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End-of-life decision-making for children with severe developmental disabilities

244 I.H. Zaal-Schuller

244 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 regarded the life of their child as less valuable than the life of a normally developing child. This strengthened the parents in their conviction to persuade the physician of the intrinsic value of their child’s life. Several parents underlined the importance of having sufficient time and obtaining sufficient information during the decision-making process (Friedman, 2006; Morrow et al., 2008; Rapoport et al., 2013; Reilly et al., 2010; Sharman et al., 2005). Information from other parents who had gone through the same process was considered especially helpful (Morrow et al., 2008; Rapoport et al., 2013). The importance of sufficient time and information during EoLDM applies not only to children with SDDs but to all children with critical illnesses (Carnevale et al., 2007; Curley & Meyer, 2003; Meert et al., 2000; Michelson et al., 2009). A recent review describing the experiences of parents of medically complex infants (including children with SDDs) also concluded that parents feel strongly guided by their wish to do what is best for their child and not for themselves. Other factors by which this group of parents felt guided were the seriousness of the child’s illness and the existence of additional treatment options, such as experimental therapies if the child did not respond to initial treatments (Allen, 2014). Studies about complex decision-making in children mostly focus on EoLDM, especially decisions to withhold or withdraw life-sustaining prolonging treatment. However, in children with SDDs, almost every decision is complex. As noted previously, children with SDDs frequently suffer from complex medical problems (Chaney & Eyman, 2000; Oeseburg et al., 2011; van Schrojenstein Lantman-de Valk et al., 1997). Parents are therefore continuously faced with challenging decisions (Tamburro, Shaffer, Hahnlen, Felker, & Ceneviva, 2011). Moreover, each decision has consequences for the next decision and also has significant influence on the child’s quality of life. Recent studies indicate that parents want to be involved in all aspects of care for their child: not only care in general but also specific care, such as the management of epilepsy and necessary surgery (Rallison & Raffin-Bouchal, 2013; Redley et al., 2013; Sheela, Latha, Liu, Lem, & Kaler, 2005; Vallenga, Grypdonck, Tan, Lendemeijer, & Boon, 2006). Moreover, most parents regard themselves as the experts in the care of their child (Avis & Reardon, 2008; Iversen, Graue, & Clare, 2009; Rallison & Raffin-Bouchal, 2013). At the same time, they have to face encounters with multiple health care professionals. They often experience these encounters as negative (Iversen et al., 2009; Rallison & Raffin-Bouchal, 2013; Redley et al., 2013; Sleigh, 2005). Parents indicated for example that they were not listened to (Sleigh, 2005); that they were excluded from the decision-making process regarding fundoplication (Fox et al., 2012), an operation predominantly carried out in children with SDDs; and that they did not receive sufficient information (Ager, Downs, Fyfe, & Leonard, 2009; Iversen et al., 2009; Marcovitch, 2005; Sleigh, 2005; Tandy, 2012). Several parents indicated that they would have especially appreciated information from other parents who had already been through this process (Iversen et al., 2009). The high prevalence of challenging decisions that parents of children with SDDs have to make over a long period of time, and the fact that all of these decisions have serious consequences for the child and his/her family, make these decisions ‘critical treatment decisions’. In our opinion, using this one uniform term will facilitate further research. This review has several limitations. First, the number of included studies is small, and all studies were performed in Anglo-Saxon countries. This limits the generalizability of the outcomes. Second, in several studies being included the sample size was small (Madrigal et al., 2012; Rapoport et al., 2013; Reilly et al., 2010; Sharman et al., 2005) and/or there was a potential sample bias resulting from the self-selection of participants (Guon et al., 2014; Madrigal et al., 2012; Reilly et al., 2010). Furthermore, the type of decision parents had encountered varied greatly. This makes it harder to compare the different viewpoints of parents in EoLDM. Finally, there was a considerable variation in how much time had passed between the decision-making and the data collection phase. We do not know whether this may have affected the parents’ evaluation. We are well aware that because of these limitations, the outcomes that we describe should be interpreted with caution and require further research among larger groups of parents of children with SDDs making different types of critical treatment decisions. The strength of this review is that it provides a comprehensive overview of the literature about the role of parents in EoLDM in children with SDDs. An interesting theme for further research is the question what parents and physicians both mean when they use the concept ‘the child’s best interest’. A second interesting theme is the influence of cultural, religious and socio-economic factors on parental decision-making. This requires the inclusion of other, preferably non-Western, countries. 5. Conclusion Although the experienced involvement in EoLDM of parents of children with SDDs varied widely, parents were largely in agreement about their wish to actively share in the decision-making process. Compared with parents of normally developing children, the presence of an SDD does not seem to make a substantial difference in either parents’ preferences regarding EoLDM or the factors by which they feel guided in their decision-making. Doing what is best for their child, seeing their child suffer, and their child’s perceived will to survive were the three most important guiding factors mentioned by parents. Parents often felt that the information provided by the physician was not sufficient, and they underlined their desire to speak with other parents who had gone through the same process. Many parents reported that they felt that they had to advocate for their child’s interests. Parents of children with SDDs face very different types of decisions, ranging from surgery to the management of epilepsy to decisions to withhold life-prolonging treatment, including artificial nutrition and hydration. Parents sometimes foresee these decisions but may also be taken by surprise. We suggest the term critical treatment decisions as the overall term for the

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 245 wide array of decisions that parents have to make for their child over time—decisions that almost always have important implications for the child’s quantity and quality of life. Funding sources This study is part of a research project entitled ‘‘End-of-life decision-making in children with severe intellectual disabilities’’. This project is funded by the Rehabilitation Fund: R2011131 (het Revalidatiefonds), the Fund for Intellectual Disabilities: L2011057 (het Fonds Verstandelijk Gehandicapten) and Erasmus Medical Centre, Department of Intellectual Disability Medicine: SC200007. These funds did not in any way influence the data acquisition, data analysis, or drafting of this manuscript. Financial disclosure The authors indicate that they have no financial relationships relevant to this article to disclose. Conflict of interest statement The authors have no conflicts of interest to disclose. 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