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

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

Research in Developmental Disabilities 59 (2016) 283–293 Contents lists available at ScienceDirect Research in Developmental Disabilities How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities I.H. Zaal-Schuller (MD) a,∗ , D.L. Willems (MD, PhD) a , F.V.P.M. Ewals (MD) b , J.B. van Goudoever (MD, PhD) (Prof) c , M.A. de Vos (MSc, PhD) a a Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands b Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Centre Rotterdam, The Netherlands c Department of Paediatrics, Emma Children’s Hospital – Academic Medical Centre, Amsterdam & Department of Paediatrics, VU University Medical Centre, Amsterdam, The Netherlands a r t i c l e i n f o Article history: Received 25 May 2016 Received in revised form 28 July 2016 Accepted 15 September 2016 Available online 22 September 2016 Number of reviews completed is 2 Keywords: End-of-life Shared decision-making Intellectual disability Caregiver Healthcare professional Qualitative research a b s t r a c t 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. © 2016 Elsevier Ltd. All rights reserved. ∗ Corresponding Author at: Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands. E-mail addresses: i.h.schuller@amc.nl (I.H. Zaal-Schuller), d.l.willems@amc.nl (D.L. Willems), f.ewals@erasmusmc.nl (F.V.P.M. Ewals), h.vangoudoever@amc.nl (J.B. van Goudoever), m.a.devos@amc.nl (M.A. de Vos). http://dx.doi.org/10.1016/j.ridd.2016.09.012 0891-4222/© 2016 Elsevier Ltd. All rights reserved.

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