When my time comes....
Frank Booth, RGN (Retired)
We WILL pay taxes and we WILL die. Death comes to us all.
Naturally, those under the age of employment and the unemployed may not pay tax at the moment, but I think that I pay enough tax for them too. As a nurse at any level I suppose you also feel that you pay too. A lot!
So, I suppose the only true guarantee then is that you will die.I have been criticised by some as being morbid in my thoughts, I believe that this is not so, I simply am being practical. Of course I do not want to die but I know that I will.
This article does not consider whether you are a person of Faith or no Faith, it's not about that, more a practical approach to living. I believe that my approach is right; I believe also that every individual has a right to have or have not an opinion on the subject matter, so I ask you to understand my approach and accept it.
I am neither in favour of or anti euthanasia; you need to make up your own minds on this tricky subject and although I can be opinionated I can see the rights and wrongs of both sides of the arguement. Ultimately in the UK it is illegal to take a persons life, so most people who are in favour may choose to go to a clinic in Switzerland. Could I do that? I just don't know.
In 2008 the Department of Health (DH) conducted an end of life survey which identified that in England we find that;
58% of people died in hospital
18% of people died at home
17% of people died in care homes
4% of people died in a hospice
3% of people died elsewhere
This is what I think:
Prior to a catastrophic illness some 7 or so years ago I probably didn't consider end of life decisions. And I am sure that most people don't really want to think about dying, yet today in any NHS establishment there are posters asking/telling us about choosing where we want to die. Honestly, I don't know I want to talk to anyone about it as a ‘place’. For me, the business end of dying is the scary bit; I can tell you what I don't want, but I'm not sure that I know what I do want! Does that make sense?
Putting your wishes into the fire of everyone's mind is no bad thing and can be useful especially when you appear to have time to make decisions. A trawl through http://www.dyingmatters.org reflected my idea about forward planning, suggesting that a good checklist should consider the following;
- Legal and financial issues
- Organ Donation
- End of Life Care
- How you will want to be remembered
- Funeral Plans
Perhaps the most conscientious and effective end of life care providers of constant excellence are the Hospice Movement. Perhaps we should consider the Hospice model as a good source for guidance.
When the time comes for someone to die, it can become quite obvious but to some people signs may be missed. If end of life care is provided at home, then it probably means that the care provider, often husband/wife or child will have to out their lives on hold. Some people seem to ‘choose’ the time of their death, some appear to wait until their relative leaves their bed side. Death can be a strange thing. I have experienced this with my wife so I think I know why, but in reality who knows?
What do I want?
A couple of years ago I bit the bullet and thought about the end of my life; I needed to address my fears and concerns, but also make provision in case the end stages robbed me of my ability to communicate.
So what do I want? Firstly I must stress that I DO NOT WANT TO DIE, but there is a certain practicalities that need to be faced. Here goes;
- I have heart failure; you all know your physiology, you know the inevitable result of heart failure. Personally, I don't want to drown in my own fluid. To this end, I have asked my heart failure matron that should she find me in this predicament, she should inform the hospital or community staff of my fear of ‘drowning’.
- Resuscitation; I have had the conversation with my family, my next of kin about resuscitation. Before anyone starts hooking me up to any kind of machinery, I want them to ask (assuming I can't!), “is there a way back from the condition that I am in”? Often a difficult question to answer. But I implore you to be brave, for me and others, we deserve this from you. I'm sure all nurses know realistically if the person is dying. Will I sue you if you get it wrong? No because I trust that you make a comment in my best interest and the best interest of my family. I have instructed my next of kin to insist on a black and white answer, not the wooly "well you see it's difficult". I know it is difficult, how do you think me and my family are feeling?!
- Please allow us the dignity of a reasonable death, keep pain to a minimum, help me to breath, give me a drink if I can take it, or keep my mouth moist and keep pain as far away as possible. In other words, keep me as comfortable as you can and in a manner that you would want for your own mother, father or child or indeed yourself - there is a time to live and a time to die, dignity has to be the key
Having experienced Marie Curie and Hospice Care personally for my wife, we really did appreciate their compassion and understanding of all staff and volunteers. This seems to be a unique perception. Where ever we receive end of life care your patient and their family WILL look to you for support.
Help patients and families to understand what care you are giving
Help patients and families to understand what care you are NOT giving
What changes actually mean
Don't be frightened to be positive with the patient and family.
NHS England’s "Actions for End of Life Care" 2014-2016  is a good read if you can cope with 28 pages of end of life care. I found the first line, credited to Dame Cicely Saunders (1918-2005) so poingnant. She says;
"You matter because you are you and you mater to the end of your life.
All I want from you my future carer, is that you look after me when the time comes, you look after my family, smile at them to show that you understand me and my wishes. Please do not be afraid to talk to me about my death, don't dwell on it. This is what I want.
Having got the death thing off my chest now I put to you the importance of living!
Just because you have a catastrophic illness or a terminal condition it is important that you make the most of the life you have.
To complete the practicalities, I have put together all of my papers, I have sorted bank and building society and made sure that I have a current will. My insurance policies, credit cards, passport, driving licence, pensions etc., etc. are all listed with telephone numbers, as is what to say to all the people who need to be informed. My TV licence and broadband will need to be cancelled but not for a little while because you will need to link all of my email contacts and send to all a brief statement and who to respond to if they want to! I have discussed with my family the funeral arrangements and paid ‘up front’!
Now all the paperwork is done, I can get on with living.
I want to live and enjoy what I hope will be a long time. My future looks quite bright and I can live it.
if you are given the opportunity to look after me or people like me then be brave and strong for us, Help our families to make the most of the time they have with us, please do not be miserable for or with any of us.
Life is to short to be miserable, enjoy every minute that we are given.
Before anyone starts hooking me up to any kind of machinery, I want them to ask (assuming I can't!), “is there a way back from the condition that I am in”?