End-of-life decision-making for children with severe developmental disabilities: The parental perspective.
Parents of kids with severe delays want to co-write the last chapter—invite them early and often.
01Research in Context
What this study did
Schertz et al. (2016) looked at nine past studies. They asked: what do parents want when doctors talk about end-of-life care for kids with severe delays?
The team pulled every quote and number about parent roles, hopes, and fears. Kids had diagnoses like global delay or multiple handicaps.
What they found
Almost every parent wanted to sit at the table. They did not want doctors to decide alone.
Parents pushed for choices that lowered pain and kept the child’s tiny joys—music, touch, familiar voices.
How this fits with other research
de Leeuw et al. (2024) widen the lens. Their scoping review shows the same families also fear future planning years before death. Caregiver guilt and scant services pop up again and again.
Williams et al. (2021) checked state forms. Most person-centered plans skip end-of-life lines. The gap hurts: parents in H et al. ask for shared decisions, but the paperwork gives them no space.
Todd (2007) listens after death. Parents feel “silenced grief” when teams vanish. H et al. warns: exclude them earlier and the silence starts before the heart stops.
Why it matters
You can open the conversation today. Ask parents: “What does a good day look like for your child?” Write it in the behavior plan. One paragraph is enough. This tiny act respects their wish to co-pilot, not just ride along.
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02At a glance
03Original abstract
BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. METHODS AND PROCEDURES: We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. OUTCOMES AND RESULTS: We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. CONCLUSIONS AND IMPLICATIONS: Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2015.12.006