Post image
Source: Instagram/@charliesfight

Chris Gomez and Helen Roper, the bereaved parents of a terminally ill daughter, write about their experience of medical mediation

The recent case of Charlie Gard has raised the profile of medical mediation where there is a serious dispute between parents and their child’s medical team about the care the child should receive.

According to press articles, Charlie’s parents declined mediation; the judge felt that the lack of attempts at mediation between the parents and medics had directly led to the difficult and emotionally draining court ‘battle’ between the two.

But what is medical mediation? What does it do? Does it help families or is it simply another way to get them to agree to the medical perspective? Alternatively, is it just another waste of resources in our cash-starved NHS?

In May 2015, our unborn daughter Rumer Gomez was diagnosed with a rare chromosomal condition: trisomy 18. Babies born with trisomy 18 are usually only offered palliative care. This means they will not be resuscitated if they are born not breathing; they will not be given breathing support other than oxygen; they will not be admitted to intensive care; they will not be given heart surgery if they need it.

Because research showed that being given treatment like other babies improved the chances of survival for babies with trisomy 18, we wanted Rumer to have that. However, the hospital where we planned to give birth did not. After a long process (which we’ve started to document on our blog) we did manage to get them to agree. However, as we discuss in our post 'On Winning', this was not the end of the conflict. Relationships had broken down, and while Rumer was in the neonatal unit, we ended up in a dispute with staff. It was at this point that the medical mediation service got involved, and it remained involved for the rest of Rumer’s life and also after her death.

What was our experience of medical mediation?

Mediation got involved with us in order to settle a dispute between the neonatal nursing and medical teams and us about reading Rumer’s notes. We did successfully resolve this issue with their help. The team remained involved throughout Rumer’s life, partly because her case was so controversial, and partly because relationships between her medics and us had been at rock bottom since before she was even born. They helped, for example, when Rumer was admitted to paediatric intensive care, when we had disagreements around the plans for her nursing care and when we were beginning to consider long-term home ventilation. They also remained involved after her death, attempting to resolve the ongoing issues between the medical team and us around Rumer’s care.

What is medical mediation? And what is the point of it?

Mediation aims to enable parents (or patients) and their medical team to understand each other’s perspectives and, if possible, for them to reach an agreement about care that is mutually satisfactory. Mediation breaks the communication deadlock that often occurs when relationships have broken down; even if agreement cannot be reached, it may improve relationships.

The hope is that both parents and the medical team will have a more positive experience of the case, the child will be moved back to the centre of focus, when often they have been sidelined by the dispute, and it should reduce the incidence of complaints and litigation which are both emotionally draining for everyone and costly for the NHS.

How does medical mediation work?

Mediators may work in different ways, but in our case, the plan was for the mediator to meet us individually so we could express our point of view, then to meet with the medics/nurses as a team to understand their point of view, and finally for us all to meet together with the mediator present. The mediator would manage the meeting, ensure the focus remained on solutions, and support both sides in expressing their points of view.

Did medical mediation work? Does it always work?

From our perspective, it worked well for the issue the mediation team first became involved with (reading the notes). However, as the solution was simply to permit us to read the notes, provided we did so without other parents being aware, I am not sure it was a ‘mutually satisfactory’ resolution. In fact, I wonder if it caused relationships to break down further, since maybe from the perspective of others, we had ‘won’.

As with all mediation (such as that which divorcing couples undergo) there are certain pre-requisites for it to work well. The main one is that both parties must be willing to engage and work towards a mutually-satisfactory agreement. If either side see mediation simply as a way to get what they want, it will not work.

What are the good things about mediation from a parent’s perspective?

  • It is helpful to have a neutral third party to vent to, and to explore your point of view in a safe environment.
  • It can reduce the power imbalance between you as parents and your child’s medical team.
  • If everyone is willing, it can build relationships and understanding between the medical team and yourselves.
  • It can avoid the expense and extreme difficulties associated with a court case.
  • At times we had a very positive relationship with the mediator involved in Rumer’s case and she was able to share our perspective with Rumer’s team informally.

What are the drawbacks of mediation, from the parent’s point of view?

Mediation teams are usually funded by the hospital in which they work. This means they may need to impress those who determine whether they will continue to fund them. This can lead to bias towards the medical team.

Mediators are influenced both by the medical team and by you: they may not have an entirely neutral perspective. In a high-profile case, they enter with the same preconceptions as anyone.

Sometimes medical teams invoke mediation simply as a way to get the parents to agree to their care plan, or to demonstrate reasonableness before heading to court anyway. It could be that they are not willing to consider any option other than what they want. In these circumstances, mediation simply cannot work. The same is true when parents are not willing to make any concessions. We were in this situation ourselves: there were aspects of what we wanted for Rumer on which we were not willing to compromise. Had we attempted mediation on these issues, it is unlikely to have succeeded.

Would we recommend medical mediation to other parents in our situation or a situation like that of Charlie Gard’s parents?

I would cautiously recommend it in certain circumstances, as follows:

  • It is regarding an issue about which you are willing to compromise;
  • Relationships with your medical team have not yet entirely broken down and you trust them to at least engage with the process; and
  • You like and trust the mediator and feel able to work with them.

I regret that we delayed engaging with our mediation service. By the time we used them, it was a last-ditch attempt by Rumer’s medical team and us to come to some kind of solution about one issue. Relationships were already destroyed and there was no trust between them and us. Perhaps if we had engaged them earlier, mediation could have promoted more positive relationships between us and avoided some of the difficulties we encountered.