By Marli Robertson, MBChB, FRACP Section Chief, Palliative Medicine Associate Clinical Professor Department of Paediatrics, Cummings School of Medicine University of Calgary.
Feature Article: Devictor DJ, Latour JM. (2011), Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Med. 2011 Nov;37(11):1881–7.
Other Feature Articles Referenced: Isaacs D. (2016), Hope and despair. J Paediatr Child Health. 2016 Oct;52(10):917–8.
Lee BKY, Apkon D, Wolfe J, Marcus KJ. (2017), Palliative radiation therapy for pediatric patients: Parental perceptions. International Journal of Radiation Oncology Biology Physics. 2017; Conference:59th Annual Meeting of the American Society for Radiation Oncology, ASTRO 2017. United States. 99 (2 Supplement 1) (pp E495).
Paris JJ, Pai V, Cummings BM, Batten J, Benitz WE. (2017), Approaches to end-of-life discussions with parents of a profoundly compromised newborn. Journal of Perinatology. 1078;37(10):1078–81.
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Several of the articles and commentaries in this month’s citation list are directly or indirectly related to the themes of decision-making for a child with a life-limiting illness and/or communication in serious illness. It was particularly interesting to consider what seem to be significant differences in approach and practice between North American and European pediatric/neonatal intensive care environments around decisions to discontinue or not escalate life-sustaining care.
My chosen feature article by the European Study Group was published in 2011, so there may have been further evolution in practices over the past nine years. This article reported a multicenter descriptive epidemiologic study which involved a survey of European pediatric intensive care units, (PICUs) for the year 2008. A call was sent to 135 PICUs with 48 PICUs providing responses. The authors compared Northern /Western (N/W) European countries with Eastern/Central (E/C) European countries, but because France (n=20) represented more than 50 % of the N/W group, French data was considered separately. Data from this study were compared with data from the Eurydice I Study which used the same survey in 2001. The study confirmed that the decision to limit/discontinue life support is commonly made in European PICUs (40.6 % of children who died). However there were differences between groups in this study (N/W excluding France 60 .0 %, France 38.2 % and E/C 0 %). This pattern was also found in Eurydice l (Northern and Southern Europe were compared).
The decision to limit/discontinue life support for 40.6 % of children who died is very similar to the percentage that has been described in North America (Feudtner C, Christakis DA, Zimmerman FJ, et.al. Pediatrics, 2002;109: 887-893). However the decision-making process described in this paper seems to differ greatly from that reported from North American PICUs and NICUs (Neonatal Intensive Care Units) and from my own experience. In this study the trend was towards a standardized end-of life decision-making process throughout European PICUs. This was described in the following way: “The decision to forgo life-sustaining treatment is made by doctors during a specific meeting. The reason for making this decision is often the poor neurological prognosis of the child. Generally the parents are informed of this meeting taking place and do not participate directly in the decision-making process. They agree with the conclusion in the majority of cases.”
In most North American PICUs the recommended approach is “Shared Decision-making” where medical teams and parents discuss options and arrive at a conclusion where both parties bear the weight of making a medical decision. Forty percent of parents surveyed in one US PICU had a preference for shared decision-making, but as many parents (41%) preferred Self /Mostly Self. Less than 20% of parents surveyed had a preference for Doctor/Mostly Doctor making the decision (Madrigal VN, Carroll KW, Hexem KR et.al. Crit Care Med 2012; 40: 2876-2882). It is interesting to speculate on whether parental preferences around decision-making were consistent with the practices described.
The North American phenomenon of self/parental “autonomy” in decision-making is discussed in the commentary from the Journal of Perinatology. It seems that in American bioethics as well as in medical practice that autonomy trumps, and the shift from paternalism has moved past shared decision-making to self (or proxy) determination; as the authors put it, “the approach today in most American hospitals involves presenting the parents with clinical details, discussing the prognosis and asking the parents what they want done.” In all, this commentary is a rich, well-referenced discussion of the cultural/historical context for this shift as well as how the response to “autonomy” has become determinative in decisions on end-of-life care. The commentary finishes with a section which references a number of approaches to physician and parent communication in end-of-life care discussions and briefly outlines some key issues in communicating with grieving families, as well as some approaches to having these conversations.
Two other references in this month’s citation list also speak to the complexities of communication supporting parental decision-making for children who will die. In the study about parental perceptions of palliative radiation therapy for pediatric patients in the International Journal Of Radiation Oncology Biology Physics, the authors report that a large proportion of parents perceived palliative radiation therapy to play a curative role in their child’s malignancy despite having been informed initially that the treatment was palliative. This probably reflects that even with full disclosure of prognosis and informed consent parents may still retain their major hope for a cure. In the editorial titled “Hope and Despair” Professor Isaacs states that some parents may want to prolong their child’s life at all cost even if they know the child will almost certainly die. He emphasizes that physicians need to advocate strongly for the child rather than colluding with the parents because they want to respect the parents’ right to decide and they do not want to take away hope. He emphasizes that hope is not static but evolves, and a goal for the physician is to help parents redirect hopes towards attainable goals as circumstances change.