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

•A long-lasting treatment relationship facilitates end-of-life decision-making.•Physicians underestimate parents’ readiness to discuss end-of-life decisions.•Disagreements can improve decision-making by looking for alternative solutions.•Parents are considered to be the experts on the well-being of...

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Veröffentlicht in:	Research in developmental disabilities 2016-12, Vol.59, p.283-293
Hauptverfasser:	Zaal-Schuller, I.H., Willems, D.L., Ewals, F.V.P.M., van Goudoever, J.B., de Vos, M.A.
Format:	Artikel
Sprache:	eng
Schlagworte:	Adolescent Adult Attitude of Health Personnel Attitude to Health Caregiver Cerebral Palsy Child Child, Preschool Decision Making Disabled Children Dissent and Disputes End-of-life Female Healthcare professional Humans Infant Infant, Newborn Intellectual Disability Male Middle Aged Neurologists Palliative Care Parents Pediatricians Professional-Family Relations Qualitative Research Resuscitation Orders Retrospective Studies Severity of Illness Index Shared decision-making Terminal Care Young Adult
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