I don’t want to be a burden. I don’t want to have any artificial support to prolong life when there’s no quality of life left.
People to have to deal with things that haven’t been sorted out by myself in terms of general affairs, something as simple and straightforward as passwords on computers, right the way through to financial situations.
If anything happened to my brother, my sister or my two nieces, I’d just go to pieces.
Most importantly would be for me to lose my dignity. I’m not ashamed to say I’m quite glam. I like to look after myself, my hair and nails and makeup and things like that and I’d hate to lose any part of that.
The idea of being in a hospital situation or an inconvenience to my family would be the worst things that could possibly happen.
There are amazing human stories of people coping with disability and stroke and all of those things but I’d still want to have a quality of life where it was still me, it wasn’t fundamentally a different person and I wouldn’t want to have a massive burden of caring responsibilities.
I would not want quantity of life versus quality of life. Quality of life is very, very important.
My main fear is that of unintentional or even intentional interference with my advanced decision.
The risks of it are quite great by people not being aware that one, it’s in existence and two, the wrong people have access to it.
The thought that I wouldn’t have choice in the future, that decisions are made on my behalf, that would just drive me round the bend.
Being diagnosed with a serious long-term illness or living with chronic pain.
It is not to be able to make decisions about my care if my health or mental welfare deteriorates.
This may not always be possible, so preparing my advanced care plan and sharing it with my son and daughter is vital.
I just don’t want to be lonely.
I’d hate the decision about my health to be taken out of my hands.
We talk very much about person centred care and I work for Marie Curie and we really do push that agenda.
It’s not about us making decisions on somebody else’s behalf, it’s about involving them as much as possible.
Losing my independence, that is my biggest fear.
Where I live, what I do each day, if I can’t make those decisions I would hope that somebody would take into consideration my family, my friends and all the thoughts that I've written down.
I wouldn’t want to die too early with a lot of energy still left in me.
I definitely wouldn’t want for my children or family to be burdened with uncertainty about what was important to me and what mattered most to me.
