9 months ago

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

286 I.H. Zaal-Schuller

286 I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 Table 1 Characteristics of children (n = 14). Characteristics of children (n = 14) Gender M F 4 10 Age 0–4 5–9 10–14 15–19 Primary diagnostic category Post-resuscitation Genetic condition Neurologic condition Metabolic condition Unknown Treatment decision Forego resuscitation Forego life-saving surgical procedure Forego life support Forego artificial nutrition Administrating medication to alleviate pain Palliative sedation 2 1 8 3 3 5 1 2 3 5 2 1 2 3 1 Deceased No Yes 12 2 Table 2 Characteristics of parents (n = 17). Characteristics of parents (n = 17) Parental role Mothers Fathers Age 30–39 40–49 50–60 Religious affiliation Protestant Islamic No affiliation Educational level Primary education Secondary education Higher education Marital status Married/living together Divorced/living apart Ethnic background Dutch Moroccan 14 3 5 9 3 2 4 11 2 6 9 14 3 13 4 Table 3 Characteristics of the physicians (n = 11). Characteristics of physicians (n = 11) Gender M F 2 9 Age 40–49 50–60 Religious affiliation Catholic Protestant No affiliation 8 3 2 1 8 Profession Paediatrician Rehabilitation specialist Paediatric Intensive Care specialist Paediatric Neurologist 6 1 1 3

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 287 Table 4 Overview of the main experiences of parents and physicians. Overview of the main experiences of parents and physicians 3.2.1. The influence of previous healthcare encounters 3.2.2. Anticipation and timing of the EoLDM process 3.2.3. Provision of information and advice 3.2.4. Disagreement 3.2.5. Contributions to decision-making 3.2.6. The final decision maker 3.2.1. The influence of previous healthcare encounters Parents. All of the parents described some negative healthcare encounters before the EoLDM process had started. Parents emphasized that their child with PIMD was different from typically developed children, for example, in the way that he or she reacted to pain and medications. Parents had many experiences in the past that physicians had not taken into account. Two parents blamed their physicians for making medical errors that caused severe brain damage in their child. These negative healthcare encounters had contributed to a critical attitude towards physicians. The majority of children had a long-lasting treatment relationship with a certain physician, and parents mentioned that they strongly preferred to start the EoLDM process with that physician. Parents believed that physician was more capable of giving tailored advice than a physician with less knowledge about the history of the child. Parent: We call the physicians by their first name. So no ‘doctor’; just their first name. Because, with all due respect, they don’t know anything about my child. (. . .) We don’t want too many physicians involved because anybody who thinks: ‘I can fix this’. . . Well, do you really think you can fix this? Well, in the past nothing has been fixed well. So, we are really afraid of this. Physicians. Many of the physicians also mentioned the importance of a long-lasting treatment relationship with the parents. Physicians put in a great deal of effort to achieve and maintain this relationship. Half of the physicians emphasized that parents had negative healthcare encounters during the lifetime of their child. Physicians recalled situations in which colleagues had given incorrect information about the child’s prognosis or situations in which children had received a failed treatment or operation that caused much pain and suffering over a long period of time. 3.2.2. Anticipation and timing of the EoLDM process Parents. All of the parents in this study had previously experienced serious illnesses and hospital admissions for their child. These experiences made parents think about what their wishes would be when their child became critically ill again, even before physicians started to speak about this issue. For this reason, almost half of the parents mentioned that they felt it was a missed opportunity that physicians did not take the initiative to talk about EoLDs when the child was still in a stable condition. They doubted whether procedures like intubation, intravenous antibiotics administration would have been performed if they had the opportunity to talk with their child’s physician about the appropriateness of these procedures. The reason most parents mentioned to actually start the EoLDM process was because of their child’s acute deterioration by, for example, sepsis, pneumonia or a high fever. Physicians. Most physicians had a longstanding relationship with the child with PIMD and his or her parents. Even if an EoLD was never discussed with parents before, many physicians thought they knew how parents felt about this topic. As one physician put it, ‘These parents were very reluctant to pursue invasive treatments’. Although many physicians had an idea about how parents felt about EoLD, they found it very difficult to identify when parents were ‘ready’ to discuss these decisions. Many physicians mentioned that the acute deterioration of a child was the most common reason to discuss withholding or withdrawing of certain treatments. Two physicians emphasized that the improvement of the physical condition of a child could also be a reason to reassess the agreements and to sometimes reverse decisions. Four physicians expressed their wish to discuss and reconfirm resuscitation orders on a regular basis, for example, during annual appointments at the outpatient clinic. Physician: It just made sense. In the years before it was very clear to me. . . only it had never been written down before. . . but for me, it was very clear that these parents. . . that these parents did not want to push it to the limits and did not want their child to end up at the PICU with invasive ventilation, failing to wean off the ventilator. 3.2.3. Provision of information and advice Parents. Four parents emphasized that the information and advice of their child’s regular physician had been very important to them during the EoLDM process. However, the majority of the parents experienced a lack of information during the EoLDM process, for example about the available treatment options. Moreover, many parents felt they lacked the necessary medical background to put the information they received in the right context. Almost all of the parents looked for additional information by searching on the internet, going to another physician to obtain a second opinion, or asking

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