Dying Matters Week 2019 – Are We Ready? Our Short Films

May 18, 2019
Lucy Watts MBE
advance care plan, Advance Decision, advocate, artificial nutrition, awareness, awareness week, bereavement, BLOG, care, care planning, Carers, communication, complex needs, continuing health, cope, coping, death, deterioration, diagnosis, digital legacy, disability, DNACPR, Dr Kathryn Mannix, Dying Matters, end of life, family, future, grateful, grief, health, healthcare, hope, hospice, Hospice UK, hospital, illness, life expectancy, life limiting, life threatening, loss, love, mother, mum, nurse, nurses, nursing, pain, palliative, palliative care, patient activation, patient experience, personal health budget, personalised care, quality of life, rare disease, sepsis, TPN, unpaid carers, young people
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This week it has been Dying Matters Week 2019; 13th-19th May. The theme this year was “Are We Ready?” and what a great theme it is, as we really aren’t ready and we need to be. Dying Matters Awareness Week is all about thinking about death and dying; talking about death and dying with family member, friends, professionals and others; and making plans and preparations for your own death.

We, as a society in Britain, don’t like thinking or talking about death and dying. However, has anyone noticed that life has a terminal prognosis? You all pretend you’re not dying but you’re dying from conception onwards – death happens at all ages and stages of life; some babies die in the womb including some who are miscarried only weeks after conception, children can die in the first few years of life, children can die at any age, adolescents can die, young adults can die at any age, middle aged people can die at any age, and elderly people die too. We are all going to die at some point. Life, it can be said, is itself a terminal condition.

This year I produced a range of videos to contribute to and support Dying Matters Week and to challenge friends, family, colleagues, supporters and so on who are present in my life, as well as others who may stumble upon my website, my work and/or my social media, to think about death, talk about death and dying, and to plan for it – since it’ll happen to all of us at one stage or another.

My family are very adept at talking about death and dying, as we have had no choice. I’m dying – I’m living on borrowed time, I shouldn’t have reached my 18th birthday, then I shouldn’t have lived to see my 23rd birthday, and yet here I am at 25 with a lot of living yet to do! I found out at 17 – after professionals skirted round this “difficult conversation” for a very long time – that my lifespan would be drastically shortened and I wasn’t expected to survive to my 18th birthday. However, I defied that prognosis and a year later, at the age of 18, was told I had “5 years, at the very most” left to live; based on my complications, multiple organ failure, and the unknown degenerative disease that was ravaging my body and threatening my life, that I wasn’t expected to live long and highly unlikely to survive to my 23rd birthday. Yet, here I am, 25 — and counting! We’ve been forced to think about death, talk about death, face death, live with it and make an acquaintance with it due to its constant presence in my life. We’ve had to choice. So, we are able to talk about it; but what about society? Almost everyone shies away from death and dying, making it a taboo, a “he who shall not be named” of the real world, and pretends it isn’t happening and won’t happen to them. Newsflash – life has a terminal prognosis, life itself is a terminal condition. So why not start facing your fears, talking about death and putting things in place to ensure your wishes will always be followed?!

This week we’ve made a variety of videos, some serious, some funny. We hope you will enjoy them all, they’re embedded in this post but I’ll also link to the YouTube playlist which you can access by clicking this text.

Please do like, share and comment the videos I post on my social media and the videos on YouTube, I want to ensure they reach as many people as possible to help raise awareness of death, dying, Advance Care Planning and Dying Matters; empower and challenge them to think and talk about death; to have conversations with family, friends and professionals in their lives; to ensure their wishes are known; and to inspire them to do their will, and do an Advance Care Plan of any desired form, be that simply writing an Advance Statement declaring their preferences for their life, care and death, or taking steps to do other documentation like the Advance Decision to Refuse Treatment [also known as an Advance Directive or “Living Will”], and/or a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR, also know as a DNAR) if this is applicable to you, especially something to consider if you have a life-limiting/threatening condition and/or are elderly and would not want CPR; and help them accept that our lives are finite and to live life to the fullest as you never know what is around the corner, everyone is one step away from illness and/or disability, including life-threatening illness, as illness does not discriminate, it doesn’t care who you are. Make plans, have the conversation – then get on with living!

Here are our videos, we hope you enjoy them (yes, I managed to rope mum into letting me film her!).