Our work at The Medical Mediation Foundation is focused on two things: helping to train multi-disciplinary groups of health professionals to recognise the triggers and warning signs of conflict and supporting parents and health professionals by offering mediation to help restore communication and trust if it has become strained or broken down. The following article has been written by the mother of a baby born with a rare genetic condition called Trisomy 18 (also known as Edwards’ Syndrome) and describes the impact on all those involved if conflict arises. Sarah Barclay
“While we do not all agree that this is the right course of action, as a consultant body on the neonatal unit, we have decided we can offer Rumer resuscitation as we would any other child.”
Winning! It should feel good. That is how you imagine it when you are caught up in what you and your ‘opponents’ see as a battle. It is you against them, and in this case the battle was over something more important than anything I’d ever fought for before: my daughter’s life.
My unborn daughter Rumer was diagnosed with a chromosomal condition called trisomy 18 when I was 23 weeks pregnant. Most babies with trisomy 18 are not born alive; of those who are, only a handful see their first birthday. Because of this high mortality rate, in the UK, full resuscitation and other treatments such as cardiac surgery, ventilation etc. are not offered to these children. They are left to die. Emerging evidence however suggests that treatment does improve the chances of survival. We knew we wanted full treatment for Rumer, and we walked into our first appointment with the neonatal team prepared for some opposition.
And we got it, in spades. All the arguments we had anticipated and more came out. Quality of life, pain and suffering, the child’s best interests, futility. It was full-on assault and we reacted, we played the game. The slightly threatening but still polite emails to people with influence; the seven page submission for the ethics committee with lists of research; the legal advice sought but never mentioned; the second opinion from just the right person. And yes, we won, in that appointment with a new neonatologist they said yes and that should have been that.
Except of course it wasn’t. When you have been in a war and it ends, you don’t all shake hands and become best friends. Trust, if it was there in the first place, is lost. Peace is a fragile thing and both sides know it. We had won, but still as mere parents in a system which we can never fully understand, we were at a disadvantage; the power was not with us; this was a case of David overcoming Goliath. But if you’re David, you start wondering if Goliath has really surrendered or if this is just a ploy; if you don’t trust them then perhaps they are lying to you, perhaps this is a trick, a trap. You try and pin them down, push for written agreements, record appointments, insist on a letter from someone higher up, and maybe you get it.
On the other side, the losers of this war are already resentful that you won. There are internal squabbles they don’t want you to see, between those who agreed to the surrender and those who thought they should fight on. And you, the victors – the reminder of their loss – don’t just go away. They have to continue dealing with you, they have no choice. Not only that, but you are demanding more: all those agreements, letters; it must feel to them like you are rubbing their noses in their loss. You aren’t even grateful that they gave you what you wanted.
So with that history I gave birth to our daughter. A baby who nobody expected to survive all that long. But she did. Six weeks we spent in neonatal unit, and all that history between us and the neonatal team played out exactly as you would expect. Lack of trust leads to controlling, second-guessing, anxious parents. Resentments lead to a medical team that doesn’t want to give ‘special treatment’ and that wants to pretend the history doesn’t exist. Problems spiral. We end up in meetings over minutiae, over reading the notes; we can’t believe they want to make such a fuss about this; they can’t believe we can’t just trust them. We are at loggerheads.
Mediation gets involved and things get smoothed out for now, but resentments linger. We can’t wait to get out of there. Before we do, we get agreements from the rest of the hospital to treat according to clinical condition. Soon after that we leave; we don’t get the feeling of the staff are sorry to see us go.
Soon after that, sadly, we are back. We spend two weeks in general paediatrics, get home again but are back in four hours, and then another week in paediatrics, four weeks in intensive care and sadly Rumer dies on New Year’s Day 2016. The paediatric team never really questions treating Rumer, but old histories linger. These are our opponents’ allies: we question their motives and actions and they get tired of it; old patterns reassert themselves; even as we recognise it we have no energy to change it and neither, it seems, do they. Everywhere we go, it goes on. The ‘difficult parents’ and the ‘arrogant doctors’, same old story.
Winning it turns out is not all that great. It solves some problems but leads to others. Our memories of Rumer’s life are coloured by the aftermath of war. There shouldn’t have been a war. Our experiences serve to illustrate how an adversarial approach to communication leads to problems that don’t end when someone wins. There are going to be disagreements in healthcare, between patients and their advocates and health professionals. If when we had first disagreed, instead of opposition, there had been open discussion and listening, perhaps we could have reached consensus. Perhaps we could have all been on the same team, striving for the same goal.
In the end the actual goal – in our case, the best interests of Rumer – got lost in the fight between us and the health professionals. We fought a fight of treatment or no treatment and forgot that in the end we wanted the same thing: what was best for Rumer. Perhaps if we’d sat down and talked about that and not got sidetracked, we’d have realised that we were in fact in agreement on the principles and differed only in how we thought they should be implemented. Perhaps with open communication and discussion, exploration of the reasons behind our differing opinions, we’d have reached agreement. At least, hopefully, we’d have had more respect for each other, more mutual trust, fewer resentments.
Both sides have responsibility in a war and I acknowledge ours. We fought the battle because we felt we had no choice. To not fight it was unthinkable: we couldn’t let Rumer die for lack of treatment and I still feel the payout; those precious three months were worth the cost. But it was a high price. I am sure the health professionals too paid a price. In the end nobody won.
You can read more about Rumer’s story http://rumersrainbow.co.uk
I met Emmy Myerson and her family in 2003, when I was working as a reporter for the BBC Panorama programme. I wanted to make a film which showed what life was like for parents struggling to look after children with complex physical and learning disabilities. We called the film “Survivors” http://news.bbc.co.uk/1/hi/programmes/panorama/2636227.stm because that is what Emmy and many other like her are: when she was born, nobody expected her to live. In fact there were many occasions when her parents, Tussie and David, found themselves preparing for her death.
They always believed that her care should be focused on providing her with the best possible quality of life rather than prolonging that life at all costs. They asked themselves and others, difficult questions about the purpose of medical advances which can keep babies, children and young adults like Emmy alive without knowing what the quality of those lives can or will be. They found themselves disagreeing with health and social care professionals about what would or would not be in her best interests.
Above all, they had to fight a more or less constant battle to get care and support for Emmy; a battle which they and many other families like them, had little or no idea lay ahead when they brought their baby home from hospital alive.
The experiences of Emmy and her family were one of the reasons why I decided to set up The Medical Mediation Foundation. Over the years, during many conversations with her parents, I’ve understood something of what it must be like to feel that you have to be struggle to be heard by some of those responsible for the wellbeing of your child. And what the impact of that struggle can be for all those involved – including some of the professionals who have heard all too well but can’t respond in the way they would like to because of scarce resources.
Emmy died suddenly on 7th November 2012, aged 21.
Emmy’s Story: In Her Mother’s Words (with a postscript written after Emmy’s death)
When you give birth to a child whose life is going to be bombarded with medical complexity, you begin a journey that is impossible to be prepared for. For the first 10 years we simple existed. Every four to seven months she would have a bout of pneumonia and we would prepare for her possible departure. It was a staggeringly difficult time.
My eldest daughter, Emmy, was epileptic in the womb. This means that the abnormal foetal movements during the last two months of my pregnancy were actually epileptic seizures. She had her first seizure outside the womb at three months, followed by many months in hospital, before being discharged into my completely untrained hands.
Emmy has what the professionals call PMLD, profound and multiple learning difficulties. She is quadriplegic, with cerebral palsy and intractable epilepsy. She cannot walk, talk, toilet herself, feed herself, etc. She can communicate of a fashion by laughing, crying and smiling, but you cannot be sure that it is controlled. When she was 10 months old (1992) we were told by the wise and wonderful at Great Ormond Street that she would die very soon. If she didn’t die very soon she would die a little bit later. If she didn’t die then she would probably be a vegetable for the rest of her ‘short’ life. There was no counselling or support. We saw a geneticist who told us not to have any more children, and that was it. There was the usual gaggle of meetings with social services, who offered us residential care or possibly a bit of respite, but they weren’t sure. Our GP was very kind, but she had never had a case like this before.
For the next 18 months I had to deal with the hugely complex array of appointments, whilst having this dreadful thought in the back of my head that my daughter was going to die.
She didn’t. I stopped believing the doctors. I started believing in my daughter.
And yet no one believed in me. There was no joined up thinking. No early intervention, no support structure. No recognition of what that day at Great Ormond Street had done to us as a couple, or our little family.
When she was 4 we found Helen House Hospice in Oxford, and thanks to them many of these interruptions were made more manageable. We came to understand what life limiting meant. And how to come to terms with the fact that our gorgeous child was not going to live into adulthood.
Because of the nature of our daughter’s diagnosis we, my husband and I, decided early in her life that we wished her care to be palliative. To most people you will think of end of life hospice care. But for us it means whole life care. Which means that her life is about quality now, rather than using medical intervention to keep it going. Therefore we do not wish her to be tube fed, to be resuscitated, have intravenous medication other than pain relief, or any other intervention.
Her quality of life is about being able to make the very few decisions she can herself. This includes eating, which is under her control. And breathing. She and I have ‘agreed’ many times over the years that it is her call. She decides if she is going to wake up, not me. So far she has chosen to wake up.
When we first asked for no intervention I don’t think we fully understood what we were saying. It was more a reaction to what everyone was doing, given that they kept telling us she was going to die. So if she was then let her. But now I do understand. She should never have survived. For whatever reason she did. That does not make it right to keep that life going ‘just because you can’.
What a family like ours goes through is grieving for a very long time with the end never actually happening, and also caring. So two of the most stressful jobs wrapped up in one package. It appears to be taboo to admit how hard it is. As a society we don’t seem to want to admit to the hurt of watching our children live half-lives, quarter lives even. Does Emmy have a quality of life? I don’t know. Do I love her? Absolutely. Will I miss her? With all my heart. When she dies, will it be a relief? Without question.
Gradually you recognise that extending this life isn’t your call. You are simply a manager of a body. It is down to her if she wants to keep going. My job is to make sure she is comfortable. That she has a reason to smile when she can. That she is loved by her family, and at the end of the day that her family have the energy and capacity to love her.
Society now appears to be about extending life. Ticking medical boxes that enable life to be prolonged without necessarily asking the terribly important question. Who are we doing this for? Possibly it is for the people around me who do not understand what it is like to live with a time bomb. Because it is not for me, or my family. We have been through quite enough. And I cannot imagine it is for my daughter. What she has had to go through does not bear thinking about. So who else is there?
And why is it still taboo to talk about this issue. Why with an ageing population, and more babies surviving premature birth and birth trauma, is it still considered politically incorrect to tackle the really important and, lets face it, unavoidable issue, of who are we maintaining life for?
The question about quality of life appears to be overshadowed by the alternative of quantity of life. But whose, the disabled person or their family or someone else?.
I can only speak from the experience of my daughter. I do not know what it is like for anyone else. I would never claim to know. But I do feel that it shouldn’t be wrong to say what you really feel.
In the weeks that followed Emmy’s death I think her sister, Charlotte, summed up perfectly the real impact she had on life. ‘She was stubborn, bloody minded, willful and determined’. How someone who lacked the fundamental functions that we all take for granted can achieve that, is testament to what was going on in her head.
I continue to live in amazement that she kept breathing for such a long time, and whilst I am relieved that she is no longer in pain, frustrated or so dependent, I do miss the courage she showed and the single mindedness that she must have had to keep going.
No one can understand the full impact that a life like Emmy’s has on them until they have gone, and I am only beginning to come to terms with it. Good days bad days.
As a family we developed a very strong, if dark, sense of humour. It was the life boat that kept us floating. And when I think of the things we laugh about, I think of Emmy’s hearty throaty chuckle that would appear, often at the least appropriate moment! To think that I was her voice is scary, because she must have often thought ‘no I don’t agree with you mum…that isn’t what I want at all…’
I had to believe I was making the right decision.
We are all finding ways to miss her and celebrate her. Some are sadder than others. But it is our successes with the wars that have been fought that are the constant reminder that her life was not a waste of time. We did see change. The only sadness is that it was not enough, and that families are still facing some of the most unbearable and unacceptable fights. And these will continue.