How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities.
End-of-life choices go best when doctors stay put and treat parents as the real experts on their child.
01Research in Context
What this study did
Schertz et al. (2016) talked with Dutch parents and physicians. They asked how they make end-of-life choices for children with profound intellectual and multiple disabilities.
The team used long, open interviews. They wanted to learn what helps or hurts shared decisions.
What they found
Parents said the same doctors year after year made trust grow. Quick hand-offs broke trust.
Doctors who said "you know your child best" made parents feel like partners. Then parents could speak up about comfort care, feeding, or breathing support.
How this fits with other research
Vassos et al. (2023) asked the same parents how to judge quality of life. Parents again said only people who have a long, close bond should do the judging. The new study moves the trust idea from end-of-life talks to everyday assessment.
Burney et al. (2025) looked at behavior analysts who are also parents. These clinician-parents said humility and valuing lived experience boost teamwork. The theme matches: respect parent expertise, no matter the setting.
Lee et al. (2019) found parents and siblings struggle to plan future care for adults with IDD. Both papers show big life plans go smoother when families feel heard, yet the 2019 work covers adult transitions, not child end-of-life.
Why it matters
You may never stand at a hospital bed, but you do share decisions. Ask parents, "What only you know about your child?" Write their answer in the plan. Keep the same team on the case. When trust is high, parents accept goals, sign forms, and stay in therapy.
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02At a glance
03Original abstract
BACKGROUND: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. AIMS: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. METHODS: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. RESULTS: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. CONCLUSION: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.09.012