Dying Matters Awareness Week

Ahead of the Dying Matters Awareness Week, May (May 13-19), Healthwatch Cornwall is asking people to have #LittleLifeConversations, encouraging the community to engage in discussions and make death conversations a part of everyday life.

In Healthwatch Cornwall’s End of Life research in March 2018 they found 41 per cent of people in Cornwall hadn’t talked to their family and friends about their preferences for care, whilst just four per cent had an end-of-life care plan.

Amanda Stratford, chief executive of Healthwatch Cornwall, said: “Talking with friends and family about death is something we all find difficult, but it is so important whether or not you are expecting death soon. Having an understanding with your loved ones about how you want your final days to be managed will help avoid confusion and heartache when the time comes.

“We’ve found the best way is to have little conversations while doing something ordinary like the dishes, going out for a walk, or over a cup of tea. They needn’t cover all the big decisions at once. It can be as simple as communicating what is important to you.

“Obviously, there are the big issues as well. Is it about quality of life and comfort, or length of life at all costs? What would we want our care to look like if we couldn’t make decisions for ourselves? Ultimately, our aim is to get people of all ages to tentatively start these conversations and there are a number of resources available to help document them.”

The campaign has some high profile supporters and contributors. Kris Hallenga founded the breast cancer awareness charity CoppaFeel! after she was diagnosed herself at just 23. Despite her terminal prognosis she tirelessly raises awareness of the disease amongst young women.

Kris, who now lives in Cornwall, described what it’s like for her to talk about end of life wishes with loved ones: “Usually we have quite an amusing chat. It always leads to some kind of humour, I think that’s the best way British people, in particular, deal with these things.”

Dr Kathryn Mannix, a consultant and founder member of the Association for Palliative Medicine, said: “By thinking ahead with our loved ones, we can frame a statement of our wishes to guide them when we no longer can. In fact, the conversation with them is probably more important than the statement of preferences itself”.

Amanda added: “Death really is part of life. Whether you are ill or not, it’s something we are all going to experience one day and we need to be able to talk about it with our family and friends. It can be reassuring to know that our families know our wishes and can be guided by them at the most difficult of times.”

Healthwatch Cornwall is an independent organisation that works with communities to ensure better health and social care services in Cornwall.

Follow the #LittleLifeConversations campaign @HWcornwall

For more information on how to start your conversations, visit www.healthwatchcornwall.co.uk/little-life-conversations/

CASE STUDY

Jan Barker lives in St Erme in Cornwall. She is 72 and is a semi-retired registered healer. Jan talks about how the death of her mother in 2015 made a big impact on her own end of life wishes.

Jan Barker

“Over the last year of her life, my Mum was in and out of hospital and eventually moved into a nursing home. It was at this time that my sister and I started to sort out her house and found a letter, addressed to us both, which said: ‘To be opened when I am no longer with you’. We both assumed this contained instructions for her funeral.

“When she died a few months later, we opened the letter and soon realised we were wrong. It was a beautiful, personal letter – but it had no information about her end of life wishes.

“This threw us into a bit of a spin and meant we had to wing it when we planned her funeral. All the decisions were left up to us – the music, the ceremony, the words. Luckily, we had a fair idea of her likes and dislikes, so we were able to guess at what she might have wanted.

“This obviously put some extra stress on my sister and I – we didn’t mind, but it opened my eyes. I knew I didn’t want my children to go through the same process when I die. As a result, I have been quite prescriptive with my wishes.

“I don’t want a conventional funeral. I would like a natural burial, no words and no tears. I have set aside some money for a big party instead. I want people to remember me as they wish. Hopefully this won’t happen for a long time! But I wanted to make sure my children had this information in advance.

“We didn’t sit down and have a planned, formal discussion. Instead, it came up naturally in conversation, perhaps when we were talking about other funerals. I added some humour in there and got my messages across without them getting upset. Now they are clear about what I want, and we all found it really reassuring. I made it all very natural and I think they will respect my wishes. I’ve reiterated what I want in my will, as a reminder!

“In our culture death has only really become a problem in recent years, as people don’t talk about it and it is often removed from the family home. After all, whether we feel comfortable with the idea or not, we are all we are all going to die at some point.

“I’d like to encourage other people to talk about death and their wishes with their loved ones. I want to normalise these conversations. I think people should have the topic in the back of their minds and bring the subject up when an opportunity arises – don’t force the conversations, don’t make it formal.

“I’m so glad I had the conversation with my children. It has been so reassuring for us all. It means they will have one less thing to do when I die, they won’t have to worry about whether they get it ‘right’ or not.”

For more information on how to start your conversations, visit www.healthwatchcornwall.co.uk/little-life-conversations/