Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients
Abstract
:1. Introduction
“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”—Paul Kalanithi. When Breath Becomes Air
1.1. Epidemiology of CHD
1.2. CHD and the Need for Pediatric PC Engagement
1.3. Objectives
2. Discussion
“Death is not the opposite of life, but a part of it.”—Haruki Murakami. Norwegian Wood
2.1. Prenatal Diagnosis of CHD and Maternal Stress
2.2. Models for Integration of Pediatric PC into Perinatal Cardiology
“Remember it always. Remember that you and I made this journey and went together to a place where there was nowhere left to go.”—Jhumpa Lahiri. The Namesake
2.3. High-Risk Subsets of Neonates with CHD: Prematurity
2.4. High-Risk Subsets of Neonates with CHD: Genetic Anomalies
2.5. Technological Advances, Burdens, and Challenging Decisions in Infant Survivors with CHD
2.6. Provision of Optimal Pediatric PC Services in a Multi-Cultural, Global Society
“‘Tell us please, what treatment in an emergency is administered by ear?’...I met his gaze and I did not blink. ‘Words of comfort,’ I said to my father.”—Abraham Varghese. Cutting for Stone
2.7. Barriers to Utilization of Pediatric PC Services for Perinatal and Neonatal Patients with CHD
2.8. Increased Need for Pediatric PC Services during the COVID-19 Pandemic
3. Conclusions
“Endings matter, not just for the person but, perhaps even more, for the ones left behind.”—Atul Gawande. Being Mortal: Medicine and What Matters in the End
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Acknowledgments
Conflicts of Interest
References
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Transition | Pediatric PC Involvement |
---|---|
Learning the diagnosis prenatally | “Big picture” discussions and psychosocial support with the likelihood of a poor outcome |
Learning the diagnosis postnatally | Psychosocial support Increased parent education Continuity of care |
New normal | Pain and symptom management Decision making support Care coordination Expanded support network with peer and emotional support |
Taking control | Discussion regarding quality of life Respite care Advanced care planning |
Learning death is likely | Anticipatory guidance Transition to hospice care Memory making |
After death | Bereavement support Social and Emotional Support |
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Afonso, N.S.; Ninemire, M.R.; Gowda, S.H.; Jump, J.L.; Lantin-Hermoso, R.L.; Johnson, K.E.; Puri, K.; Hope, K.D.; Kritz, E.; Achuff, B.-J.; et al. Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients. Children 2021, 8, 548. https://doi.org/10.3390/children8070548
Afonso NS, Ninemire MR, Gowda SH, Jump JL, Lantin-Hermoso RL, Johnson KE, Puri K, Hope KD, Kritz E, Achuff B-J, et al. Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients. Children. 2021; 8(7):548. https://doi.org/10.3390/children8070548
Chicago/Turabian StyleAfonso, Natasha S., Margaret R. Ninemire, Sharada H. Gowda, Jaime L. Jump, Regina L. Lantin-Hermoso, Karen E. Johnson, Kriti Puri, Kyle D. Hope, Erin Kritz, Barbara-Jo Achuff, and et al. 2021. "Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients" Children 8, no. 7: 548. https://doi.org/10.3390/children8070548