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

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242 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 One study described the preferences of parents in the decision-making process regarding a gastrostomy placement (Brotherton & Abbott, 2012) and another regarding withholding artificial nutrition and hydration (Rapoport et al., 2013). In the first study, most mothers who had been allowed to make the final decision evaluated this as very positive. Several mothers underlined that this leading role had enabled them to make a true child-centred decision. Mothers who had not had any say in the decision-making process described feelings of resentment and guilt, even if considerable time had elapsed since the gastrostomy placement (Brotherton & Abbott, 2012). In the second study, 11 bereaved parents were interviewed about their experiences regarding the decision to withhold artificial nutrition and hydration. All parents stated that this decision should only be considered when they were ready, i.e. when they viewed their child’s quality of life as very poor. Parents highly appreciated it when the option to withhold artificial nutrition and hydration was discussed with them in a sensitive, non-judgemental and supportive way. They also found it helpful when professionals shared their knowledge and past experiences. Finally, parents greatly appreciated the information that withholding artificial nutrition and hydration would not lead to an uncomfortable dying process. All parents included in this study believed the decision was theirs alone to make (Rapoport et al., 2013). In a fourth study, parents did not clearly specify their preferred way to be involved. However, this study described the different decision-making styles parents had, with some parents relying solely on information and others on values and feelings (Sharman et al., 2005). 3.3. Guiding factors in parental decision-making In making an EoLD for their child, parents felt guided and motivated by a combination of factors, with as most important factors: their assessment of their child’s suffering; their assessment of his or her quality of life; their wish to do what was best for their child; and their urge to advocate for their child’s interests. One study investigated whether the specific medical condition of the child, such as an SDD, was an important factor for parents in the EoLDM for their child. However, parents in this study described that putting the child’s needs first, advocating for their child’s interests and focusing on their child’s quality of life were the most important factors in the decision-making, regardless of their child’s diagnosis or the presence of a chronic condition (October et al., 2014). The question by which factors parents felt guided in their EoLDM was investigated in all studies except in one (Madrigal et al., 2012). The child’s perceived poor quality of life (Rapoport et al., 2013) and doing what was best for the child (Brotherton & Abbott, 2012; Sharman et al., 2005) appeared to be the most important guiding factors in EoLDM in three studies. In defining quality of life parents concretely named the child’s ability to interact meaningfully with his/her environment and the ability to enjoy things (Rapoport et al., 2013). According to two other studies, the parents’ personal observations of their child’s suffering and pain weighed heavily in their wish to withdraw life-prolonging treatment (Rapoport et al., 2013; Sharman et al., 2005). Parents also felt guided by the will they perceived in their child to survive. They based this conviction on their observations of the child’s behaviour, his or her body language and eye contact (Sharman et al., 2005). Parents of children with trisomy 13 and 18 especially weighed the child’s anomalies, such as brain and cardiac defects, in their wish to withhold life-prolonging treatment (Guon et al., 2014). In the two studies regarding the decision of a gastrostomy placement, parents reported different considerations. Extreme feeding difficulties appeared to be an important reason for the parents who agreed with this placement (Morrow et al., 2008). By contrast, the loss of everyday mothering activities was an important reason for other parents to not want a gastrostomy placement (Brotherton & Abbott, 2012). Moreover, many mothers regarded the placement of a gastrostomy as a personal failure to adequately feed their child (Brotherton & Abbott, 2012; Morrow et al., 2008). The side effects of artificial feeding, such as pain, nausea, and vomiting, contributed to the decision to withhold artificial nutrition and hydration and in all cases resulted in the child’s death (Rapoport et al., 2013). Parents often felt they had to advocate for their child’s interests (Guon et al., 2014; Morrow et al., 2008; October et al., 2014; Reilly et al., 2010; Sharman et al., 2005). They did this by explaining to the professionals that a decision had to be based on the needs of their child at that point in time and not on the fact that their child was disabled (Morrow et al., 2008). If parents could still experience their child’s life as positive and enriching, regardless of his/her life expectancy, they strongly favoured the continuation of life-prolonging measures (Guon et al., 2014; Sharman et al., 2005). The role of religion was investigated in two studies. In both studies, parents indicated that religious beliefs had not been a guiding factor in their decision-making (Guon et al., 2014; Sharman et al., 2005). However, according to one study, several parents felt strengthened by their belief in God. This helped them to better cope with the painful decision-making process. Some of these parents also felt that only God had the final decision-making authority (Sharman et al., 2005). Additional guiding factors in EoLDM that were mentioned in various studies were: the opinion of the other parent (Rapoport et al., 2013; Reilly et al., 2010) and previous experiences with EoLDM for a loved one (Sharman et al., 2005). One mother stated that the financial burden of having to care for a severely disabled child had convinced her to agree to withhold life-prolonging treatment (Sharman et al., 2005). Most parents were well aware that they were highly dependent on the information provided by the physicians. One study showed that the provision of written explanatory information about resuscitation in a non-acute setting led to a significant increase in requests to withhold this treatment (Friedman, 2006). Five studies indicated that parents felt that the information provided by the physician had been insufficient because, for example, they had not been informed about other treatment options (Friedman, 2006; Guon et al., 2014; Morrow et al., 2008;
I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 243 Rapoport et al., 2013; Reilly et al., 2010; Sharman et al., 2005). This had made their decision-making more difficult (Reilly et al., 2010). In two studies, parents stressed the importance of how information was given (October et al., 2014; Rapoport et al., 2013) and the importance of open communication between parents and the medical team (October et al., 2014). Parents sought information from various sources when making a decision for their child (Guon et al., 2014; Sharman et al., 2005). Conflicting information obtained from the physician and from the Internet could lead to mistrust of, conflict with and distress regarding the physician (Guon et al., 2014). Two studies mentioned the desire of parents to speak with other parents who had gone through the same process (Morrow et al., 2008; Rapoport et al., 2013). Time was also an important factor for parents in EoLDM (Friedman, 2006; Rapoport et al., 2013; Reilly et al., 2010; Sharman et al., 2005). Lack of time made decision-making more difficult (Reilly et al., 2010) and could make parents feel pressured into making a decision (Sharman et al., 2005). Sufficient time was appreciated by parents because it gave them the opportunity to gradually come to terms with the fact that withholding treatment was in their child’s best interest (Rapoport et al., 2013). 4. Discussion This review investigated the EoLDM experiences of parents of children with SDDs. The main outcome is that the degree of parental involvement within and across the studies being included varied widely. A comparison between these findings and research carried out in children in PICUs (which is not exclusively limited to children with SDDs) shows some striking similarities. Two studies that explored the views of bereaved parents regarding the physicians’ roles in EoLDM also reported strongly varying roles, ranging from physicians making the decision alone to physicians only giving advice and leaving the final decision to the parents (Meert, Thurston, & Sarnaik, 2000; Sullivan, Monagle, & Gillam, 2014). A third study which investigated parents’ experiences in PICUs in both France and Canada reported a similar broad variation in how parents had been involved (Carnevale et al., 2007). By contrast, the majority of parents who had to decide about extracorporeal membrane oxygenation felt that there remained no choice but to consent to the proposed line of treatment (Curley & Meyer, 2003). The majority of bereaved parents whose children had died after withdrawal of life support also felt that they had had little to no control over the situation during their child’s final days (Meyer, Burns, Griffith, & Truog, 2002). None of the studies gave a conclusive explanation about this difference in parental involvement. Recent studies have shown that physicians working within the same hospital and sometimes within the same intensive care unit may involve parents quite differently in the decision-making process (de Vos et al., 2011; McHaffie, Lyon, & Hume, 2001; Meert et al., 2000; Provoost et al., 2006). It is still unclear whether this diversity reflects the different personal styles of individual physicians, or the adjustment of physicians to the preferences and needs of individual parents (deVosetal.,2011;McHaffieetal.,2001; Meert et al., 2000). Which degree of involvement do parents prefer? The study with the largest sample of parents indicated that the majority of parents favoured shared decision-making, even if this involved a burdensome EoLD (Madrigal et al., 2012). This outcome contrasts with the outcome of a study concerning gastrostomy placement, in which all parents preferred to lead the decisionmaking process (Brotherton & Abbott, 2012). In the decision to withhold artificial hydration and nutrition, they even indicated that they wanted to be the sole decision-maker (Rapoport et al., 2013). This preference may be explained by the fact that parents consider feeding their child to be one of the basic elements of parenting. Overall, parents differ in their personal preferences as to how they want to be involved. Yet, they very seldom prefer an approach in which the physician is the sole decision-maker. In a recently published review about EoLDM in neonatal and paediatric intensive care units, most parents indicated that they preferred a shared decision-making approach. For some parents this implied that they wanted to make the final decision together with their physician. For other parents it implied that they wished to be well informed and to be asked for their approval. Especially if the prognosis of their child was uncertain, most parents did not want to make the final decision (de Vos, 2015). In the studies included in this review, parents did not indicate that the uncertainty of their child’s prognosis influenced their preferences regarding their involvement. It may be hypothesized that these parents still felt confident that they knew best what decisions were in their child’s best interests. This hypothesis can be strengthened by studies carried out in children in PICUs. In these studies, parents also indicate that in EoLDM they felt guided by a sense of their child’s condition and needs (Carnevale et al., 2007), their own intuition (Michelson et al., 2009), or the assumed wishes of their child (Meyer et al., 2002). Our review indicates that parents feel guided by two main factors: their desire to do what is best for their child and their perception of their child’s quality of life (Brotherton & Abbott, 2012; Rapoport et al., 2013; Sharman et al., 2005). It was not always clear what parents actually meant by ‘doing the best for their child’. Further research is needed to better explore this concept (Allen, 2014). Research investigating EoLDM in all children admitted to PICUs also concluded that quality of life is an important guiding factor for parents (Meyer et al., 2002; Michelson et al., 2009). Many parents also felt guided by the presence of pain and suffering. In their opinion, both factors highly diminished their child’s quality of life (Curley & Meyer, 2003; Meert et al., 2000; Meyer et al., 2002; Michelson et al., 2009). Parents often reported that they felt the urge to advocate for their child’s interests (Guon et al., 2014; Morrow et al., 2008; October et al., 2014; Reilly et al., 2010; Sharman et al., 2005). Some parents added that it seemed as though physicians
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End-of-life decision-making for children with severe developmental disabilities

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