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

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