Ethical considerations in the care of encephalopathic neonates treated with therapeutic hypothermia

Seminars in Fetal and Neonatal Medicine - Tập 26 - Trang 101258 - 2021
Monica E. Lemmon1, Courtney J. Wusthoff2, Renee D. Boss3, Lisa Anne Rasmussen4
1Division of Pediatric Neurology and Developmental Medicine, Departments of Pediatrics and Population Health Sciences, Duke University School of Medicine, DUMC 3936, Durham, NC, 27710, USA
2Departments of Neurology and Pediatrics, Stanford University, Stanford, 750 Welch Road, Suite 317, Palo Alto, CA, 94304, USA
3Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Berman Institute of Bioethics, 200 N. Wolfe St, Suite 2019, Baltimore, MD, 21287, United States
4Division of Palliative Care, Department of Family Medicine, Department of Neurology, Department of Pediatrics, Larner College of Medicine, University of Vermont, UVM Medical Center Palliative Care, 111 Colchester Avenue, Main Campus, Smith 262, Burlington, VT, 05401-1473, USA

Tài liệu tham khảo

Azzopardi, 2009, Moderate hypothermia to treat perinatal asphyxial encephalopathy, N Engl J Med, 361, 1349, 10.1056/NEJMoa0900854 Shankaran, 2005, Whole-body hypothermia for neonates with hypoxic-ischemic encephalopathy, N Engl J Med, 353, 1574, 10.1056/NEJMcps050929 Peloquin, 2016, The neurointensive care nursery and evolving roles for nursing, Neonatal Netw, 35, 87, 10.1891/0730-0832.35.2.87 Glass, 2014, Interdisciplinary approach to neurocritical care in the intensive care nursery, Semin Pediatr Neurol, 21, 241, 10.1016/j.spen.2014.10.003 Glass, 2010, Neurocritical care for neonates, Neurocritical Care, 12, 421, 10.1007/s12028-009-9324-7 Lemmon, 2016, Communication challenges in neonatal encephalopathy, Pediatrics, 138, 10.1542/peds.2016-1234 Mackley, 2010, Forgotten parent: NICU paternal emotional response, Ethical Issues in Newborn Care, 10, 200 Miles, 2007, Depressive symptoms in mothers of prematurely born infants, J Dev Behav Pediatr, 28, 36, 10.1097/01.DBP.0000257517.52459.7a Buckman, 2002, Communications and emotions, BMJ (Clinical research ed), 325, 672, 10.1136/bmj.325.7366.672 Hynan, 2013, Screening parents of high-risk infants for emotional distress: rationale and recommendations, J Perinatol, 33, 748, 10.1038/jp.2013.72 Hynan, 2015, Recommendations for mental health professionals in the NICU, J Perinatol, 35, S14, 10.1038/jp.2015.144 Baile, 2000, SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer, Oncol, 5, 302, 10.1634/theoncologist.5-4-302 van Breemen, 2018, Adapting the serious illness conversation guide for use in pediatrics, J Palliat Med, 21, 1683, 10.1089/jpm.2018.0515 Back, 2009, Faculty development to change the paradigm of communication skills teaching in oncology, J Clin Oncol: official journal of the American Society of Clinical Oncology, 27, 1137, 10.1200/JCO.2008.20.2408 Weiss, 2018, Characteristics associated with preferences for parent-centered decision making in neonatal intensive care, JAMA Pediatr, 172, 461, 10.1001/jamapediatrics.2017.5776 Caeymaex, 2013, Perceived role in end-of-life decision making in the NICU affects long-term parental grief response, Arch Dis Child Fetal Neonatal Ed, 98, F26, 10.1136/archdischild-2011-301548 Weaver, 2020, “Good-Parent beliefs”: research, concept, and clinical practice, Pediatrics, 145, 10.1542/peds.2019-4018 Lemmon, 2016, Palliative care in neonatal neurology: robust support for infants, families and clinicians, J Perinatol, 36, 331, 10.1038/jp.2015.188 Rasmussen, 2016, A qualitative study of physician perspectives on prognostication in neonatal hypoxic ischemic encephalopathy, J Child Neurol, 31, 1312, 10.1177/0883073816656400 Racine, 2009, Ethics in neonatal neurology: when is enough, enough?, Pediatr Neurol, 40, 147, 10.1016/j.pediatrneurol.2008.09.013 Shevell, 1999, Neonatal neurologic prognostication: the asphyxiated term newborn, Pediatr Neurol, 21, 776, 10.1016/S0887-8994(99)00102-2 Pal, 2016, Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care, Acta Paediatr, 105, 468, 10.1111/apa.13279 Ferrand, 2018, Resilience rather than medical factors: how parents predict quality of life of their sick newborn, J Pediatr, 200, 64, 10.1016/j.jpeds.2018.05.025 Rasmussen, 2019, The complexity of physicians' understanding and management of prognostic uncertainty in neonatal hypoxic-ischemic encephalopathy, J Perinatol, 39, 278, 10.1038/s41372-018-0296-3 Boss, 2017, Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors, J Perinatol, 37, 1224, 10.1038/jp.2017.118 Smith, 2013, Uncertainty--the other side of prognosis, N Engl J Med, 368, 2448, 10.1056/NEJMp1303295 Racine, 2017, The ‘ouR-HOPE’ approach for ethics and communication about neonatal neurological injury, Dev Med Child Neurol, 59, 125, 10.1111/dmcn.13343 Emanuel, 1992, Four models of the physician-patient relationship, Jama, 267, 2221, 10.1001/jama.1992.03480160079038 Sullivan, 2020, Historical perspectives: shared decision making in the NICU, NeoReviews, 21, e217, 10.1542/neo.21-4-e217 Bester, 2018, The harm principle cannot replace the best interest standard: problems with using the harm principle for medical decision making for children, Am J Bioeth, 18, 9, 10.1080/15265161.2018.1485757 Rhodes, 2014, Is the best interest standard good for pediatrics?, Pediatrics, 134, S121, 10.1542/peds.2014-1394H Diekema, 2004, Parental refusals of medical treatment: the harm principle as threshold for state intervention, Theor Med Bioeth, 25, 243, 10.1007/s11017-004-3146-6 Gillam, 2015, The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child, Clin Ethics, 11, 1, 10.1177/1477750915622033 Wightman, 2019, The relational potential standard: rethinking the ethical justification for life-sustaining treatment for children with profound cognitive disabilities, Hastings Cent Rep, 49, 18, 10.1002/hast.1003 Wilkinson, 2020, The relational threshold: a life that is valued, or a life of value?, J Med Ethics, 46, 24, 10.1136/medethics-2019-106017 Kon, 2016, Defining futile and potentially inappropriate interventions: a policy statement from the society of critical care medicine ethics committee, Crit Care Med, 44, 1769, 10.1097/CCM.0000000000001965 Weise, 2017, Guidance on forgoing life-sustaining medical treatment, Pediatrics, 140, 10.1542/peds.2017-1905 Katz, 2016, Informed consent in decision-making in pediatric practice, Pediatrics, 138, 10.1542/peds.2016-1485 Lantos, 2017, To whom do children belong?, Am J Bioeth, 17, 4, 10.1080/15265161.2017.1388032 Diekema, 2016, Decision-making for children with disabilities: parental discretion and moral ambiguity, Perspect Biol Med, 58, 328, 10.1353/pbm.2016.0007 Diekema, 2009, Clinical report--Forgoing medically provided nutrition and hydration in children, Pediatrics, 124, 813, 10.1542/peds.2009-1299 Nakagawa, 2011, Clinical report—guidelines for the determination of brain death in infants and children: an update of the 1987 task force recommendations, Pediatrics, 128, e720, 10.1542/peds.2011-1511 Bosslet, 2015, 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, 191, 1318, 10.1164/rccm.201505-0924ST Bonifacio, 2015, Impact of hypothermia on predictors of poor outcome: how do we decide to redirect care?, Semin Fetal Neonatal Med, 20, 122, 10.1016/j.siny.2014.12.011 Lemmon, 2019, Estimating neurologic prognosis in children: high stakes, poor data, JAMA Neurol, 76, 879, 10.1001/jamaneurol.2019.1157 Janvier, 2016, Measuring and communicating meaningful outcomes in neonatology: a family perspective, Semin Perinatol, 40, 571, 10.1053/j.semperi.2016.09.009 Thoresen, 2010, Effect of hypothermia on amplitude-integrated electroencephalogram in infants with asphyxia, Pediatrics, 126, e131, 10.1542/peds.2009-2938 Craig, 2018, Exploring parent experience of communication about therapeutic hypothermia in the neonatal intensive care unit, Adv Neonatal Care, 18, 136, 10.1097/ANC.0000000000000473 Pearce, 2012, Term MRI for small preterm babies: do parents really want to know and why has nobody asked them?, Acta Paediatr, 101, 1013, 10.1111/j.1651-2227.2012.02767.x Staub, 2014, Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth, Acta Paediatr, 103, 1035, 10.1111/apa.12716 Lemmon, 2019, Neurologic outcome after prematurity: perspectives of parents and clinicians, Pediatrics, 144, 10.1542/peds.2018-3819 Dorner, 2020, Parent preferences for neurodevelopmental screening in the neonatal intensive care unit, Dev Med Child Neurol, 62, 500, 10.1111/dmcn.14457 Weisleder, 2010, Unethical prescriptions: alternative therapies for children with cerebral palsy, Clin Pediatr (Phila)., 49, 7, 10.1177/0009922809340438 Racine, 2013, Chapter 21 - ethics in neurodevelopmental disability, vol. 118, 243 Walker, 2014, Ethical justifications for access to unapproved medical interventions: an argument for (limited) patient obligations, Am J Bioeth, 14, 3, 10.1080/15265161.2014.957416 Borysowski, 2017, Ethics review in compassionate use, BMC Med, 15, 136, 10.1186/s12916-017-0910-9 2009, vol. 21 Harrison, 1993, The principles for family-centered neonatal care, Pediatrics, 92, 643, 10.1542/peds.92.5.643 Appelbaum, 1987, False hopes and best data: consent to research and the therapeutic misconception, Hastings Cent Rep, 17, 20, 10.2307/3562038 Chalmers, 2018, Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices, BMJ Evid Based Med, 23, 29, 10.1136/ebmed-2017-110829 Lemmon, 2016, Parent experience of neonatal encephalopathy: the need for family-centered outcomes, J Child Neurol, 32, 286, 10.1177/0883073816680747 Lemmon, 2020, Parent experience of caring for neonates with seizures