Abstract：Objective To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to describe feedback from these parents after death of their child. Methods A retrospective review was conducted of health records of neonates who had died receiving palliative care over a period of 5 years at a tertiary neonatal centre. Specific inclusion criteria were determined in advance that identified care given by a dedicated group of caregivers. Results Thirty infants met eligibility criteria. After excluding one outlier an average of 4 discussions occurred with families before an end of life decision was arrived at. Switching from aggressive care to comfort care was a more common decision-making route than having palliative care from the outset. Ninety per cent of families indicated satisfaction with the decision making process at follow-up and more than half of them returned later to meet with the NICU team. Some concerns were expressed about the availability of neonatologists at weekends. Conclusions A compassionate and humane approach to the family with honesty and empathy creates a positive environment for decision-making. An available, experienced team willing to engage families repeatedly is beneficial. Initiating intensive care with subsequent palliative care is acceptable to families and caregivers.
Koravangattu Sankaran,Erin Hedin,Heather Hodgson-Viden. Neonatal end of life care in a tertiary care centre in Canada: a brief report[J]. CJCP, 2016, 18(5): 379-385.
Warrick C, Perera L, Murdoch E, et al. Guidance for withdrawal and withholding of intensive care as part of neonatal end-of-life care[J]. Br Med Bull, 2011, 98: 99-113.
[2]
Fowler R, Hammer M. End-of-life care in Canada[J]. Clin Invest Med, 2013, 36(3): E127-E132.
[3]
Meert K, Thurston CS, Sarnaik AP. End-of-life decision-making and satisfaction with care: parental perspectives[J]. Pediatr Crit Care Med, 2000, 1(2): 179-185.
[4]
Stenekes SJ, Ens CD, Harlos M, et al. A descriptive study evaluating perinatal healthcare providers' perspectives of palliative programming in 3 Canadian institutions [J]. J Perinat Neonatal Nurs, 2014, 28(4): 280-289.
[5]
Verhagen AA, Dorscheidt JH, Engles B, et al. End of life decisions in Dutch Neonatal Intensive Care Units[J]. Arch Pediatr Adolesc Med, 2009, 163(10): 895-901.
[6]
Whitelaw A. Death as an option in neonatal intensive care[J]. Lancet, 1986, 2(8502): 328-331.
[7]
Wilkinson D. Prognosis based guidelines for treatment limitation decision in newborn infants[J]. BMJ Support Palliat Care, 2013, 3(2): 276.
[8]
Cook LA, Watchko JF. Decision making for critically ill neonate near the end of life[J]. J Perinatol, 1996, 16(2 Pt 1): 133-136.
[9]
Singh J, Lantos J, Meadow W. End-of-life after birth: death and dying in a neonatal intensive care unit[J]. Pediatrics, 2004, 114(6): 1620-1626.
[10]
El Sayed MF, Chan M, McAllister M, et al. End-of-life care in Toronto neonatal intensive care units: challenges for physician trainees[J]. Arch Dis Child Fetal Neonatal Ed, 2013, 98(6): F528-F533.
[11]
Einaudi MA, Le Coz P, Malzac P, et al. Parental experience following perinatal death: exploring the issues to make progress[J]. Eur J Obstet Gynecol Reprod Biol, 2010, 151(2): 143-148.
[12]
Cortezzo DE, Sanders MR, Brownell E, et al. Neonatologists' perspectives of palliative and end-of-life care in neonatal intensive care units[J]. J Perinatol, 2013, 33(9): 731-735.
[13]
Boss RD, Hutton N, Donohue PK, et al. Neonatologist training to guide family decision making for critically ill infants[J]. Arch Pediatr Adolesc Med, 2009, 163(9): 783-788.
[14]
Mendes JC, Justo da Silva L. Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal[J]. Adv Neonatal Care, 2013, 13(6): 408-414.
[15]
Dupont-Thibodeau A, Barrington KJ, Farlow B, et al. End of life decisions for extremely low-gestational age infants: why simple rules for complicated decisions should be avoided[J]. Semin Perinatol, 2014, 38 (1): 31-37.
[16]
Cuttini M, Casotto V, de Vonderweid U, et al. EURONIC Study Group. Neonatal end-of-life decisions and bioethical perspectives[J]. Early Hum Dev, 2009, 85(10 Suppl): S21-S25.
[17]
Kon AA. The shared decision-making continuum[J]. JAMA, 2010, 304(8): 903-904.
[18]
Pierucci RL, Kirby RS, Leuthner SR. End-of-life care in neonates and infants: experience and effects of palliative care consultation services[J]. Pediatrics, 2011, 108(3): 653-660.
[19]
Janvier AA, Barrington KJ, Farlow B. Communication with parents concerning withholding or withdrawing of lifesustaining interventions in neonatology[J]. Semin Perinatol, 2014, 38(1): 38-46.
[20]
Moseley KL, Church A, Hempel B, et al. End of life choices for African-American and white infants in a neonatal intensive care unit: a pilot study[J]. J Nat Med Assoc, 2004, 96(7): 933-937.
[21]
Moro T, Kavanaugh K, Okuno-Jones S, et al. Neonatal end of life care: practices, decision-making process and dying process[J]. J Perinatal Neonatal Nurs, 2006, 20(3): 263-273.
[22]
Yu VY. Ethical decision-making in newborn infants[J]. Acta Med Port, 1997, 10(2-3) : 197-204.
[23]
American Academy of Paediatrics. Clinical practice guidelines for quality palliative care (3rd ed)[EB/OL]. [April, 2014]. www. pediatrics.org/cgi/doi/ 10.1542/peds.2014-0046.
