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How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities

290 I.H. Zaal-Schuller

290 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 to make decisions together with the parents, in some situations, they had chosen to make the final decision alone. This especially happened in cases of disagreement in which they wished to protect the child from further suffering. Other physicians held the opposite view; they thought that certain end-of-life decisions should be solely made by physicians. Three physicians explained that the type of decision deemed who the final decision maker should be; physicians should be the final decision makers in decisions regarding resuscitation or mechanical ventilation; however, parents should be the final decision maker concerning decisions about proceeding with a life-saving surgical procedure or starting artificial nutrition and hydration. 3.2.7. Overall similarities and differences between parentsand physiciansexperiences In comparing the experiences of parents and physicians, both similarities as differences become apparent. The differences and similarities are listed in Table 5 according to the six main themes listed in Table 4. 4. Discussion In this retrospective, qualitative study, we investigated the experiences of parents and physicians during the end-oflife decision-making (EoLDM) process of the same child with profound intellectual and multiple disabilities (PIMD). Both parents and physicians agreed that a long-lasting treatment relationship facilitated the EoLDM process. All of the parents had experienced serious illnesses of their child before. This made them anticipate their wishes for their child if another critically illness occurred again. Physicians were not sufficiently aware of this and underestimated the readiness of parents to discuss end-of-life decisions. In many cases, disagreements improved the decision-making process because alternative solutions were explored in-depth. Both parents and physicians considered parents to be the experts concerning the well-being of their child. Concerning the question of who should be the final decision maker, parents wished for their physician to support them in making the final decision. Children with PIMD frequently suffer from complex medical problems (Chaney & Eyman, 2000; Oeseburg et al., 2011; van Schrojenstein Lantman-de Valk et al., 1997), and parents have to face multiple healthcare encounters during the lifetime of their child (Avis & Reardon, 2008; Iversen, Graue, & Clare, 2009; Rallison & Raffin-Bouchal, 2013; Redley et al., 2013; Sleigh, 2005). In this study, all of the parents reported that they had negative healthcare encounters in the past. In previous studies of children who lacked decision-making capacity, many parents also reported having negative feelings about the medical encounters regarding their child. In these studies, they specifically named situations in which they received conflicting information, they had felt they were not heard, physicians seemed to lack knowledge of their child’s conditions and physicians initiated courses of treatment that resulted in seriously adverse consequences for their child’s health (Iversen et al., 2009; Rallison & Raffin-Bouchal, 2013; Redley et al., 2013; Sleigh, 2005). Overall, these encounters may well lead to a general feeling of distrust towards physicians. The implication of this finding for practice is that physicians should be more aware of this growing distrust of these parents towards physicians. In several studies, parents emphasized the importance of getting enough time during the EoLDM process (Friedman, 2006; Morrow, Quine, Loughlin, & Craig, 2008; Rapoport, Shaheed, Newman, Rugg, & Steele, 2013; Reilly, Huws, Hastings, & Vaughan, 2010; Sharman et al., 2005). The importance of time not only seemed to apply to children with PIMD but also to the EoLDM process of typically developed children (Carnevale et al., 2007; Curley & Meyer, 2003; Meert et al., 2000; Michelson et al., 2009). We found that, in almost all of the cases, the EoLDM process started after the child’s situation had acutely deteriorated. This finding implicates that there is a need to improve the timing of the EoLDM process; it should start earlier to avoid an EoLD when the child is critically ill and decisions consequently need to be made under time pressure. Concerning the provision of information, we found that parents considered the information provided by other parents who had already been through the EoLDM process to be especially helpful. This finding was also confirmed in former studies (Morrow et al., 2008; Rapoport et al., 2013; Tan, Docherty, Barfield, & Brandon, 2012; Xafis, Wilkinson, & Sullivan, 2015). The question then arises as to why parents find this information so helpful. One explanation could be that other parents inform them from a parents’ perspective and do not talk in medical jargon, which can be overwhelming and confusing to parents. Thus, the information becomes more accessible to them (Xafis et al., 2015). Concerning the provision of information to parents with a non-Dutch background, the physicians believed it was difficult for them to fully comprehend all of the information. Furthermore, these parents themselves explained that differences in culture and legislation between The Netherlands and their country of origin had been a factor that complicated the EoLDM process. The implication of this finding for practice is that the provision of information to parents with a non-Dutch background could be improved with culturally sensitive information; to ensure such information is understood, this should preferably be translated. Studies that have investigated disagreements that occurred during the EoLDM process for children gave different explanations about their nature, depending on which perspective had been investigated, i.e., the perspective of physicians or parents. Case reports that explored the nature of disagreements that occurred during the EoLDM process from the perspective of the physicians mostly reported disagreements in which parents wanted everything to be done to prolong the life of their child (Dalichoux, Bordet, & Javouhey, 2014; Jonas, 2007; Luce, 2015; Siegel, 2006). On the other hand, studies that explored the perspective of the parents emphasized that parents felt pressured by physicians to make a certain decision (Brotherton & Abbott, 2012; de Vos, Seeber et al., 2015; Guon, Wilfond, Farlow, Brazg, & Janvier, 2014; Sharman et al., 2005). These results seem to be inconsistent with other research that found that an important strategy for physicians to resolve conflicts was to give parents more time by delaying a decision (de Vos et al., 2011; de Vos, Bos et al., 2015). Several parents

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 291 in this study reported that an important reason for disagreements with their physicians was their feeling that these physicians regarded the life of their child as less valuable than the life of a typically developing child. This made parents feel that they had to advocate for their child during the EoLDM process. This finding is also described in other studies concerning EoLDM for children with PIMD (Guon et al., 2014; Morrow et al., 2008; October, Fisher, Feudtner, & Hinds 2014; Reilly et al., 2010; Sharman et al., 2005). An implication for practice is that physicians should put a great deal of effort into explaining to parents why they wish to discuss certain decisions. During these discussions, physicians should be alert to any feelings of distrust coming from the parents and should discuss these feelings openly. Furthermore, physicians should ensure parents that they are open to divergent opinions. The recognition of the variability of opinions and the different values they are based on can improve decision-making. It is important to mention that not all of the parents or physicians in our study found disagreements to be disturbing. It often challenged both parents and physicians to think of a compromise, such as starting a treatment for a limited course of time and deciding whether to continue, depending on the improvement of the child’s condition. Disagreements can therefore lead to better tailored solutions, instead of thinking that there is just one right decision to make (Wilkinson, Truog, & Savulescu, 2015). In previous studies of children who lacked the decision-making capability, parents also indicated that they considered themselves to be the experts on the well-being of their child (Avis & Reardon, 2008; Iversen et al., 2009; Rallison & Raffin- Bouchal, 2013). They felt this way because their child lacked communication skills, making it necessary for them to translate their child’s non-verbal signals for the physician. We also found that parents were convinced that they had a better understanding than physicians had about how their child felt and what he or she needed. Physicians agreed with parents on this matter. Another important issue addressed in our study was who should be the final decision maker for EoLD of PIMD children. Parents wished the physicians would support them as the final decision maker for their child. This finding is confirmed in some other studies (Meert et al., 2000; Sullivan et al., 2014). Remarkably, most participating physicians emphasized that they preferred a shared decision-making approach. Yet, in actual practice, they sometimes chose an informed approach, thereby letting parents make the final decision based on all of the information they had provided. The implication of this finding for practice is that during the EoLDM process, physicians should explain to parents what they actually mean by shared decision-making. Another implication is that physicians should check whether this way of decision-making aligns with the personal preferences of parents. This study has several limitations. First, recall bias is possible because the participants were asked to reflect on an EoLDM process that had occurred in the past. We also do not know how the fact that some children stayed alive after the EoLD was made, while others died, influenced the way parents in retrospect experienced the EoLDM process: parents could have a more positive view about the EoLDM process if their child was still alive. Second, because most of the interviews were performed with the mothers, probably because they are the primary caregivers, the fathers’ perspective is almost entirely lacking. Third, physicians were reluctant to speak about their disagreements with individual parents. This led to broad answers that made the comparison between the experiences of parents and physicians more difficult. Finally, this study describes experiences of parents and physicians during EoLDM in solely Dutch hospitals, which may limit the generalizability to experiences in other countries. However, in our opinion the experiences of parents and physicians during the EoLDM process were not so much affected by the specific Dutch context, but rather by the lack of decision-making capacity of the children and the complex health problems they encountered. We therefore think that our findings may be relevant for practices in other countries as well. The strength of this study is that both the parents and physicians involved in the care of a particular child were interviewed, which enabled us to directly compare their experiences during the EoLDM process. Further research is needed to investigate the experiences of parents and physicians during the EoLDM process for children with other chronic, complex conditions. Efforts should also be made to gain more knowledge about the factors that guided both parents and physicians during the EoLDM process of PIMD children. Furthermore, the findings of this research should be extended, especially by involving the parents of children with other ethnic backgrounds. Steps should be taken, in cooperation with support groups for parents with PIMD children, to develop further practical recommendations on how to improve the EoLDM process for this vulnerable patient group. Conflict of interest The authors have no conflicts of interest to disclose. Source of funding This study was part of a research project entitled “End-of-life decision-making for children with severe intellectual disabilities”. This project was funded by the Rehabilitation Fund (het Revalidatiefonds) (grant number R2011131); the Fund for Intellectual Disabilities (het Fonds Verstandelijk Gehandicapten) (grant number L2011057); and the Erasmus Medical Centre, Department of Intellectual Disability Medicine (grant number SC200007). These funds did not in any way influence the data acquisition, data analysis, or drafting of this manuscript.

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