First paragraph: When a child is sick and parents and doctors disagree about what to do next, who is best placed to make that decision? This is a tricky but not uncommon question – with a number of recent high-profile legal cases highlighting the limits of parents’ rights to decide what treatments should be offered.https://theconversation.com/when-doctors-and-parents-disagree-on-how-to-treat-a-sick-child-the-emotional-and-financial-costs-can-be-huge-12467

Forbat, Liz

English

Stirling Online Research Repository

AuthorLiz ForbatAssociate Professor of Ageing, Universityof StirlingAcademic rigour, journalistic flairWhen a child is sick and parents and doctors disagree about what to do next, who isbest placed to make that decision? This is a tricky but not uncommon question – witha number of recent high-profile legal cases highlighting the limits of parents’ rights todecide what treatments should be offered.The issue has been brought into the spotlight again after the parents and healthcare team of Tafida Raqeeb disagreed about whether she should be offered life-sustainingtreatment. Tafida’s parents wanted to take her to Italy for treatment, but aspokesperson for Barts Health NHS Trust, where she is being cared for, said that:“further medical treatment would not improve her condition”.The High Court ruled that “life-sustaining treatment” for Tafida must continue – and Barts NHSTrust’s application to withdraw life support was dismissed. Tafida’s parents argued that under Islamonly God*Allah* can make the decision to end her life, and so they wished to continue treatment.Conflicts between parents of very sick children and hospital staff are not uncommon, and oftenbecome high-profile when legal interventions are triggered. Tafida’s case is typical of healthcareconflict – clinicians are reluctant to offer treatments that are likely to be futile and parents areshutterstock/wonderislandWhen doctors and parents disagree on how to treat a sickchild the emotional and financial costs can be hugeOctober 9, 2019 1.07pm BSTdesperate to try everything for their child – even if the odds of success are low. At the heart of suchcases is a breakdown in communication between the clinicians and the family about what is in thechild’s best interests – so the law intervenes when relationships fail.Huge emotional impactI’ve been conducting research for many years in the field of healthcare conflict in children’s hospitals,and other healthcare settings, including adult palliative care. Families losing trust in clinicians is a keycause of conflict – along with poor communication and different ideas about the goals of care for achild.Different cultural or religious beliefs also complicate communication about what treatments areconsidered essential or burdensome. These factors all combine, particularly, if the child has a verycomplex condition requiring clinicians from a range of different specialities and where the child has alife-limiting prognosis.Treatment decisions are usually made jointly between parents and clinicians. Parents often have somediscretion to try approaches clinicians do not favour, but ultimately hospitals keep the “best interestsof the child” as the main focus.My work has shown how conflict creates huge emotional and financial costs for both families andclinicians. In one study it was estimated that 448 hours of staff time was used in managing conflict inone children’s hospital over a period of 24 weeks – and that this time cost the NHS more than£9,000.Parents of very sick children and their doctors need to find a way to get on without going to court. Hush Naidoo/UnsplashChildren Hospitals Conflict Health Parents Charlie GardIn our research, we have documented how conflict escalates. Initial conflict might include insensitiveuse of language, staff giving conflicting messages about a child’s status, or a history of unresolvedconflict in other services. Conflict then escalates to include repetitive arguments, staff or familiesavoiding contact with each other, and families micromanaging or documenting all care activities. Atthe most severe level of conflict, the relationship between staff and family disintegrates – the conflicttakes on a life of its own and staff can experience physical and verbal threats and attacks. Weinterviewed 30 staff – some of whom, as a result of such conflicts, had been left anxious and bruised.Crisis casesOur research has also highlighted how it takes considerable skill and courage for healthcare staff tomanage conflict with the parents of very sick children. And hospital staff often have no right to replywhen conflict cases make the news. Bound by patient confidentiality they have no voice to express theprofound and lasting impact such conflicts and court cases have on them and they are unable topublicly talk about being threatened or attacked at work.Research shows that providing staff with training in mediation skills helps. Six months after receivingtraining, 57% of health care staff had experienced conflict – of whom 91% reported that the traininghad enabled them to de-escalate the situation. Part of the training centres on fostering empathy andsupporting staff to listen to parental anxiety. We use a video produced by a health provider in the US– the Cleveland Clinic – which powerfully illustrates the need for both staff and families to empathisewith each other.We have also tested a new conflict management framework, that was developed by the Medical Mediation Foundation – which helps to resolve conflicts between health professionals and families inthe UK – as a way of deescalating conflict. The framework offers staff a structured approach to talkingwith families about disagreements, documenting discussions and escalating concerns. Early resultsfrom this study in a children’s cancer centre indicate that the framework can help to reduce thefrequency and severity of conflict.It is clear there must be compassion for both families and staff who are supporting children withcomplex and life-limiting illness. Keeping these cases out of the courts has to be a core objective.Spotting conflicts in their early stages and training staff in mediation skills both have considerablepotential to keep these cases out of the courts – and that has to be good for the child, the parents andthe clinicians.Do you think more people should hear what the experts are saying?The Conversation serves society by making knowledge accessible to everyone, notjust a select few. Our only agenda is a better informed public. If you care aboutwhat we do please make a donation now and help secure our future.Donate NowThe Conversation UKYou might also likeThe UK doesn’t spend enough on the mental health of young people – we found out whyChildren should be more involved in healthcare decisions that affect themContested care: when disputes over child cancer treatment reach the courtsMost women give birth in hospital – but it’s got more to do with World War II than health

When doctors and parents disagree on how to treat a sick child the emotional and financial costs can be huge

First paragraph: When a child is sick and parents and doctors disagree about what to do next, who is best placed to make that decision? This is a tricky but not uncommon question – with a number of recent high-profile legal cases highlighting the limits of parents’ rights to decide what treatments should be offered

Stirling Online Research Repository (RIOXX)

https://dspace.stir.ac.uk/retrieve/765dff41-132c-4eaa-929f-c687a9ec905b/Forbat-Conversation-2019.pdf

When doctors and parents disagree on how to treat a sick child the emotional and financial costs can be huge

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