“Where would you like to die?”

This question is standard on most easy-read end of life care plans. It’s a very good question, but how useful is it to record someone’s choice well ahead of time?

It is not good enough to simply state “Irene wants to die at home”. It’s important to know why Irene wants to die at home, what aspects of “home” matter most to her, and how her needs and wishes might be met if home is not an option.

Perhaps she should be asked: “How do you want to live? How do you want to spend your final weeks/days/hours?”

Should all people with learning disabilities have an end of life care plan?

That’s the question I asked in my previous blog. Remember, we’re talking end of life care plans. We’re not talking funeral plans. (They are important too, but it’s a different discussion.)

Of course all people with learning disabilities should be involved and prepared for death and bereavement, where it affects them. (In fact that goes for all of us – you, me, the postman and the prime minister.)

The last thing you want is panicked decisions because you’re all taken by surprise. Or, worse, decisions that go against what the person would have wanted, if they were able to say. But end of life care plans should be tailored to the person and their circumstances. They should be useful and used. They should be working documents.

What isn’t particularly helpful, in my view, is trying to industrialise this. I am particularly bothered by reports of “All people in that service had an identical end of life care plan in their files.”

It’s not so much the plan itself that is most important, but the people who the plan is for, and the people who work with the plan.

Let me illustrate.

Here is what happened to 11 people with learning disabilities who took part in my very first big study. It’s over a decade ago, but still relevant. All were terminally ill with cancer. I spent a lot of time with each of them and talked with those who could talk (not all could; some had severe learning disabilities and communication difficulties). They all died during the study. Four people lived in their own flat at the time of diagnosis and seven lived in staffed residential care homes, where they had typically been for around two decades.

If they had been able to say, several months before they died, where they would like to be cared for and where they would like to die, I’m sure most (if not all) would have said “Here, where I am living now.” In fact two men, John and Richard, explicitly stated this wish.

But it can be difficult for people with learning disabilities, their families and care staff to imagine the physical and emotional changes that come with advanced illness and approaching death.

In the end, only three people died in their usual place (two in their care home; one in his own flat – unfortunately, he was alone and probably frightened). For the others, the transfer to a nursing home, hospice or hospital was mostly appropriate.

One woman, who lived in a residential care home, was confused about being at home. “I have pain,” she kept saying. “I should be in hospital.” She was transferred to a hospice and loved it there. Unlike in her own bedroom, there was space for the hoist and wheelchair she needed, her pain was better controlled, and her family, care home staff and friends could visit whenever they liked. “It’s handy,” she said. She was clear that she wanted to stay.

Both John and Richard changed their minds when they became more ill.

John recognised that the care he needed was so complex that his family could not manage to support him. He loved the care and attention he received at the hospice. John died in a nursing home where his family could visit without worrying about his physical care.

Richard, who shared a flat with his friend Charlie (with support workers coming in every day), had been fiercely independent and resisted any suggestion of residential care. When I asked him what it would be like if he became too weak to stay in his flat, he said, “That would be awful.”

There were no standardised end-of-life-care-plan-documents in those days, easy-read or otherwise. But if there were, Richard would undoubtedly have ticked the MY OWN HOME box. The people who supported him held lots of worried meetings to think about how on earth to make that possible. But a year later, Richard surprised everyone by deciding to move into a nursing home. He had become concerned about the burden on Charlie. “What would Charlie do if I had a fall and couldn’t get up?” Richard said. “I can’t be in my own flat. So a nursing home is better. I wouldn’t want to go back to my own house, because I would worry what happens when I am weak. It’s much better like this. I am well cared for. I feel comfortable and safe in the nursing home.”

It is for exactly these reasons that I, myself, do not have an end of life care plan that specifies where I want to be cared for in my final months, weeks, days. I have seen again and again how people’s choices and priorities change when they approach the end of life, in ways that are not always predictable.

Good end of life care planning allows for this. It involves thinking ahead to what physical changes and needs are most likely (so you need to work with doctors and nurses experienced in that kind of thing), and trying to match that with what is available and possible (so you need to work with the person’s usual care and support staff) and what matters most to the person (so you need to work with the person themselves, and their family and others who know and love them). How you record all these discussions doesn’t really matter – as long as it is recorded somewhere, and everyone involved knows what’s what.

Let’s say it again…

End of life care planning is not so much a question of where and how do you want to DIE? but where and how do you want to LIVE until you die?

What is most important to you in your final months? Your final weeks? Your final hours?

The multi-disciplinary team around Richard did a great job. They knew what Richard wanted, but they also knew that his physical condition would change, well before Richard himself truly understood this. The key thing was to establish what mattered most to Richard. In his final years, this was “being independent”. But as he gradually lost his independence, this changed to “not being a burden to Charlie”. Crucially, Richard’s decision to move into a nursing home was, in fact, honouring his desire for independence. It was his own decision.

This blog was going to be a quick guide to good end of life care planning (when, who, how) but as usual, I have been side-tracked into story-telling. Oh well. There’s always a next time. Keep the discussions going!

PS The stories in this blog are told in this article and (if you want the full works) this book