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

288 I.H. Zaal-Schuller

288 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 family and friends with a medical background for help. Many parents indicated that conversations with parents who had been through the same process would have been both supportive and informative because these parents would have been capable of understanding their feelings and the complexity of their considerations. 3.2.3.2. Physicians. Physicians expressed that they put a great deal of effort into giving clear information and advice to parents, but that effort was complicated by an uncertain prognosis and unforeseen complications that made it difficult to completely inform parents with current information. Almost half of the physicians thought that parents had difficulties fully comprehending all of the information. The physicians argued that this was not caused by a lack of information but by the fact that parents in general lacked sufficient medical background knowledge to put the information in the right context. For some parents, especially those with a non-Dutch background, physicians thought it had been difficult to fully comprehend concepts such as ‘mechanical ventilation’ or ‘admission into an intensive care unit’, despite their repeated explanations. In contrast, other physicians thought that these parents were particularly capable of understanding all of the information because of their knowledge of the medical conditions and their experiences with treatments during previous critical illnesses of their child. Physician: So I tell them it’s a very serious condition and that it’s a progressive condition. And if the parents ask me, “How will it go?” In those cases, I answer, “How was your child’s condition one month ago? And how is it now?” I say, “You can draw a line though that.” 3.2.4. Reasons for disagreement 3.2.4.1. Parents. Eight parents recalled one or more disagreements with a physician during the EoLDM process. Not all of the parents believed that these disagreements were disturbing; it made them reconsider their opinion about which choice to make. The parents mentioned that disturbing disagreements arose especially after an acute deterioration of their child’s condition because decisions had to be made under time pressure and often without their regular physician. In those cases, the parents felt that they were not heard and that the physicians regarded the life of their child as less valuable than the life of a typically developed child. This strengthened their feeling that they had to advocate for their child. Five parents recalled disturbing disagreements with their regular physician. Three of them were parents of children with both PIMD and a short life expectancy, and they preferred to continue maximum medical interventions, including invasive treatments, before starting comfort care. This caused disagreements with their physicians who felt that these treatments were futile. In contrast, two other parents thought that their children would be better off dead even when they were in a stable condition. These parents felt that their children were not able to enjoy life anymore and expressed that their children were very often extremely uncomfortable without a recognizable cause, despite repeated diagnostic tests. One couple of parents with a Moroccan background explained that the difference in culture and legislation between Morocco and The Netherlands had been a complicating factor that caused disagreements with their child’s physicians. Parent: My religion plays a role, and that’s the reason I say: “God made her like that, and we don’t know. . .” You don’t know. I don’t know. Nobody knows when she will die. Right now she is 5 years old. When she was born, the physicians told us: “There is a very little chance that she will survive.” Well, I told them, “You are the physicians, but my religion says something else.” 3.2.4.2. Physicians. In the interviews, physicians appeared to be more reluctant than parents to talk about disagreements. They preferred to speak about the disagreements they had in the past with parents in general. Physicians emphasized that not all of the disagreements had been disturbing. Disagreements also challenged them to think about alternatives that would be more suitable for the specific situation of the child. Physicians also emphasized that differences in ethnic, religious and/or linguistic backgrounds between parents and themselves could be a factor that complicates EoLDM. Two physicians expressed that disturbing disagreements had arisen because parents still wished for ‘everything to be done’; this also included treatments that the physician considered to be futile at that point in time. In another case, a couple of parents wanted a treatment to be forgone, while the physician still anticipated a realistic chance of improvement. 3.2.5. Contributions to decision-making 3.2.5.1. Parents. Nearly all of the parents emphasized that they felt that they were the experts on their child. Being the expert meant that parents knew a lot about the medical conditions of their child. However, more importantly, being the expert meant that parents could feel when their child was deteriorating before the physicians were aware. Parents were well aware of their role. Additionally, they felt the need to be the ‘translator’ of their child for physicians, e.g., explaining how their child was feeling and whether their child was in pain. Parents felt that their role as the expert was recognized by the regular physician, although it could take some time to gain the physician’s trust. As the expert, parents felt that physicians listened very carefully to them. Some parents added that their role allowed them to influence the decision-making process to a far-reaching extent. 3.2.5.2. Physicians. Half of the physicians emphasized that they regarded the parents as the expert of their child because they needed the parents to be a ‘translator’ that told them how their child was doing.

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 289 In some cases, parents made physicians realize that their child was ‘different’ and that alternative solutions would work better than the regular ones. Some physicians emphasized that they allowed parents of children with PIMD to influence the decision-making process to a far greater extent than parents of typically developing children. Physician: You know, it’s a severely disabled girl, but I don’t know by looking at her if she is in pain or uncomfortable, and her mother is able to read her signals very well. And for me, as an outsider, I see things differently than her mother, who can see the different signals that convey how this girl feels. So I really need the parents to understand that. 3.2.6. The final decision maker 3.2.6.1. Parents. Almost all of the parents held the opinion that they were the right people to make the final EoLD. This was because these were decisions concerning their own child. However, many of them expressed that they were glad that they were able to make an EoLD about their child together with their involved physician. One couple of parents clarified that they had made the final decision together with the physicians, but that, in their perspective, their opinion was weighed the heaviest. Some parents mentioned that they found it difficult to make certain decisions for their child, such as resuscitation orders or decisions about mechanical ventilation. Parent: The decision about mechanical ventilation was hard for me. I wish I could decide at the moment that mechanical ventilation has to be installed. If she gets a heart attack or something is wrong with her heart, I would say, “I don’t want that.” But if something else is wrong, something that has never been a problem before, in that case, it’s a pity not to try mechanical ventilation. 3.2.6.2. Physicians. The physicians stressed that making decisions together was very important because this could facilitate the grieving process of the parents. Three physicians agreed with the parents that, although the decision was made together, the parents’ opinion was weighed the heaviest. Making decisions together with the parents meant different things to different physicians. Four physicians explained that, in their opinion, shared decision-making implied that they supported the decisions made by the parents. Three physicians expressed that their role was to solely give objective information to the parents that would enable them to make the best decision. The physicians emphasized that, although it was very important Table 5 Overall similarities and differences between parentsand physiciansexperiences. Overall similarities and differences between parentsand physiciansexperiences Similarities Differences Parents Physicians The influence of previous healthcare encounters Anticipation and timing of the EoLDM process Provision of information and advice A long-lasting treatment facilitated the EoLDM process because it contributed to mutual trust. The acute deterioration of the child was the most common reason to start discussions about EoLD. Disagreement Disagreements were considered helpful in exploring alternative pathways of action more suitable for the child’s specific situation. Former healthcare encounters made parents anticipate their wishes for their child if another critically illness occurred again. Parents felt not completely informed during the EoLDM process Reason for disagreement: 1. Time pressure 2. Absence of the regular physician. 3. Parents advocate for their child because they felt that physicians regarded the life of their child as less valuable than the life of a typically developing child. Physicians underestimated the readiness of parents to discuss an EoLD Physicians putted substantial effort info the provision of information to parents. However, this effort was complicated by an uncertain prognosis and unforeseen complications. Reason for disagreement: Parents wished for everything to be done, even treatments that were considered to be futile. Contributions to decision-making Parents should be considered as the experts on the well-being of their child. The final decision maker Both parents and physicians placed a high value on making decisions together during the EoLDM process. Meaning of making decisions together: Physicians supported parents as the final decision maker for their child. Meaning of making decisions together: Meaning varied from solely giving information to being the final decision maker, and sometimes, this depended on the type of EoLD that was being considered.

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