Make 2020 the year you write your Living Will

I love lists. Ask my children. There are lists everywhere in the house. On the blackboard in the kitchen, on the whiteboard in my office. Christmas sends me into list frenzy and our family group chat goes into warp drive as I share my to do lists with the kids.

I end my work day with a list in my project book and every year I write down the things I'd like to achieve. Not resolutions, but things I'd like to do....like the cycling holiday to Jordan I've just booked, it's been on my list for a while....

But, because I'm a woman of contradictions, I'm a procrastinator too, and sometimes things stay on my list for a while...I know I need to do it...updating this blog has been on the list for  while ...along with the great big elephant in the room.

I need to write my Advance Decision document.

These days much of my time is spent talking to people about talking.  About having difficult conversations, about sharing plans and opening up and talking about the most taboo of subjects...death and dying.

I share openly my own experience of caring for my life limited daughter Daisy, making plans and discussing with her palliative team how far we would go with medical interventions.  Similarly I talk about how we dealt with my husband, Andy's, terminal cancer diagnosis and how we prepared for life after he died, how he made me the legacy contact for his social media accounts and shared his passwords for his bank accounts...how we spoke about his wishes for end of life and medical intervention.

And I share how I was able to give both my daughter and my husband a good death; advocating for them at the end, knowing that we had discussed end of life plans. And despite Daisy's death being medicalised how I felt that at the end I made the right decisions for her and how I brought Andy home with the support of the palliative team for his final days......

I've altered my will as our circumstances changed, I've sorted out life insurance and I've discussed what sort of funeral I want with my children and which undertaker to use . I've made my eldest son my social media legacy contact and he has the passwords to access my digital life...

But what I haven't done, what I know I need to do, is formalised my wishes for end of life care.

Why should I?  It's not like I'm going to die anytime soon after all?

At this point I refer you to the title of my blog, because I know more than most that life can have an uncanny habit of throwing you off course, who knows what it has in store?

Celia and Jenny Kitzinger are sisters who, like me, also have a vested interested in encouraging people to open up and talk about death and dying.  We have found ourselves speaking at the same conferences and through them I have got to know the story of their sister, Polly.

Polly was a similar age to me when she was involved in a terrible car accident which left her with devastating brain injuries.  The family knew from conversations they had with Polly before the accident that she would have preferred not to have had the medical interventions that kept her alive, initially in a persistent vegetative state and subsequently in a minimally conscious state .  The family told the doctors who were caring for their sister that she would not want life-prolonging treatment but despite showing evidence through Polly's writing and letters that she would not want to be kept artificially alive, the doctors persisted with treatment.  And 10 years later Polly still needs 24/7 care and it's unlikely that she will ever be able to make a decision for herself again.

Jenny and Celia have campaigned tirelessly to open up the conversations about the need for everyone to make an advance decision and to communicate it.  In fact medical professionals are expected to talk to family and friends in order to make a "best interests" decision but it really becomes a lot simpler if there is an advance decision document in place, because it's something that you have thought of, when you had the mental capacity to do so, and most importantly, it's legally binding.

Because just telling your spouse, next of kin, friend to "switch off my life support if the worst happens" isn't as easy as you think, as Polly's case illustrates.

Until I had met Jenny and Celia I had always assumed that an advance decision or "living will" was something for older people, something that I should discuss at some point with my parents, along with who was going to be the lucky recipient of an extensive collection of crystal vases and seaside mementos. But now I know (as I should have realised) that everyone over 18 should write an advance directive if they have strong opinions about what they do or don't want to happen to them should the worst happen and they cannot speak for themselves.

I was lucky, cancer gave Andy and I time to discuss things, make plans , to think about resuscitation and end of life care but a sudden devastating event; a car crash, a stroke , doesn't give you that luxury.

So sorting out my advance decision document and getting it witnessed has been on my to do list all year.  Not long after hearing the Kitzinger's speak for the first time I was involved in a minor accident that left me with concussion and the realisation that I was actually not infallible or immortal, none of us are. The only guarantee we have in life is death after all.

So, what is an Advance decision and how do I make it?

It lets your healthcare team know your wishes if you are not able to communicate them. It's a legally binding document and informs your family, friends and the medical team with your wishes for refusing treatment if you're unable to make or communicate those decisions yourself.  You can find out more information about Advance decisions here.

Creating an Advance decision takes time, it involves difficult conversations with family members, and the need to really think about what you do and do not want for your end of life care.  I think that's why I've been procrastinating so much, it involves me going to a place that I encourage everyone else to go to, to think about my mortality and ultimately what for me constitutes a good quality of life.

Compassion in Dying have an excellent form on their website which guides you through everything that you would need to consider in drawing up the document and what to do once you have written it.

It's all relative, there are no rights or wrongs, no judgements, it's just about planning ahead and ultimately making things easier for those who are going to have to make decisions on your behalf should you for any reason not have the mental capacity to do so.

It's not something I will enjoy doing and hopefully it's a document that won't ever be used (but I will definitely be revisiting it to make sure it's still what I want) but it's got to be worth a few hours of my time.  If the worst did ever happen to me I would want to know that my kids have some guidance from me to carry out my wishes.

So if you are making a list for things you would like to achieve in 2020 here's my suggestions:

1. Sort out your legacy contacts and passwords for your digital/social media accounts
2. If you have children who are still in education or you have outstanding debts sort out life insurance
3. Write your will
4. Discuss your funeral wishes with your family
5. Fire up the Compassion in Dying website and sort out your Advance Decision (Living Will)
6. Decide who will be receiving the collection of whimsical figurines that you have been amassing since childhood.... (OK, this one's not obligatory).

Wishing you a procrastination-free 2020

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.

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

Talking about it doesn't mean it's about to happen

I know I talk about death a lot in this blog, but everyone who knows me personally also knows that I am the most optimistic, positive person out there.  Because I talk about death doesn't mean it's going to happen imminently,  it just means that when I die I will, as the British so quaintly say "have my affairs in order", as you can imagine my affairs are somewhat complicated so all the more reason to make sure they are in order.

Death and taxes, they are the most inevitable things about our life on earth.  Yet people who will easily visit an accountant to manage their tax affairs would not consider going as easily to a solicitor to sort out their will.