EASEing into Death

This has been a week of death cafes, and it’s not even Halloween or our annual time of Remembrance. We met on the Tuesday to listen to a presentation from Palliative Care Scotland, linked to the Good Life, Good Death, Good Grief organisation, about EASE. It’s much simpler just to say EASE, rather than End of Life Aid Skills for Everyone. It initially sounds a bit like first aid for the dying, which could turn a few stomachs; however, far from it. This is about reality, preparing us all for the eventual death of a loved one, or ourselves preparing our own family for our death – but entwined in practical ways of helping everyone. How does this session do that?

EASE Course

The whole session was about looking to build comfort and confidence in supporting families with dying and end of life. We discussed what concerns we might have, and the responses were far ranging. From my own concern that ‘was I going to miss anything?’, the pain we might experience, how to deal with these administrative practical details when we just didn’t have the IT know-how or even the passwords, to the shock of dealing with arrangements for a death which no one was expecting. It was stressed that we should always be looking out for ourselves throughout this process. We were invited to consider annotating a cookie jar with ‘what things make our heart sing’, so we could return to that when we needed a lift. We had that permission to do this. We also noted the traditional reticence of speaking about death and end of life concerns.

EASE Menu

Shown right, was the EASE Conversation menu. In Death Cafe we aren’t recommended such a menu of questions, as the founders of the Death Cafe wanted that the questions might come from the person themselves. What we experienced was that these questions offered the opportunity of sharing these with family, to break open that reticence. We each have our own experience of someone dying, perhaps from a distant past but it is still very real. From within those emotions, something still stirs: often we might not wish those feelings to escape, but when we do, we might possibly see our fears and or even our hopes.

EASE is real

We discussed how we might create a folder or book which explains our desires at the end of life. That might refer to how we might wish to be medically treated or what arrangements might we want for our own funeral. That could be the hymns or songs that would be played, whether we wish to be buried, cremated or any other way that is available at the time, and what happens to any remains. This is powerful stuff, evoking many emotions. But we wondered what might be the positive impact on our loved ones who have so many answers there, in black and white in front of them at such a distressing time.

As one person said, I’m paraphrasing their introduction to their book,
“I know you are upset, I’m not going anywhere;
go and have a coffee and come back to read what I have said”.

Financial Issues

Where do we record all of the financial information? What bank accounts might we have access to, and importantly how do we get that access? Are our valuable possessions stored anywhere around the house? You can quickly see that this could lead to potential interesting conversations with the police and insurance company if our property were to be robbed, but how might we allow access to our loved ones to this information?

Legal Issues

We were (re-)introduced to Wills and Power of Attorney, and the differences between English and Scottish law. Who can make our decisions for us if we lose mental capacity?

Medical Issues

For some the end of life could be considered harrowing if unnecessarily prolonged. We might consider Future Care Planning, or to request that the medics do not feel obliged to attempt CPR or re-starting the heart.

Online issues

Surely we can be spared the SPAM at the end of life?

But what of those stored photos, contact details and even a list of passwords which are on our personal accounts, which may be denied to our loved ones upon our death – how might others access them?

That digital legacy is available if we plan for it.

Conclusions

I’ll leave you with a poem, which was provided as part of our feedback:

I arrived in fear,
Of what I’d hear and see.
Only to find that I was at ease.
Some of the answers lay inside of me.

I can write down my wishes,
Choose to plan ahead.
Then seek advice,
To talk about what we dread.

Death is best discussed,
With friends and family.
So thank you for your time,
Allowing us to reflect, gently.