Belgium; Child; Female; Humans; Netherlands; Palliative Care/ethics; Suicide, Assisted/ethics; United States; Palliative Care; Suicide, Assisted; Pediatrics, Perinatology and Child Health
Abstract :
[en] What is the best way to care for a child with severe neurologic impairment who seems to be dying and is in intractable pain? Can we give sedation as we remove life support? Is it ethically permissible to hasten death? In the United States, 5 states have legalized assisted suicide (although only for competent adults). In Belgium and the Netherlands, euthanasia is legal for children under some circumstances. We present a case in which parents and doctors face difficult decisions about palliative care. Experts from Belgium, the Netherlands, and the United States then discuss how they would respond to such a case.
Disciplines :
Nursing Science
Author, co-author :
Clément de Cléty, Stéphan; Cliniques universitaires St Luc, Université catholique de Louvain, Brussels, Belgium
FRIEDEL, Marie ; University of Luxembourg > Faculty of Science, Technology and Medicine (FSTM) > Department of Life Sciences and Medicine (DLSM) > Medical Education ; Haute Ecole Vinci and Université catholique de Louvain, Brussels, Belgium
Verhagen, A A Eduard; Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, Netherlands, and
Lantos, John D; Children's Mercy Hospital and University of Missouri, Kansas City, Missouri jlantos@cmh.edu
Carter, Brian S; Children's Mercy Hospital and University of Missouri, Kansas City, Missouri
External co-authors :
yes
Language :
English
Title :
Please Do Whatever It Takes to End Our Daughter's Suffering!
Publication date :
January 2016
Journal title :
Pediatrics
ISSN :
0031-4005
eISSN :
1098-4275
Publisher :
American Academy of Pediatrics, Elk Grove Village, United States
Siegel AM, Sisti DA, Caplan AL. Pediatric euthanasia in Belgium: disturbing developments. JAMA. 2014;311(19):1963-1964
Dan B, Fonteyne C, de Cléty SC. Self-requested euthanasia for children in Belgium. Lancet. 2014;383(9918):671-672
Morrison W, Kang T. Judging the quality of mercy: drawing a line between palliation and euthanasia. Pediatrics. 2014;133(suppl 1):S31-S36
Weidner NJ, Plantz DM. Ethical considerations in the management of analgesia in terminally ill pediatric patients. J Pain Symptom Manage. 2014;48(5):998-1003
Friedel M. Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children? Int J Palliat Nurs. 2014;20(6):265-267
Inghelbrecht E, Bilsen J, Pereth H, Ramet J, Deliens L. Medical end-of-life decisions: experiences and attitudes of Belgian pediatric intensive care nurses. Am J Crit Care. 2009;18(2):160-168
Billings JA, Churchill LR. Monolithic moral frameworks: how are the ethics of palliative sedation discussed in the clinical literature? J Palliat Med. 2012;15(6):709-713
de Weerd W, van Tol D, Albers M, Sauer P, Verkerk M. Suffering in children: opinions from parents and healthcare professionals. Eur J Pediatr. 2015;174(5):589-595
Michelson KN, Patel R, Haber-Barker N, Emanuel L, Frader J. End-of-life care decisions in the PICU: roles professionals play. Pediatr Crit Care Med. 2013;14(1):e34-e44
World Health Organization. Defnition of palliative care. Available at: http://www.who.int/cancer/palliative/defnition/en/. Accessed October 11, 2015
Verhagen AA, Janvier A, Leuthner SR, et al. Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and the Netherlands. J Pediatr. 2010;156(1):33-37
Kutzsche S, Partridge JC, Leuthner SR, Lantos JD. When life-sustaining treatment is withdrawn and the patient doesn't die. Pediatrics. 2013;132(5):893-897
Sulmasy DP, Pellegrino ED. The rule of double effect: clearing up the double talk. Arch Intern Med. 1999;159(6):545-550
Willems DL, Verhagen AA, van Wijlick E; Committee End-of-Life Decisions in Severely Ill Newborns of Royal Dutch Medical Association. Infants' best interests in end-of-life care for newborns. Pediatrics. 2014;134(4). Available at: www.pediatrics.org/cgi/content/full/134/4/e1163
Hanson SS. Pediatric euthanasia and palliative care can work together [published online ahead of print February 8, 2015]. Am J Hosp Palliat Care. doi: 10.1177/1049909115570999
van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007;356(19):1957-1965
Verhagen E, Sauer PJ. The Groningen Protocol-euthanasia in severely ill newborns. N Engl J Med. 2005;352(10):959-962
Atkins E, Colville G, John M. A "biopsychosocial" model for recovery: a grounded theory study of families' journeys after a paediatric intensive care admission. Intensive Crit Care Nurs. 2012;28(3):133-140
October TW, Fisher KR, Feudtner C, Hinds PS. The parent perspective: "being a good parent" when making critical decisions in the PICU. Pediatr Crit Care Med. 2014;15(4):291-298
Phipps S, Long A, Willard VW, et al. Parents of children with cancer: at-risk or resilient? J Pediatr Psychol. 2015;40(9):914-925
Fleischman AR, Nolan K, Dubler NN, et al. Caring for gravely ill children. Pediatrics. 1994;94(4 pt 1):433-439
Gillis J, Tobin B. How certain are you, doctor? Pediatr Crit Care Med. 2011;12(1):71-72
de Vos MA, Bos A P, Plötz FB, et al. Talking with parents about end-of-life decisions for their children. Pediatrics. 2015;135(2). Available at: www.pediatrics.org/cgi/content/full/135/2/e465
Sullivan J, Monagle P, Gillam L. What parents want from doctors in end-of-life decision-making for children. Arch Dis Child. 2014;99(3):216-220
McGraw SA, Truog RD, Solomon MZ, Cohen-Bearak A, Sellers DE, Meyer EC. "I was able to still be her mom"-parenting at end of life in the pediatric intensive care unit. Pediatr Crit Care Med. 2012;13(6):e350-e356
Feudtner C. A piece of mind. Love at the end of the beginning of life. JAMA. 2015;314(10):1001-1002
Needle JS. Home extubation by a pediatric critical care team: providing a compassionate death outside the pediatric intensive care unit. Pediatr Crit Care Med. 2010;11(3):401-403