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Thursday, 12 May 2016

The Big Conversation: Thinking about dying won't make it happen! - Dying Matters Awareness Week 2016

Dying Matters Awareness Week 2016

The Big Conversation 


We all have wishes, preferences and we know what we want. We make our own choices, we decide what we do and when, we make our own plans for our lives, we choose which job we do, where we live, where we go on holiday, who we’re with, we choose our friends, we do the things we enjoy, throughout life we choose what we want and don’t want, what we like and don’t like, what we do and don’t do; we have total control of our own lives. Our whole lives are based around our wants, needs, wishes and preferences and our plans and ideas for our lives, and we continuously make choices and decisions based upon these. 

So, why go through life being in control and making all your own choices only to let the end of your life fade into the background, never to think about it? Never to make sure that what you want and don’t want, where you want to die and when you would and wouldn’t want treatment is what happens, even if you can’t voice this for yourself at the end?

Why don’t we talk about and, better still, formally write down our wishes, preferences and whether we’d want treatment or refuse treatment and in what circumstances? Make an advance care plan, write a statement of wishes and preferences, make an advance decision about your care, and/or appoint a lasting power of attorney, someone we trust and who knows our wishes to speak for us, all of which come into play if we come to a point where we cannot speak for ourselves or don’t have the capacity to make decisions. (see Mental Capacity Act).

Remember, thinking about dying won’t make it happen. However not thinking about it won’t stop it happening either. Not thinking about death and dying, not talking about wishes with family members and professionals and putting your wishes down on paper could potentially mean that the end of your life could happen in a place not of your choosing, that you may be cared for in a way you wouldn't want, that you could receive treatments and be kept alive when you wouldn’t want to be and that your wishes for the end of your life and for your death would go to the grave with you, having never been expressed. Not having The Big Conversation with those around you and not documenting your wishes in writing could mean that the end of your life and your care and treatment will not happen in accordance with your wishes. 


Dying Matters, the coalition of charities behind DM, other charities and people like myself supporting Dying Matters Awareness Week all want to get people talking about death and dying and hopefully show them the importance of documenting wishes. You don’t have to be dying to talk about death and dying, or to make an advance care plan or statement of wishes and preferences, and you can change your plan and wishes as many times as you like. It’s your plan after all, and you need to be happy with what is in it. If we all made an advance care plan, and we all made a will, wouldn’t death and dying be much less of a stress and strain on ourselves and those we leave behind? To know that your wishes would be carried out and the end of your life to be exactly as you want it to be must surely put people’s minds at rest? It means then that you and your loved ones can go about life not worrying about death because everything is in place for when the inevitable happens, whatever the circumstances and whatever your age. 


Death and dying is not a taboo in our house. We frequently will talk about it, or will mention something in passing like we’re talking about the weather. We also joke about it, but not in a morbid way. We cannot afford to bury our heads in the sand. We don’t have that luxury. In order to come to terms with death, we have had to accept, normalise and take the fear and taboo out of it. My condition isn’t terminal, but it is life-limiting - that is to say it will limit my lifespan - and we will never get a “you’ve got x months/years to live” conversation because no one knows. I don’t have a condition as well understood as cancer. Also, my condition isn’t normally life-limiting, so there’s no benchmark to go by. I could have only a few years, or a number of years, or if I’m lucky, a decade or two. No one knows. However, that’s true of everyone. The old saying goes you could walk out of your house and get hit by a bus, or more likely, develop an illness or suddenly have an acute event, or have an accident, any number of things could happen to you at any time of your life that could mean it is cut short. Or you could be lucky and become an octogenarian or even centenarian. That’s the thing, death doesn’t discriminate. It doesn’t care how old you are, how rich (or poor) you are, what you do with your life, where you live, how many children and family members you may have depending on you; death simply doesn’t care. We all hope we will live till we’re 80 and die peacefully in our sleep having lived a good life, but there’s no guaranteeing that. So why don’t people plan for the end of their life so that, whatever your age and whatever the reason, when you reach the end of your life, it is your wishes that are paramount and will be followed. Likewise, why don’t we all head to a solicitor and make a will, get our affairs in order, so that death doesn’t leave our families in turmoil over what we’d want and what will happen to our ‘estate’. If you’re not able to talk about it, how will you ever make your wishes known and put them down in a plan and to make your will? If you don’t talk about it, how will the taboo ever be broken? It’s not a pleasant topic, but often people find writing their wishes therapeutic, and a huge relief that everything is formally written down, so then they don’t have to think about it anymore and can get on with their lives. Death will happen to all of us, and we need to start thinking and talking about it. 

For me, I haven’t made a will. I really should. However I have talked in great detail about my wishes with my family, I’ve put them down in my advance care plan, I’ve written down how I want my funeral to be, I’m even planning and creating my own digital legacy in the form of blog posts and a legacy video (see the “Rest in Pixels” BBC Three documentary for more). I want to make my death as easy as possible for my family; I can’t stop their pain, I can’t lessen their grief, I can’t do anything to change how my death will devastate my family nor can I reduce the emotional toll it will take on them. However I can put my affairs in order and have my wishes in writing so that the physical strain is lessened, that they aren’t burdened with worrying about what I’d want and what to do at the end of my life, my death, and beyond. That I can make easier for them, and that is what I am doing. 


To give you an idea, one of my wishes is that I want to die in my own home, surrounded by those I love, Molly by my side, in my own bed and where I am comfortable. If that wouldn’t be possible, I would want to go into a hospice; I am terrified of dying in hospital as it won’t be as peaceful or comfortable and I probably wouldn't get the 1-1 care I will need as nurses don’t have time, and I worry about symptom control knowing how long it takes to get pain relief and antisickness on a general admission. I just really don’t want to die in the cold, clinical environment of the hospital. That is my choice. My preference would be that I will be cared for at home wherever and for as long as possible with any of my care, not just at the end of my life. I want my symptoms controlled but managed in such a way that I am not completely sedated where this is possible, to maximise the last weeks of my life; though I appreciate much of my time in my last days or even weeks may be spent asleep, I’d still want to be aware and able to interact for as long as possible. Then there is the funeral document I have for my family, with all my music and wishes in that, and I will have my digital legacy blogs and my legacy video that I will complete and that are to be posted/uploaded after I’ve died, and my family know to keep my social media pages and website online as that’s also my wish. 

Talking about dying won’t make it happen, but making formal plans for end of life care and treatment and making a will means you won’t have to think or worry about the end of your life and can live life to the full. 

#YOLO - You Only Live Once; but don’t forget, You Only Die Once, too. #YODO  


So please, have The Big Conversation with those you love and make formal plans to ensure your wishes will be met: in life, and in death. 


About Lucy Watts MBE


Lucy is a 23 year old young adult with a complex and life-limiting condition. Lucy writes, speaks, appears in videos and in the media, proof reads, reviews grant applications and other work for various charities, and works with seven charities on a long-term basis. Lucy was appointed MBE in the 2016 New Years Honours for services to young people with disabilities, which she received at 22 years old. She describes herself as determined, self-motivated and an overachiever. Lucy views her life as "glass always full" and appreciates all she has. Lucy has her Assistance Dog Molly, whom she trained with help from the charity Dog A.I.D. Lucy and Molly do all they can to raise awareness of Assistance Dogs and of the charity, Dog A.I.D.
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