Views
4 months ago

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.

End-of-life care and physician-assisted dying
End-of-life care: leaflet for clinicians - Royal College of Physicians
decision making with multiple imperfect decision makers - Institute of ...
the role of physician decision making in age-related inequalities in ...
Children's participation in the decision-making from a
The Experiences of Children with Lesbian and Gay Parents - An ...
Read Decisive: How to Make Better Choices in Life and Work | Download file
Download Decisive: How to Make Better Choices in Life and Work | pDf books
Download Decisive: How to Make Better Choices in Life and Work | Download file
advance decisions to refuse treatment - National End of Life Care ...
Aspects of Disability Decision Making: Data and Materials
Disability Decision Making: Data and Materials, May 2006
Children's Health, Nutrition & Disabilities PARENTING - Visual ...
[+]The best book of the month Decisive: How to Make Better Choices in Life and Work [FREE]
[+]The best book of the month Decisive: How to Make Better Choices in Life and Work [NEWS]
[+][PDF] TOP TREND Decisive: How to Make Better Choices in Life and Work [DOWNLOAD]
Intuition, Bias, and Experience in Field Decision Making ... - NOLS
Model to Assist Family Members in End-of-Life Decisions
School experiences of the children of lesbian and gay parents (PDF ...
[+][PDF] TOP TREND Free to Learn: Why Unleashing the Instinct to Play Will Make Our Children Happier, More Self-Reliant, and Better Students for Life [FULL]
End-of-Life, Quality of Death and Dying, and Physician Assisted Death
End-of-life care: leaflet for managers - Royal College of Physicians
The disabled children's services indicator– NI 54 - Leeds Parent ...
Study on How to Make a Decision From Multiple Walking ... - KAIST
Positive Parenting - How to Make Your Children Winners - Trans4mind
Front desk designed to make children and parents feel welcome
Download PDF Decisive: How to Make Better Choices in Life and Work Online
End of Life Care – Nurses' attitudes and experiences - European ...