Ethics in Child Health: Truth with hope: ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information

What does it mean to be an ethical source of support? An important first step is to establish shared decision-making between families and professionals, underpinned by the belief that families know their child best and want to help. Even though a diagnosis can cause stigma, diagnostic labels can also open doors to intervention services, which most parents understandably want as soon their child is diagnosed.

This module will outline the major types of diagnostic and prognostic news, as well as evidence-based intervention decision-making that typically needs to be communicated to parents of children with cerebral palsy over the lifespan. It outlines an ethical and evidence-based framework for communicating this often difficult and complex information in a way that facilitates family coping, taking into consideration unique family characteristics.

01 Clinical scenario (video)
02 Prologue (video)
03 The ethics of sharing news
04 Non-maleficence
05 Autonomy
06 Beneficence
07 Justice
08 An evidence-based process for sharing news
09-15 SPIKES (Steps 1-6) (video)
16 Themes for discussion
17 Epilogue (video)

References
User Guide
Learning Account

Iona Novak, Professor, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney, Australia

Marelle Thornton, Former President of the Board and Parent, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney, Australia

Cathy Morgan, Research Fellow, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney, Australia

Petra Karlsson, Research Fellow, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney, Australia

Hayley Smithers-Sheedy, Research Fellow, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney, Australia

Nadia Badawi, Chair of Cerebral Palsy, Cerebral Palsy Alliance, Discipline of Child and Adolescent Health, The University of Sydney; Grace Centre for Newborn Care, Children’s Hospital at Westmead, Discipline of Child and Adolescent Health, The University of Sydney, Australia

• We offer clinicians and other professionals a set of guiding principles that overlap with and complement principles of ‘best practice’ and practical clinical wisdom. The authors are distinguished experts drawn from all over Europe and North America. The emphasis throughout is on clinical methods, the use of appropriate investigations and treatments, and the avoidance of unnecessary or potentially harmful interventions:

  • Complements your clinical training to improve knowledge and clinical practice in an important but often neglected area of practice;
  • Newly-recorded original video content for an immersive and personal learning experience;
  • Interact with the material by answering reflective activities to immerse yourself in a personal response to ethical issues;
  • Read further with references and supplementary materials;
  • Receive a PDF certificate on completion, and  documents of your submitted responses and personal notes.

This online resource is designed to help clinicians, therapists, nurses, as well as parents and families, to place practical ethical thinking at the heart of care. It will be very useful for doctors and professionals in training or already involved in child healthcare, including paediatric neurologists and paediatricians in senior positions, child psychiatrists in training, developmental specialists, rehabilitation specialists and policymakers.