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


OBJECTIVE
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.


CONCLUSIONS
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.
Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands. Electronic address: i.h.schuller@amc.nl.
I H
IH
Zaal-Schuller
Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands. Electronic address: d.l.willems@amc.nl.
D L
DL
Willems
Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Centre Rotterdam, The Netherlands. Electronic address: f.ewals@erasmusmc.nl.
F V P M
FVPM
Ewals
Department of Paediatrics, Emma Children's Hospital - Academic Medical Centre, Amsterdam & Department of Paediatrics, VU University Medical Centre, Amsterdam, The Netherlands. Electronic address: h.vangoudoever@amc.nl.
J B
JB
van Goudoever
Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands. Electronic address: m.a.devos@amc.nl.
M A
MA
de Vos
D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D002547:Cerebral Palsy; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D019988:Children with Disabilities; D034462:Dissent and Disputes; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008607:Intellectual Disability; D008297:Male; D008875:Middle Aged; D000072141:Neurologists; D010166:Palliative Care; D010290:Parents; D000072143:Pediatricians; D011368:Professional-Family Relations; D036301:Qualitative Research; D016414:Resuscitation Orders; D012189:Retrospective Studies; D012720:Severity of Illness Index; D013727:Terminal Care; D055815:Young Adult
Caregiver; End-of-life; Healthcare professional; Intellectual disability; Qualitative research; Shared decision-making