrey Blustein, PhD;
Jeffrey Blustein, PhD
fCity College of New York, New York, New York
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Ellen Wright Clayton, MD, JD;
Ellen Wright Clayton, MD, JD
gVanderbilt University Medical Center & Vanderbilt University, Nashville, Tennessee
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Douglas S. Diekema, MD, MPH;
Douglas S. Diekema, MD, MPH
hUniversity of Washington School of Medicine, Seattle, Washington
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Ana S. Iltis, PhD;
Ana S. Iltis, PhD
iWake Forest University, Winston-Salem, North Carolina
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Loretta M. Kopelman, PhD;
Loretta M. Kopelman, PhD
jEast Carolina University, Greenville, North Carolina
kGeorgetown University, Washington, District of Columbia
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Jay R. Malone, MD, PhD;
Jay R. Malone, MD, PhD
lWashington University, Saint Louis, Missouri
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Mark R. Mercurio, MD, MA;
Mark R. Mercurio, MD, MA
mYale School of Medicine, New Haven, Connecticut
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Mark C. Navin, PhD;
Mark C. Navin, PhD
nOakland University, Rochester, Michigan
oCorwell Health East, Southfield, Michigan
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Erin Talati Paquette, MD, JD, MBe;
Erin Talati Paquette, MD, JD, MBe
pNorthwestern University, Chicago, Illinois
qAnn & Robert H. Lurie Children’s Hospital of Chicago, Chicago, Illinois
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Thaddeus Mason Pope, JD, PhD;
Thaddeus Mason Pope, JD, PhD
rMitchell Hamline School of Law, St Paul, Minnesota
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Rosamond Rhodes, PhD;
Rosamond Rhodes, PhD
sIcahn School of Medicine at Mount Sinai, New York, New York
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Lainie F. Ross, MD, PhD
Lainie F. Ross, MD, PhD
tUniversity of Chicago, Chicago, Illinois
uUniversity of Rochester, Rochester New York
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Address correspondence to Erica K. Salter, PhD, 3545 Lafayette Ave, St Louis, MO 63104. E-mail: erica.salter@slu.edu
Pediatrics (2023) 152 (3): e2023061832.
Article history
Accepted:
June 06 2023
Citation
Erica K. Salter, D. Micah Hester, Lou Vinarcsik, Armand H. Matheny Antommaria, Johan Bester, Jeffrey Blustein, Ellen Wright Clayton, Douglas S. Diekema, Ana S. Iltis, Loretta M. Kopelman, Jay R. Malone, Mark R. Mercurio, Mark C. Navin, Erin Talati Paquette, Thaddeus Mason Pope, Rosamond Rhodes, Lainie F. Ross; Pediatric Decision Making: Consensus Recommendations. Pediatrics September 2023; 152 (3): e2023061832. 10.1542/peds.2023-061832
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Neurodisability, where does it fit? Who is the clinician?
We would like to address two issues in response to the paper. Firstly, we would suggest that modifications should also be considered for children with neurodisability, specifically those with severe neurological impairment and those with complex communication needs. These two populations represent children and adolescents who typically have complex medical needs, and for whom high stakes decisions often need to be made by parents and clinicians. The needs of these two groups cannot be subsumed into the norms described in these recommendations. Our assertion is that this is an additional group for which there are remaining concerns and considerations not addressed by these recommendations.
The second issue relates to the role of the clinician as described by the recommendations. This paper details the obligations of the clinician to “Protect and Promote Their Pediatric Patients’ Health Interests” (Recommendation # 3) – highlighting the duty to remain up to date with advancements and provide care informed by evidence. However, clinical experience and expertise are not value neutral – clinician’s values and beliefs do influence their practice, communication, and potentially even the prognostic message they deliver 2,3. Clinicians are recognised to have different views to parents about the quality of a child’s life, and this is especially the case when a child is likely to have a neurodisability4. We suggest that the duty of the clinician should extend to recognise the potential impact of their personal beliefs and values in decision-making2. We would also claim that detachment and neutrality may also impair the success of complex decision-making, as it removes the clinician from the emotional dilemma faced by the parent 5,6. It is well recognised that empathy and curiosity enable families to be more open and share information, and this can have a positive impact on clinical outcomes 5. We suggest that the duty of the clinician (Recommendation # 3) should be expanded to include the importance of clinician held beliefs and values. Moreover, we suggest that emotion-based engagement6 will enhance the process and increase the success of the communication and decision-making as suggested in recommendation #5.
1. Salter EK, Hester DM, Vinarcsik L, et al. Pediatric Decision Making: Consensus Recommendations. Pediatrics. Sep 1 2023;152(3)doi:10.1542/peds.2023-061832
2. Ubel PA. Afterword: Giving good advice: it is not what doctors say, but how they say it. Curr Probl Pediatr Adolesc Health Care. Apr 2011;41(4):128-30. doi:10.1016/j.cppeds.2010.10.009
3. Lam HS, Wong SP, Liu FY, Wong HL, Fok TF, Ng PC. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics. Jun 2009;123(6):1501-8. doi:10.1542/peds.2008-2061
4. Haward MF, Janvier A, Lorenz JM, Fischhoff B. Counseling parents at risk of delivery of an extremely premature infant: Differing strategies. AJOB empir. 2017;8(4):243-252.
5. Halpern J. From idealized clinical empathy to empathic communication in medical care. Med Health Care Philos. May 2014;17(2):301-11. doi:10.1007/s11019-013-9510-4
6. Antolovich G, McDougall R. 'Doctor, isn't there anything else you can do?': The ethics of information sharing with parents in paediatric care. J Paediatr Child Health. Aug 2 2023;doi:10.1111/jpc.16465