Every year in May Dying Matters hosts an awareness week, giving us an unparalleled opportunity to place the importance of talking about dying, death, and bereavement firmly on the national agenda.
This year we're being asked: What can you do?
What can you do to be more active in planning for dying and death, and supporting those who may need help in times of grief and bereavement, be they friends, family or others in the wider community?
Katherine Wynne, Director of Services, answers those questions, and more.
Good afternoon Katherine! Let's jump straight in shall we? Why is it important for us to have open conversations about dying and death?
It’s important because death is inevitable for everybody, and if we don’t talk about it – if it remains the elephant in the room – then what you’ll find is that we’re not prepared for it, and it becomes this big taboo. All of this leads to people struggling to have the death that they choose and deserve, and the best death that can be available to them. This also helps reduce fear and anxiety for all helping everyone prepare and making death less traumatising.
Okay, that all makes perfect sense. So would you say that, essentially, everything comes back to choice?
Absolutely. Choice and the fact that, particularly in our country, we’re not really good at talking about death, almost as though talking about death will make death come quicker, or that people will only respond by being upset.
That’s what makes it so refreshing to work in this field and in a pilot with NHS England, because suddenly everything you read, everything you think about, and everything I talk about is about death. Personally, it’s become less of an enigma, and that effect can only be beneficial for other people.
You mentioned a pilot project which Independent Lives is working on with NHS England. Can you tell me a little bit more about that? What’s the context behind the pilot – where did it all begin?
We have great end of life services – nationally, locally – but statistics show that of 82% of people who wanted to die at home only 19.7% where able to.
NHS England, with this pilot, are exploring how people can have a better death through person-centred conversations and freeing up resources which can then be spent in a different way. This ultimately empowers people to identify the barriers which might get in the way of them dying in their preferred place.
The aim is to move death away from being a medical experience, and to push it toward being a human experience.
That sounds like a far cry from the traditional view people would generally have of end of life care?
It is, but it’s important to note that this isn’t meant to replace the traditional approach. The work that goes on around end of life is excellent, and working with the NHS on this pilot complements that work; it’s attempting to fill in the gaps, piece everything together, and deliver a more holistic approach to end of life care.
So this is the future for end of life care?
I think the future is definitely a move away from hospitals being thought of as the ‘default’ places to die. Hospitals obviously play a crucial part in death and dying, but for a lot of people there is an overwhelming desire not to die in hospital. It’s all about how we, as family, friends, and colleagues, can support that to happen.
As we’ve been talking I’ve noticed that you’re being quite candid – speaking about dying rather than passing away for example – has the change in language helped you to talk more openly about end of life?
It can be really hard to talk about death and dying. On a personal level, my very good friend’s partner died over Christmas – working on this project and embracing an open approach when talking about death made the entire process more comfortable for everybody involved. By being open and honest we didn’t have to worry about saying the wrong thing – and that goes a long way towards putting people at ease when having these kinds of conversations.
Do you have any advice to enable people to better prepare for end of life?
There are some fantastic websites out there, Dying Matters and Living Well, Dying Well come to mind. They do incredible work and their websites are full of brilliant useful information.
There are lots of things to think about when planning a good death, but what you think you have to do to have a good death quite often isn’t the case. The concept of a good death is going to be remarkably different from person-to-person: your body doesn’t have to go to a morgue, you don’t have to have a big funeral or ceremony, and you don’t need to be buried in a graveyard. These are things which a lot of people won’t consider when they’re thinking about death.
You can do things your own way – it’s your death.
That’s a really useful message. Taking a tangent now, I’d like to ask you about your thoughts on digital legacy – how do you feel about the ‘you’ which you’ll leave behind online?
That’s a really interesting question. I’m getting to the age now where I know people who have died and are on Facebook. Friends still comment on their pages – I can see how to some people it could be nice to have that ongoing reminder of that person, their life, and the experiences they shared together.
It’s a relatively new concept to think about and something I suspect that very few people think about when planning their death. I really see this as something which friends and family should bring up with somebody during end of life, so that their digital presence can be handled in a way which they agree with.
Just to wrap things up, and in the spirit of talking openly about dying and death, what does a good death mean to you?
A good death to me means having control. Personally, and I stress that this is my personal opinion, I would like control over where, and possibly when, I die.
That’s how I feel now, but that could change. Ultimately, as long as people respect my wishes, and support me in my own view of a good death – that’s what really matters.