In December 2022, the Nuffield Council on Bioethics was commissioned by the Secretary of State for Health and Social Care to undertake an independent review (the review) of the disagreements that arise in the care of critically ill children in England, following a government commitment under s177 of the Health and Care Act 2022.
The review was commissioned because of the incidence and impact of high-profile disagreements following a number of disagreements in short succession which attracted national and international media attention to reduce the profound impact and long lasting implications for everyone involved.
It makes recommendations across groups and organisations which, if implemented, are believed would help to improve the experience for both families and healthcare professionals when faced with disagreements.
Families who are already dealing with difficult circumstances in caring for their critically ill child can find themselves in a position of navigating their child’s care in an unfamiliar environment, whether this be in an ICU or a court room with little to no support and, sometimes, under the microscope of the media.
Whilst healthcare professionals often find themselves under intense scrutiny, compelled to provide care and treatment that they do not believe is in the best interests of the child, this in turn can be in conflict with their moral, ethical and professional values
Keeping in mind the critically ill child whose condition remains unchanged, the focus ought to be on making the situation less distressing for all involved, to allow decisions to be made more quickly, collaboratively and compassionately.
Common Factors in Disagreements:
- Communication, including failures to tailor this appropriately to an individual’s needs, whilst acknowledging parents as experts in their children, misunderstandings and mixed messages, and the timing of sensitive, difficult or distressing conversations.
- Mismatched expectations in terms of what is medically possible, what information is or is not significant, or what may be involved in palliative care.
- Lack of information being available to parents in relation to their child’s condition and prognosis, alongside a lack of variable information about support available for parents with a critically ill child.
Recommendations:
- Further research to gather evidence from parents about their experiences of shared decision making with healthcare professionals.
- The Ministry of Justice and His Majesty’s Court and Tribunal Service should convene and report on a round table discussion to consider a more sensitive approach to court proceedings for parents.
- Researchers to explore ethical issues to ensure their work is informed by available evidence from parents and children.
- Providers of undergraduate and post graduate qualifications for healthcare professionals to ensure curricula content on how to build and maintain relationships with families.
- The Department of Health and Social Care (DHSC) to require NHS trusts in England to provide all staff working in environments where children are treated with access to regular training and continuous professional development (CPD) in relationship-building skills and in identifying and managing disagreement.
- Representatives and membership organisations of healthcare professionals working with children to collate and publish a bank of resources relevant to relationship building and improving communication with families.
- Emotional support and regular training from the NHS for healthcare professionals.
- Guidance for teams on how to seek information from parents and children about communication needs.
- The Royal College of Paediatrics and Child Health (RCPCH) should collaborate with families, palliative care providers and charities to produce accessible information for families about palliative care, and work with other healthcare professional membership organisations to ensure that all healthcare professionals working with children are aware of and have access to it.
- NHS England to publish resources to assist families in navigating healthcare systems.
- The Children and Family Courts Advisory Service (CAFCASS) should give parents information about the role of the children’s guardian, including what they can expect from the guardian and what to do if they have concerns.
- Healthcare professionals in clinical leadership roles should take responsibility for modelling a team culture which recognises and prioritises relationship-building with children and parents as an integral part of providing good holistic care to a child.
- NHS trusts should ensure that protocols are in place so that when requested, parents are provided access to their critically ill child’s medical records within a week of the request being made (where practicable), in the absence of any factors that would prevent disclosure such as lack of consent from a child with capacity or safeguarding issues.
- NHS trusts should inform families within three calendar days of taking the decision to initiate court proceedings in order to give them sufficient time to seek independent legal advice and collate necessary information to disclose to the court.
- Guidance for clinical ethics committees (CECs) in England should be produced on how to ensure that parents’, and where appropriate children’s, views are taken into account in CEC discussions.
- Government taskforce to implement and have oversight of the recommendations.
Next Steps
Danielle Hamm, Director of the Nuffield Council on Bioethics said:
“For our recommendations to have any lasting positive impact they must be seen and implemented as a collective, which is why we believe the Government forming a new taskforce with this overarching focus is key.”
As it currently stands, no timescales have been implemented in order to action the recommendations, however Health Minister Maria Caulfield confirmed they are going to be considered, and they ‘will update in due course.’
This article was authored by Lucy Parker, for more information or guidance from our Healthcare and Public Law experts please get in touch.
For further information, please contact:
Emma Pollard, Hill Dickinson
emma.pollard@hilldickinson.com
