It's never about giving up

Palliative Care. It's been in the news a lot this week.  And as I've seen yet another case of a child who needs a referral to palliative care being played out on social media I realised how little people really understand by the term.

All this week I have seen the negativity associated with the words and it has shocked me.  Because the perception that those people on social media had on social media bore no relation to the reality we had experienced.

We knew from the beginning that Daisy was life limited.  That she would not reach adulthood.  She was born with a sporadic gene mutation that increased her risk of cancer, sudden cardiac events, complex disabilities.  We know that many of the children with the same mutation do survive to adulthood, there are some who are in their forties even.  But Daisy was always going to be different.  She seemed to have an extreme form of the syndrome, potentially a secondary undiagnosed syndrome at play.  It was clear that there was too much going on and too much need for constant medical intervention to be conducive to a long life.

Andy and I accepted that from the offset.  We knew our time with Daisy was finite.  We were just determined to make the most of our finite time with her.  And that's where palliative care was so important.

Daisy was referred to the hospital palliative care team when she was seven.  I, like many others, assumed that palliative services were only brought in at the end.  I now know so much more.  That early intervention by palliative services was crucial, it contributed to ensuring that we were able to focus on Daisy's quality of life.  In fact the words used regularly by the consultant caring for her were "symptom control".  Daisy's pain was getting out of hand, she was on so many drugs it was difficult to know what was a drug side effect and what was pain.  With the help of the palliative consultant we were able to wean Daisy off some of her drugs so that we could identify which were the most effective in treating her pain.  A symptom care plan was developed so that everyone caring for Daisy understood what medication and doses were available and how to escalate them.

Some nights at home when I struggled to control Daisy's pain (her pain was always so much worse at night) there was always a member of the palliative team on call who could advise me.

We discussed our priorities for Daisy.  Optimising her time at home, minimising her time in hospital, maximising her quality of life and preparing plans to ensure that when the time came we would know and we would be able to support her in having a dignified death.

We made it clear that we wanted to ensure that Daisy was able to do the things she wanted to do; go to school, spend time with her family, be a little girl.  With her team we decided that as the window of Daisy being able to do the things she wanted to do closed we would constantly assess the situation.

I look back now and we did exactly that.  Daisy's deterioration was slow but it was obvious.  She lost the ability to walk, she developed severe seizures, her ability to communicate was reduced, she became more and more lethargic but this happened very slowly over a prolonged time frame and with the help of the pallitiative care team both at the hospital and the hospice we were able to support Daisy and optimise her quality of life.

Any procedure, test or surgery was always decided against the main criteria; "Will this improve her quality of life".  She had a couple of big surgeries in her final years, I know that there were discussions at an ethics panel about whether it was right to put her through more major surgery.  In the end we took the risk, her final surgery, while Andy was still alive, made a huge difference to her pain and we were glad that everyone agreed it should go ahead.

We talked about end of life plans.  These were always very open, frank discussions.  The doctors could not give us answers about when she would die or how, they did not know themselves.  She was always defying the odds, she would be overwhelmed with sepsis and we would prepare for the worst and then she would turn the corner.  We knew what all the options were however.  We allowed ourselves to think of the end of her life so that when it came we would be prepared and know what we wanted for our girl.

The irony was that those conversations with the palliative care team were even more important because it enabled Andy and I to be on the same page about how we would support Daisy when she was at the end of life stage.  We both agreed that we would not go down the route of a tracheostomy for her if that was the only option, she was already dependent of 24/7 intravenous nutrition to live and had four other stomas beyond her double lumen hickman line.  At least after Andy died of cancer just before Daisy's 11th birthday I knew that we were both in agreement and these things had been discussed.

Daisy's health deteriorated rapidly after Andy died.  That window of life quality I had discussed with our consultant was closing.  I remember the Christmas before she died, I just wondered how much we were now playing God.  She was struggling to keep going, her frustration was manifesting in challenging behaviour, she was becoming tired, she was losing more and more of her skills, we were losing Daisy.

When Daisy was taken into intensive care overwhelmed with sepsis it was still difficult to see that this was the end.  We had all seen her turn the corner from this point so many times.  But this time was different.  Everything the doctors tried did not work.  They had worked before.  She was struggling and exhausted.  She was sedated and a breathing tube was put into her lungs and she was attached to a ventilator.  I hoped that it would allow her body to rest and fight the sepsis.

But then her heart stopped beating and as I ran into her cubicle to see the doctors performing CPR on her I knew that I had to let her go.  I knew Andy would say the same.

I asked the doctors whether we could transfer Daisy so that our hospice team could come and switch off the ventilator at home.  I knew from previous conversations around end of life plans that compassionate extubations could happen at the hospice so why not at home?  But she was too unstable, she risked  dying in the ambulance en route.  This was not what I wanted.

The doctors successfully started Daisy's heart again but I knew that she was gone.  They talked to me about starting dialysis, about other life support interventions but I knew that our window had finally closed and it was time to say goodbye.

 I let my girl go.

It was the hardest thing I have ever had to do but I know that despite the fact that we were in a hospital, in a highly medicalised setting, we gave Daisy a good death, she was surrounded with love, we had given her everything we possibly could, we had left no stone unturned in ensuring she had the best life possible.

Our palliative nurse was with me when Daisy died.  We had known her for many years.  She helped the other nurses remove the medical equipment, she liaised with the hospice and the undertaker, she knew what to do .

Daisy's palliative consultant cried.  Just like many of the nurses and doctors who had cared for Daisy over the years they had got to know the little girl beyond the patient and they were as devastated as we were.

Daisy was moved to the bereavement suite on the ward and nurses came in and helped me wash her.  That evening we went home .  Our hospice nurse had set up a cold mattress on Daisy's bed and when the undertaker arrived they tucked Daisy back into her bed for one last time.  She was home.

Palliative care gave my daughter a good death.  It gave us options.  It gave us support and most importantly it gave us the gift of time with Daisy.  I accepted her life was limited, deciding to no longer pursue active treatment unless it was to enable her to have a good quality of life was empowering.  It was never, ever about giving up.

I have shared our story because I have realised that there are so many misconceptions about children's palliative care.  The reality is sometimes there is no cure and children die,  sometimes doctors do not have all the answers, sometimes medical science can only go so far.  It's about time we had more open conversations about these issues.


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