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

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 59 (2016) 283–293 285
past two years in a clinical setting. Parents of children who had died after an EoLD had been made were included as well as
parents of children who were still alive.
We strived to achieve a large variety of cases according to the following patient-related characteristics: age, gender,
diagnosis, prognosis and co-morbidity. We also sought variety according to the following parent-related characteristics:
age, length of physician-family relationship, religion and ethnic background. Parents who wished to participate in the study
were asked to contact the first author by telephone or by e-mail to arrange an interview. Four of the parents were not eligible
for this study because they had not been involved in the EoLDM process or because the decision had been made too long
ago. All of the participants provided audiotaped informed consent before participating in the interview. At the end of the
interview, the interviewer asked the parents for their consent to contact their child’s physician for an interview. Physicians
received ample information about the study via e-mail. Two weeks later the interviewer contacted them by telephone to
ask for their consent. This time frame was chosen to give physicians sufficient time to consider their participation. During
this phone call, physicians were given additional information about the study. They were ensured absolute anonymity and
they were given the opportunity to ask any remaining questions. The hospital’s Medical Ethics Review Committee approved
the protocol for this study.
2.2. Data collection
The first author, who was an Intellectual Disability-physician in training at the time, conducted the semi-structured
interviews with parents and physicians using the same interview guide. This interview guide was compiled after a literature
search for questionnaires about this topic (Carnevale et al., 2007; Partridge et al., 2005; Provoost et al., 2006; Sharman et al.,
2005; Williams et al., 2009). After discussing the questionnaire with a second researcher (MdV), some questions were added,
and the definitive questionnaire was composed. The questionnaire contained questions to describe the EoLDM process for
each individual child from the perspective of the participants. The interview guide contained open-ended questions about
the motives for discussing an EoLD, the steps preceding an EoLD, the main considerations for an EoLD, the occurrence and
resolution of conflicting points of view, who made the final decision and what could have been done better.
All of the interviews were audiotaped. All but two of the parents chose to be interviewed at home. Most physicians were
interviewed in the hospital; three physicians preferred to be interviewed at home. Parents and physicians were asked to
provide demographic information before the open-ended questions were presented to them.
2.3. Qualitative data analysis
The tape-recorded interviews were transcribed verbatim. The transcripts were analysed using the qualitative data analysis
software, MaxQDA. An initial subsample of three transcripts was independently coded by the main researcher (IZ) and a
research assistant to identify important and/or striking experiences of parents and physicians prior to, during and after
the process of EoLDM. Subsequently, these two researchers compared their codings and constructed a coding dictionary
that contained a detailed overview of all of the experiences mentioned by the respondents. A third investigator (MdV) then
read three more interviews to check and complete this dictionary. With this final dictionary, the main researcher coded
all of the interview transcripts. Two investigators (MdV and DW) randomly checked these codings. The overall agreement
was practically 100%. Finally, three investigators (IS, MdV and DW) elaborately compared the applied codes across all of
the interviews and, after extensive discussion, integrated them into discerning patterns regarding the experiences of both
parents and physicians. These patterns are presented in the results section.
3. Results
3.1. Characteristics of the participants
Parents of fourteen children agreed to participate in this study. For three children, the parents were interviewed together
as a couple; for the remaining children, only the mothers were interviewed. All of the parents agreed that the interviewer
could approach their child’s physician, except one couple. The parents of this child were involved in a disagreement with
their child’s physician, and they feared that an interview would lead to an escalation. Of the thirteen physicians who we
approached, two physicians refused to be interviewed because they believed it could harm their relationship with the child’s
parents.
The characteristics of the participants can be found in Table 1 (children), Table 2 (parents) and Table 3 (physicians).
3.2. Experiences of parents and physicians
In analysing and comparing the interviews with the included parents and physicians, six main themes emerged. The
integrated findings of both parents and physicians are presented according to these themes in consecutive order. An overview
of these main experiences is presented in Table 4.