End-of-life Decisions for Children in a Thai Pediatric Intensive Care Unit: A Qualitative Descriptive Study
Keywords:
End-of-life decision, Children, Pediatric intensive careunit, qualitative descriptive, ThailandAbstract
The issue of healthcare decisions for terminally ill children is complex and presents a wide range of challenges and difficulties. This qualitative descriptive study was designed to investigate end-of-lifedecisions, based on health professionals’ perspectives, for children admitted to the pediatric intensive care unit. The participants comprised
two physicians and 17 nurses, sampled purposively. Data collection was performed from November 2018 to June 2019, adopting in-depth interviews. Data analysis was carried out using the process proposed by Creswell.
The main findings revealed that parents ultimately took responsibility for end-of-life decisions related to their terminally ill child. There were four main categories describing end-of-life decisions for a terminally ill child: Making definite end-of-life diagnosis; Communicating to assure parental understanding; Allowing parents to choose end-of-life
options; and Initiating end-of-life care. The findings of this study provide an insight into parental decision for their terminally ill child during this critical stage. Such essential knowledge is useful as a foundation to improve end-of-life decisions in the pediatric intensive care unit, practically and effectively for nurses and other health professionals.
References
Siddiqui N, Ashraf Z, Jurair H, Haque A. Mortality patterns among critically ill children in a pediatric intensive care unit of a developing country. Indian J. of Crit. Care Medicine. 2015;19(3):147-50.
Meert KL, Keele L, Morrison W, Berg RA, Dalton H, Newth CJL, et al. End-of-life practices among tertiary care PICUs in the United States: a multicenter study. Pediatric Crit. Care Med. 2015;16(7):e231-8.
Burns JP, Sellers DE, Meyer EC, Lewis-Newby M, Truog RD. Epidemiology of death in the PICU at five U.S. Teaching Hospitals. Crit. Care Med.. 2014;42(9):2101-8.
Maharaj Nakorn Chiang Mai Hospital. Statistical report 2017. Chiang Mai: Faculty of Medicine, Chiang Mai University; 2018.
Polikoff LA, McCabe ME. End-of-life care in the pediatric ICU. Current Opinion in Peds. 2013;25(3):285-9.
de Vos MA, van der Heide A, Maurice-Stam H, Brouwer OF, Plötz FB, Schouten-van Meeteren AYN, et al. The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Peds. 2011;127(4):1004-12.
Sullivan J, Gillam L, Monagle P. Parents and end-of-life decision-making for their child: roles and responsibilities. BMJ Supportive & Pall. Care. 2015;5(3):240-8.
The Thailand Civil and Commercial Code. Royal Thai Government Gazette 1992. Available from: http://web.
krisdika.go.th/data/law/law4/%BB03/%BB03-20-9999-update.pdf.
Bayrakci B, KesİCİ S, KendİRlİ T, Kalkan G, Sari A, Tokmak N, et al. Evaluation report of pediatric intensive are
units in Turkey. Turkish J. of Med. Sci. 2014;44(6):1073-86.
Abib El Halal GMC, Piva JP, Lago PM, El Halal MGS, Cabral FC, Nilson C, et al. Parents› perspectives on the deaths of their children in two Brazilian paediatric intensive care units. Intern. J. of Pall. Nurs. 2013;19(10):495-502.
Devictor D, Latour JM. Forgoing life support: how the decision is made in European pediatric intensive care units. Inten. Care Med. 2011;37(11):1881-7.
Carnevale FA, Benedetti M, Bonaldi A, Bravi E, Trabucco G, Biban P. Understanding the private worlds of physicians, nurses, and parents: a study of life-sustaining treatment decisions in Italian paediatric critical care. J Child Health Care. 2011;15(4):334-49.
Kahveci R, Ayhan D, Döner P, Cihan FG, Koç EM, Döner P, et al. Shared decision-making in pediatric intensive care units: a qualitative study with physicians, nurses and parents. Indian J. of Peds. 2014;81(12):1287-92.
Piva J, Lago P, Othero J, Garcia PC, Fiori R, Fiori H, et al. Evaluating end of life practices in ten Brazilian paediatric and adult intensive care units. J of Med. Ethics. 2010; 36(6):344-8.
Xafis V, Wilkinson D, Sullivan J. What information do parents need when facing end-of-life decisions for their
child? a meta-synthesis of parental feedback. BMC Pall. Care. 2015;14(19):1-11.
Moore P, Kerridge I, Gillis J, Jacobe S, Isaacs D. Withdrawal and limitation of life-sustaining treatments in a paediatric intensive care unit and review of the literature. J. of Paeds. & Child Health. 2008;44(7-8):404-8.
Kennedy C, Brooks-Young P, Brunton Gray C, Larkin P, Connolly M, Wilde-Larsson B, et al. Diagnosing dying: an integrative literature review. BMJ Supportive & Pall. Care. 2014;4(3):263–70.
Council of Europe. Guide on the decision-making process regarding medical treatment in end-of-life situations. n.p.: Council of Europe; 2014.
Ministry of Health. Guidelines for end-of-life care and decision-making 2019. Available from: http://www1.health. nsw.gov.au/pds/ActivePDSDocuments/GL2005_057.pdf.
de Vos MA, Bos AP, Plötz FB, van Heerde M, de Graaff BM, Tates K, et al. Talking with parents about end-of-life
decisions for their children. Peds. 2015;135(2):465-76.
Milintangkul U. National Policy on Palliative Care in Thailand 2015. Available from: https://en.nationalhealth.or.th/ wp-content/uploads/2017/11/NationalPolicyonPCare 2015_09_17-1.pdf.
Lambert VA, Lambert CE. Qualitative descriptive research: an acceptable design. Pacific Rim Intern. J. of Nurs. Research. 2012;16(4):255-6.
Creswell Jw, Poth CN. Qualitative inquiry research design: choosing among five approaches 4th ed. Thousand Oaks: SAGE; 2018.
Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J. Making decisions to limit treatment in life-limiting and
life-threatening conditions in children: a framework for practice. Archives of Disease in Childhood. 2015;100:1-23.
Peng N-H, Chen C-H, Liu H-L, Lee H-Y. To explore the conditions of dying infants in NICU in Taiwan. J. of Crit. Care. 2012;27(1):102.e7-.e13.
Sarnaik AP, Meert KL. End-of-life issues in paediatric intensive care. Paeds. and Child Health. 2007;17(3):104-7.
Bateman LB, Tofil NM, White ML, Dure LS, Clair JM, Needham BL. Physician communication in pediatric
end-of-life care. Amer. J. of Hospice & Pall. Med. 2016; 33(10):935-41.
Hendricks-Ferguson VL, Haase JE. Parent perspectives of receiving early information about palliative and end-oflife care options rrom their child’s pediatric providers. Cancer Nurs. 2019;42(4):E22-E30.
Yorke D. Parents› memories of having a child die in the PICU. The World of Crit. Care Nurs. 2011;8(3):97-102.
Caeymaex L, Speranza M, Vasilescu C, Danan C, Bourrat M, Garel M, et al. Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU. PLoS ONE. 2011;6(12):1-7.
Liu S, Lin H, Lu FL, Lee T. Taiwanese parents› experience of making a “do not resuscitate” decision for their child in pediatric intensive care unit. Asian Nurs. Res. 2014;8(1):29-35.
Cheng S-Y, Suh S-Y, Morita T, Oyama Y, Chiu T-Y, Koh SJ, et al. A Cross-cultural study on behaviors when death is approaching in East Asian Countries: what are the physician-perceived common beliefs and practices? Medicine. 2015;94(39):1-6.
McDonald C, McCallin A. Interprofessional collaboration in palliative nursing: what is the patient-family role?
Intern. J. of Pall. Nurs. 2010;16(6):285-8.
Edwards A, Pang N, Shiu V, Chan C. The understanding of spirituality and the potential role of spiritual care in end-of-lifem and palliative care: a meta-study of qualitative research. Pall. Med. 2010;24(8):753-70.
Choudry M, B AL, Warburton KG. An overview of the spiritual importances of end-of-life care among the five major faiths of the United Kingdom. Clin. Med. 2018;18(1):23-32.
Pilaikiat R. Spiritual care for dying people among Thai Buddhist nurses : an ethnographic study. Thailand: Chiang Mai University; 2016.
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