My speech to the Institute of Medical Ethics

A few weeks ago I was invited to deliver a memorial lecture at the Institute of Medical Ethics.

For the benefit of those who were unable to attend, here it is:

In January 2017 my daughter Daisy was admitted onto the intensive-care unit at Great Ormond Street for the last time.  She was put on a ventilator and it was clear that she was septic and her organs were beginning to shut down.  She had a cardiac arrest as the physio therapist performed a bronchial lavage in an attempt to identify the bug that was causing such havoc.  I walked in on the crash team working on her.  

It is possibly the worst thing I have ever seen, my little girl, just a few weeks past her 12th birthday, limp like a rag doll as the crash team performed CPR.  They brought her back but it was clear that this time, unlike all the other times, Daisy was not going to leave PICU.  Doctors and nurses worked on her constantly.  The consultant took me to one side and told me what I already knew, the Daisy I knew would never come back, there were options, they could start dialysis, they could keep resuscitating but the outcome would be the same, all it would do was buy time.  I already knew the answer.

“Let her go” I said “it’s her time”
I asked the team caring for Daisy to just keep her heart going long enough for her brothers and sisters to get to her bedside so that they too would know we had done everything possible and they could say their last goodbyes.

I also asked if it would be possible to move her home for a compassionate extubation or failing that the hospice but I was told she was too unstable to move and it would be safer to do it on the ward.
So, once my children had said their goodbyes I nodded to the intensivist and the machines were switched off, the breathing tube taken out, Daisy took two breaths and she was gone.  I climbed into her bed for one last cuddle and kissed my darling girl goodbye.
On the other side of the ward was another child for whom there was also no hope, he had an incurable, life threatening degenerative disease too.  His parents were beginning what ended up being a very public conflict with the team treating their son and they refused to stop mechanical ventilation without further investigations…

His name was Charlie Gard

What is it that lead me to know that it was time to let my daughter go, to give her a good death? Why did I know that I had truly left no stone unturned whereas another set of parents of a terminally ill child were prepared to explore every possible avenue to extend their child's life?  To the point that they were prepared to go to court, to put their story out in public, to expose their entire lives to the examination of the media and social media?
Hopefully telling you my story will explain a little about how I was able to make the decisions I made in what is just the most difficult of circumstances.

Daisy was born in December 2004, a much wanted 4th child.  She was premature and soon afterwards diagnosed with a rare genetic disease.  The doctors were unsure about her prognosis and could not even say if she would live to reach her 4th birthday.
Looking back on that time several things happened that were clear tipping points in my attitude to the HCPs caring for my daughter and decisions I would make for her.
Very early on Daisy’s neonatologist, Ruth, became one of the most trusted people on Daisy’s team.  She was a similar age to me, with children of a similar age.  One day she took me into a side room for a chat, away from the ward, over a cup of coffee, I felt that I was talking to another mum who understood me.  She said that she did not know what was going on with Daisy but she would ensure that we all worked together to find out.  The fact that she didn’t have the answers didn’t matter, the most important thing was that she didn’t give me false hope.  She also regularly updated my GP.

The geneticist came in and the meeting with her couldn’t have been more different.  It was held on an open ward, where other parents could hear, she told me my daughter might have something called Costello Syndrome but as at the time there was no test we would have to wait and see but she would send me info.  And she left.  And I was left to google Costello Syndrome as info didn’t arrive, finding myself looking at all sorts of worrying and scary information and crying my eyes out.

A few months after Daisy left the neo-natal unit and once she had already make what was to become a life-long acquaintance with GOSH, we received a letter.  Ruth had referred us for hospice support and we had been accepted.  She had framed it not that Daisy was going to die but that we needed help to optimise her quality of life, we grabbed the offer with both hands.

The years went on and Daisy kept defying the odds, she spent her first birthday in hospital but was out for New Year and we had our fair share of blue light rides.  But in between we were able to get on with life as a family as Daisy slowly hit milestones and continued to surprise us.

The turning point came in late 2008, she was taken into hospital for what ended up being nearly a year long stay, ricocheting between GOSH and the local.  When she did come home she was TPN dependent and with a diagnosis of intestinal failure.  Now we knew the clock was ticking but life was still good.  We managed with the TPN and we still were able to do a lot.

However, it was clear that Daisy’s health was on a downward trajectory and she was needing more and more interventions and surgeries.  We were referred to the hospital palliative care team but again this was done very well.  It was explained that while we were certainly not at Daisy’s end of life she needed support to manage the complex symptoms in order to improve her quality of life.

The Palliative consultant help to sort out the polypharmacy that Daisy was now under, her drug chart had grown to seven pages and just administering IVs and infusions was a full time job.  Daisy had developed epilepsy and he had multiple catheters and stomas: ileo, double lumen hickman, gastro, jejunostomy, mitrofanoff…. but working with her teams we focused on keeping Daisy out of hospital and able to do the things she wanted.  Even though on paper her outlook appeared dire the reality was she embraced life with both hands.

We knew that this was not sustainable and we had conversations about end of life plans, discussions around compassionate extubations, how far we would go, all of these things before she hit crisis.

But our family was hit by another crisis.  In late 2014 my husband became very ill, very quickly.  He was diagnosed with stage 4, incurable colorectal cancer.
Now alongside my three healthy children, I was caring for my very complicated youngest child and a terminally ill husband.

In many ways Daisy taught us a huge amount about the importance of difficult conversations, how to talk about death and dying, how to work with medical teams collaboratively and what constitutes a quality of life.  For us this was never about the big things, or bucket lists, it was always about the simple things, being able to be home together as a family, sharing a meal, sitting on the sofa.

This was the attitude that helped us adapt to Andy’s illness.  We asked lots of questions, we wanted to know our options, in the same way that we did with Daisy.  We were Daisy’s advocates, we had to hope we were representing her best interests and speaking on her behalf while trying as best as a parent can to be objective, but Andy was able to speak for himself….in many ways it helped us understand our role in supporting Daisy too.

After a gruelling year of intense and brutal chemotherapy and radiotherapy we were told that there was nothing else that could be done and Andy had a matter of weeks left.  He was referred to the palliative consultant.  I wonder if the palliative consultant was shocked by our questioning, we had been working with a palliative team for many years by that point.  Andy needed facts and he needed to discuss what would happen at the end.  We discussed DNAR and where he wanted to die. A glimmer of hope was offered with a new treatment but it would only buy a few more weeks and Andy was too unwell, we knew that any further treatment would be futile and would only prolong the inevitable.

Andy died at home a week before Daisy’s 11th birthday and only a few days after his 53rd birthday.

That year following Andy’s death was so tough.  I was on my knees supporting my grieving children and caring for an increasingly complex little girl who was clearly failing herself.
Her 12th Birthday was difficult, Daisy was in a lot of pain and struggled to be out and about, something she used to relish.  I reflected over that Christmas about where we were with her.
By this stage she was on 24/7 TPN, all drugs were administered intravenously and this could take up a large proportion of the day, her catheters were permanently colonised with bugs, her epilepsy was increasingly drug resistant and the seizures had clearly damaged her brain and causing challenging behaviour.  She had undergone many many huge surgeries, all focused on taking things away, her large bowel, a chunk of her small bowel, moving stomas, clearing blockages and adhesions…her body was criss-crossed with the scars.

There had been a time where we had hoped for a new treatment that might have halted the progression of her disease.  We knew that a lot was going on in the US and we even made contact with doctors out there, just as the Gard family had.  We discussed the possibility of a small bowel transplant but accepted that she would never been accepted onto the transplant list as she just had too many other co-morbidities and risk factors in place.  Ultimately we weighed all of our decisions against what would give Daisy the best quality of life, did we want to put her through some traumatic treatment or procedure if it didn’t help her stay at home and do the things she loved?  Go to school, play with her dog, see her siblings?

It was hard having to be her advocate, having to make those decisions but in many ways I was lucky, I was an experienced parent, I had three older children already, I am educated, I was never phased in my interactions with senior medical staff having held senior roles in blue chip firms in a previous life.  Much as it was incredibly difficult I was able to try and bring down the emotional shutters, stand back and look objectively at the situation.
I had disagreements with medical staff but I also knew that collaborative working was going to give us the best outcome so I built strong relationships with HCPs I knew I could trust and could help advocate alongside me; our palliative consultant, our GP, Ruth…
I had been given the hardest job in the world, to advocate for and make decisions on behalf of a child, my child, hoping that I was doing the right thing.  I knew I had to put my own feelings to one side and take hers into account.

That Christmas in 2016 I looked at Daisy and wondered where we were going, her quality of life window was closing, the time she was able to enjoy herself diminishing as she spent more time in bed and unable to leave the house.  She was clearly not at end of life but she was not having the quality of life we had fought for.  Was I playing god every day when I put her TPN up and administered all of her drugs?  Yet she had some quality of life, and while there was no hope she would get better who was to say if she would get worse, she could be like this for a long time.

I struggled with those thoughts, watching my daughter deteriorate, Andy’s deterioration had been fast and predictable, Daisy’s, like many children with complex and life limiting conditions was circuitous and very much unpredictable.

I remember a junior doctor once commenting that when you got to this level of complexity it was all academic guesswork.  The only known was the outcome, she would die, we did not know where when or how but the way she was deteriorating she would not be reaching adulthood.  I struggled about how much we were intervening to keep her alive…after all if we just stopped TPN she would die and wouldn’t that be kinder yet the time was not right to do that.

Daisy, being Daisy took things into her own hands. Not long after new year I took her to our local as I was not happy with how she was doing.  Like most parents caring for children with complex needs I had a unique Spidey sense that things were not right….
She was transferred to GOSH and deteriorated very rapidly.  Nothing worked, fluid resus, sodium bicarb infusions, blood transfusions…she was taken into intensive care and she died on January 31 2017.

Afterwards I felt overwhelmed with a myriad of emotions, sadness, loss, relief…but I stand firm that the most selfless thing I have ever done in my life was to make the decision to let my child go.  Even though my arms still ache for one last cuddle I knew it was her time and I knew the time was right.

In the end I know we gave Daisy a good death.  And we gave her a good life, every decision was tough but it was measured in terms of her quality of life and what that meant and I tried my utmost to be objective and be her advocate.  I know that some of the conversations and support we received along the way really helped us do that; knowing that the HCPs working with us were humans to and were willing to share their emotions helped.  Knowing that they didn’t have all the answers didn’t give us false hope.

I know that I was lucky to use my privilege and skills to get to that point.  Like the Gards I used social media, I started writing a blog in 2008 when Daisy first deteriorated, but I only ever posted very curated content on the social media channels, I learned to only trust information from verifiable sources about potential treatments and I learned that to fully support Daisy I needed to work collaboratively with our teams. 

It was not always easy but I know that when it came to the end, like so many other parents, I did everything possible for my little girl.

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