By Arabella Tresilian, independent health & care mediator
A talk I presented at UK Therapeutic Jurisprudence’s conference on Health and Therapeutic Jurisprudence, at the University of Manchester, 20th Jun25
Good morning, and thank you for the invitation to speak.
I’m the parent of two now-adult children with health and care needs, and I have a background in public sector management. It was my combined parenting and professional journey that led me to the work I have now done for nearly 10 years: mediating disputes and disagreements in health and care settings.
I am not a lawyer, nor a healthcare professional. Mediators are simply communication facilitators who assist people to achieve shared decision-making about crucial matters, with and without the involvement of their lawyers.
I’d like to use my time today to reflect on what mediation can offer in some of the most sensitive areas of healthcare decision-making, particularly cases involving the possible withdrawal of life-sustaining treatment for a child.
Let me begin with a not untypical opening to a case on a PICU. A doctor might say to me, “We’ve spoken to the parents about mediation.”
I’ll ask, “And what have you told them mediation is?”
They might respond, “That we’ll all come into a room, both sides will share their points of view, and we’ll aim to meet in the middle.”
And then I ask, “If mediation doesn’t result in agreement and an action plan, what happens next?”
The answer, more often than not, is: “Our legal team will initiate court proceedings.”
So then, I ask: “Does the family know that?”
“Oh no,” the doctor will say. “We don’t want them to feel we are threatening them. We just want to see where mediation takes us first.”
This is where I want to begin drawing out some observations about how medical mediation and therapeutic justice speak to each other – because what we say and don’t say at the outset of a dispute resolution process shapes the entire experience.
Firstly, mediation is not simply a search for the middle ground – and certainly not when the issue is the possible withdrawal of life-sustaining treatment from a child. By the time a hospital trust is contemplating legal action, it will usually have taken specialist advice and reached the view that withdrawal is in the child’s best interests. The idea of a “middle ground” between a legally and medically informed position and a family’s hope for continued life is rarely realistic.
Secondly, when the possibility of imminent court proceedings is not made clear to the family – even with good intentions – it can have serious consequences. Families often arrive at mediation unaware of their legal position. They may not have received legal advice, and may believe that if they explain themselves clearly enough, the hospital – or even the court – will see things their way. Often, they are unaware of what court proceedings actually involve: that their child will have their own solicitor and guardian; that their own role in court will be limited; and – crucially – that while the court considers each case on its merits and listens carefully to all the evidence, the majority of decisions to date have favoured the hospital’s position, with a handful of notable exceptions, such as the case of Tafida Raqeeb.
But far beyond the legal outcomes, families are unprepared for the emotional and practical reality that if the court agrees treatment should be withdrawn, that decision may be acted on within 48 hours. The end of their child’s life is suddenly upon them. And having spent months in fight mode, defending that life, they’ve often had no opportunity to prepare emotionally, culturally, or practically for death.
When I meet families, they’re often already in anticipatory grief. Exhausted. Traumatised. Feeling pushed and unheard. And they may feel their only option is to fight – more.
They’ve seen media coverage of parents fighting for their child and attracting global support – from world leaders, international figures, and public campaigns. But in my experience, parents don’t fight simply because they’re combative or unrealistic. They may fight when their deeper needs haven’t been seen. Often – especially for fathers, though not exclusively – fighting becomes a way of expressing love. It’s a visible form of devotion. And the deeper, unspoken need is simply this: to show unwavering love for their child.
In some communities, as I am learning through interviews overseas during my Churchill Fellowship this year, there may also be social judgment and stigma attached to a child’s death. Parents may feel they’re being watched, or that consenting to the withdrawal of life-sustaining treatment is akin to giving up – or turning away from cultural beliefs about the sanctity of life. These deeper cultural realities – and the meaningful involvement of wider community networks – must form part of early conversations, not be treated as an afterthought.
Now, here’s one of the hardest things I see in practice: the current formalities around consent. While those with parental responsibility are, in law, the decision-makers, the hospital may reach a position that continued treatment is no longer in the child’s best interests. In such cases, the hospital must either seek the family’s consent or apply to the court for a decision. Families may feel intense pressure to agree with the hospital’s view, and are often asked to sign documentation as part of the consent process. But instead of saying, “This is what will happen,” the hospital may say, “This is what we believe is best for your child. We’d like you to agree, and in order to proceed, we need you to sign this form.”
This is an impossible position for many parents. In her exceptional book, Anything for My Child, Stephanie Nimmo, a bereaved parent and advocate, talks about the awful conundrum of “abandoning parents to their own autonomy.” Effectively, by asking the family to decide whether or not to consent, they may feel they are being asked to decide whether their child lives or dies – when in fact the treatment team has already reached a clinical decision, and a legal process exists for resolving disagreement.
So in mediation, we offer a process for resolving such disagreements in a way that allows the families to remain agents in the outcome. We name the reality: that while parents are the legal decision-makers, they may feel as though the power sits elsewhere – particularly when the trust’s position is underpinned by legal advice, and the court tends to support the hospital’s view. We acknowledge and define the limited nature of the ‘zone of parental discretion’. We create space for parents to express their love, even in the face of dying. That expression may be cultural, religious, familial – it may be creative. It may involve the wider community. But whatever form it takes, it’s essential.
Second, if all would like, we may talk honestly about what happens if there’s no mediated agreement – including the likelihood and timeline of court proceedings. That clarity, painful as it is, is an essential act of respect. It lets families make informed choices, and seek legal advice or representation as part of the mediation process, not after it. We may make a timeline for Clinical Ethics Committee meetings and Second Opinions, if that hasn’t been done.
Third, we may acknowledge – explicitly – that the consent being asked of parents is not the same as unfettered decision-making. We allow space for grief, for truth, and for the hospital to take ethical responsibility, rather than placing the emotional burden of the decision on the family.
Fourth – and importantly – we may talk about death. Not euphemistically, but practically and compassionately. If families feel safe enough to begin these conversations, we can plan the end of life with meaning: memory-making, spiritual rituals, family presence, timeframes. Hospitals are often excellent at this, once it’s clear that death is coming. But families must be given the chance to arrive at this point of emotional readiness before the final days.
Too often, this hasn’t been possible because the entire relationship has remained in the realm of hope and positivity. Families tell me they were encouraged by the hospital’s optimism – but no one told them when the hope ran out. Professionals became vague or opaque. And while this is deeply human – who wants to break a parent’s heart? – it leaves families confused, unprepared, and angry, especially when litigation looms on the horizon.
In some mediations, we may simply narrow the issues – for example, agreeing on ceilings of care, specific medications, ward communication practices, or the initiation of ‘parallel planning’ with the palliative care team. The parties may then mutually decide to seek a judicial ruling on a particular point, such as the withdrawal of ventilation. This is not a failure of mediation. On the contrary, when that decision is reached collaboratively, it is one expression of therapeutic justice in action.
As mediators in these cases, we often hold a unique space: one foot in the institutional world of policy, risk, and precedent – and the other in the human world of anguish, uncertainty, and love. Our neutrality is not emotional detachment. It’s presence. We are not decision-makers, and we don’t bring legal authority – but we do hold the process. And often, our role is to help professionals slow down just enough to allow the family’s reality to come into view. To make space for things that otherwise may get flattened by urgency, by protocol, or by fear. We may address barriers of language, understanding, and culture. We may offer a modifier to some of the systemic inequities in health and care, particularly those experienced by marginalised and racialised communities.
I will give a case study based on a mosaic of my cases, to protect privacy. I worked with a Muslim family and their treating team who were in disagreement about the withdrawal of life-sustaining treatment of a young child on the PICU. Through mediation, the multigenerational family group and their spiritual advisers were able to make the decision to give parental consent to what was referred to as ‘compassionate extubation’. Rather than spend the last weeks of their precious daughter’s short life in litigation, they were instead able to spend several weeks making memories, receiving family visitors from overseas, and sharing religious observances together. The nature of the extubation process had been agreed and everyone knew what would happen. When the little girl died in a private room on the PICU, this generous family gave gifts to their medical team. The relationship between family and team around this child had been repaired and maintained, in the hardest of circumstances. The mother later said that mediation had been “extremely helpful”. The doctor said, “I think the mediation process and especially the inclusion of the wider family in it, made a huge difference.” I wonder to what degree the atmosphere around that child would have been different at the end of her short and precious life had the family and medical team remained in disagreement?
In closing, to me, as both a mediator and a parent, therapeutic justice in medical disputes means creating compassionate, trauma-informed, and psychologically safe spaces where families and professionals can be supported to communicate openly and constructively in the face of heart-rending decisions. Mediation is a voluntary process in which outcomes are shaped by the parties themselves. While litigation places decisions in the hands of the court, mediation allows parents to retain a sense of agency – to be heard, to express love, and to contribute meaningfully to the outcome. This perhaps marks therapeutic justice because it honours both the emotional reality and the ethical complexity of these moments. It helps prevent further harm, restores dignity, and enables families to accompany their child with clarity, care, and love.
Thank you.
Post script: Research on therapeutic justice in medical mediation
Since I gave this talk, Dr Jaime Lindsey has published her fascinating and valuable findings on therapeutic justice in medical mediation. Learn more here: