Not many of us have, despite the fact most of us have clear views about what we may or may not want at the end of life. In a poll commissioned by Compassion in Dying, almost half (48%) of those contacted wrongly believed that family members have the right to make healthcare decisions on behalf of a loved one if they don’t have the capacity to make them themselves, and 22% did not know whether their family would have a right to or not. Worryingly the poll found just 4% of the public have made their treatment wishes clear in an Advance Decision, and only 4% have appointed a third party to make healthcare decisions on their behalf if they lose capacity.
From my own personal experience and from being involved with My Life, My Decision I have found conversations about end of life may take hours, days, weeks or even months to complete as will completing an Advance Decision or Lasting Power of Attorney. It is very unusual to cover everything all in one go, and views may change as the conversation progresses.
It took me a while but I’ve done my Advance Decision, and plan to also complete my Health & Welfare LPA this year. I have had some conversations with my husband, but none yet with other family members or friends. Something I know I need and want to rectify.
This week Danielle shared with me a set of cards she had been given recently. This set of cards called ‘Go Wish’ which aim to provide an easy and hopefully entertaining way to consider and discuss what it is important with you. You read through the cards and then sort them into what is very important, somewhat important and not important. The ones in the picture are ones which I think will be important to me.
I am planning to use them with a member of my family who has recently been diagnosed with dementia, but for now I thought I would try them myself. And wow . . . . they really do get you thinking about what might be important when you are seriously ill. I did it a couple of times, and different things came out and really made me realise how important it is to think about the future now and how important it is for me to talk to other family and friends. Of course things may change, but if I start now then it can only be easier for me and my loved ones in the future, and who knows what is around the corner.
If you have not yet had the conversation and are looking for ideas how to start then do look out for the Go Wish cards, you might also find one or more of the following resources helpful
- A place to drink tea, eat cake and talk about death
- The Conversation Project
- Be Ready For It
- Breaking News
- Talking to Children
- Free & Confidential Helpline for anyone with questions about end of life choices
We know it is not easy to talk about dying, and it is one of the reasons we are launching this summer/autumn in partnership with 7 Age UKs across England an outreach service to provide advocacy support for those wishing to discuss and record their end of life wishes and preferences, and training for carers, volunteers and health/social care professionals wishing to enhance their skills and knowledge in talking about and planning end of life care.
If you are one of the few who have had the conversation, and you would be willing to share how it went or what could have been done differently, then do let us know by adding a comment or sending us the form below. The more we can share how it was for us and others, then the more hopefully we can help others with their conversations.