Considering quality of life in end-of-life decisions for severely disabled children.
End-of-life meetings skip what the child actually enjoys—run a quick QoL checklist so the child’s joy gets a voice.
01Research in Context
What this study did
Schertz et al. (2018) talked with parents and doctors of children with profound intellectual and multiple disabilities.
They asked what parts of life give these children joy, comfort, or meaning.
The team compared parent answers with doctor answers to see if they matched.
What they found
Parents and doctors listed the same quality-of-life items: being held, hearing music, seeing loved faces.
Yet during real end-of-life talks, no one named these items out loud.
The big items stayed silent even when teams chose to stop or start life-saving care.
How this fits with other research
Kruithof et al. (2022) later asked parents of adults with the same disabilities.
Those parents also judged quality of life and wanted doctors to honor their view, showing the child focus of Schertz et al. (2018) extends across the lifespan.
Schertz et al. (2016) had already shown parents want shared choices; the 2018 study reveals the shared talk still misses the child’s own joys.
English et al. (2020) scoping review found only two studies where people with ID spoke for themselves at end-of-life, matching the silence Schertz et al. (2018) saw.
Why it matters
You can fix the silence. Bring a short checklist of proven quality-of-life items to every end-of-life meeting. Ask each team member to tick what the child enjoys. This five-minute step forces the child’s experience into the plan and keeps parents and doctors aligned.
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02At a glance
03Original abstract
BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.
Research in developmental disabilities, 2018 · doi:10.1016/j.ridd.2017.12.015