Over the past 10 days I have not stopped thinking about end-of-life rights and choices. This has mostly been because I’ve been preparing our expression of interest for flagship funding through the Big Lottery Silver Dreams Fund – Flagship Grants. I’ve also though been thinking about end-of-life because of a friend.
We think he might have a form of dementia and are currently awaiting assessments to be completed. He has throughout his life been strong willed, independent and very opinionated! So it is quite scary now as we await the outcome of the assessments. He is still active, but not as much as the was and we have all noticed he is beginning to struggle with some aspects of his life. And as I sit here thinking about him and the project. . . . my wish is that I know and understand his wishes, his preferences and his views now, rather than guessing them when he loses capacity.
Talking about death and dying, especially when you or someone you care about have just been diagnosed or are awaiting a diagnosis, is not easy. But discussing someone’s wishes and preferences when they are dying or have lost capacity can be even more difficult.
Every older person should have the opportunity to talk about their end-of-life wishes, and it is important that we encourage older people to talk about dying earlier rather than later. The British Attitudes Survey 2013 found that 28% of over-75s and 17% of 50-75year olds cannot discuss end-of-life issues because others do not want to talk about them. Family members, doctors & nurses often lack the vocabulary & confidence to start discussions about dying (Mitchell 2002 & Parker et al 2012). However those who can have these discussions and can make end-of-life decisions, using tools such as Advance Decisions, have more positive care experiences (BMJ 2000:320:19).
ELRA in East London is helping older people have these discussions and make end-of-life decisions by providing information, training and support. We are increasing the number of people in Tower Hamlets, Hackney and Newham who have the knowledge and confidence to discuss death and dying, so older people in east London have someone to talk to in their local community. And the flagship funding would enable us to replicate this excellent work Verena and Vicky are doing, nationwide.
And my friend . . . . . well I am supporting him to have these discussions too. I am helping him complete his Advance Decision, and have suggested he also considers a Health & Welfare Lasting Power of Attorney. It is his life, and so I want him to make the choices about what happens to him. Not anyone else. It is important to him and all that know him, that he is able to make those key life decisions even when he loses capacity. Which is why we are talking now.
Talking is good, and we want to do it nationally!