Paths to Dispute Resolution in Paediatric Care Management Decisions v4
Research type
Research Study
Full title
Towards Avoiding Conflict in Difficult Care Management Decisions: understanding the causes of local disputes in paediatrics in order to develop pathways to dispute resolution in NHS Grampian
IRAS ID
315503
Contact name
Sarah Ann Sivers
Contact email
Sponsor organisation
Robert Gordon University
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary
Conflicts over the care of children with life-limiting conditions can reach the point where the only resolution is to ask courts to decide what is best, incurring costs in time and money. Having parents and NHS staff give evidence in court results in distress, unwanted publicity and social media attention. This was seen in the English case of Charlie Gard where the judge pleaded for parties to try to resolve disputes without court intervention in future. This is a priority area for NHS Grampian, as evidence by the funding we have received to carry out this project from NHS Grampian Endowments Research fund 2022. It is also a key issue for Scottish children's hospitals as the law in Scotland is different to that in England, and no case has yet come to a Scottish court to set a precedent. A toolkit designed to reduce the risk of a Scottish court being asked to make such a decision is needed.
The proposed study is the first step in creating such a toolkit. We will interview Grampian families and clinicians to gather their experiences and views of disagreements about care. Our results will be used by our medical and legal team members to develop resources to assist in understanding and recognising conflict, and pathways to resolution to allow NHS Grampian and parents to avoid court costs. Our ultimate step (which will be the subject of a further funding bid) will be to develop a toolkit for conflict resolution across all Scottish Health Boards.
Summary of Results
The problem - Conflicts between parents and clinicians over the care of children with life-limiting conditions can reach the point where courts must intervene, causing distress, unwanted media attention and costs. This NHS Grampian study sought to understand the reasons for disputes, identify potential solutions and reduce the risk of a case coming before a Scottish court. This study was funded by the NHS Grampian Charity. We are indebted to all the participants who gave their time, and entrusted us with their honest, open and moving experiences of the care of a child with a life-limiting condition.
Our findings from interviews with parents and clinicians involved in the care of children with life-limiting conditions -
What did participants agree on?
- that the impact of disagreements on parents and clinicians is significant and the damage can be vast.
- that there is a shared desire to avoid conflict.
- that significant improvements have already been made (more active anticipatory care planning, shift away from paternalism, inclusion of parents).
- that the costs of disagreements are emotional, psychological, familial, and social, as well as financial.Where did parents’ and clinicians’ views differ?
- the timing of anticipatory care planning discussions.
- how soon specialist charities are signposted.
- the extent to which empathy is exercised.
- the use of technical language.
- the inclusion of parents in initial team meetings.
- the extent to which parents’ understanding and expertise in their child is recognised and acted upon.
- the level of support provided to parents, and how peer support networks are highlighted.Recommendations -
• Embed empathy, as well as communication skills, more fully into clinician training, with further focus for those progressing within paediatrics as a specialism.
• Clarify the scope and increase the availability of independent “advocacy” for parents from specialist charities.
• Establish a single point of contact to liaise on behalf of parents and investigate whether this role is best provided through the NHS or the charitable sector.
• Ensure that anticipatory care planning discussions happen as early as possible in all cases.
• Provide greater institutional support for clinicians and more accessible fora to discuss difficult issues.
• Appreciate that one size does not fit all, and that clinicians need to adapt their approach for each family.REC name
North of Scotland Research Ethics Committee 2
REC reference
22/NS/0103
Date of REC Opinion
16 Aug 2022
REC opinion
Favourable Opinion