This week as part of our plan to share #WhatPeopleTellUs each week, we have a story about why it’s so important that we get death and dying right.

We were contacted by a man, whose wife had cancer.

They were both led to believe the chemo was working...

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...so he was shocked when he was called the day before she was to come home from hospital (for an unrelated issue) and told she was coming home to die.

There was a #DNR form in her notes from the day she was admitted, with no explanation.

Whilst the prognosis for her cancer was uncertain, at no time were they told to go home and get their affairs in order. They were never told she was dying.

Because they hadn’t been told, they were left with no practical help, no palliative care nurse or respite care.

Simply told to take her to A+E if she had problems (this was during COVID lockdown). Even when he asked what to expect, he wasn’t given any practical information so when he found her ‘gasping for breath’ he found it horrifying and didn’t know what to do.

So what’s gone wrong here?

It’s easy to focus on the #DNR, and he wonders if he'd challenged the DNR would she still be here?

We know the problems of DNR forms, and when communication isn’t as good as it should be - it’s been well documented recently. https://www.independent.co.uk/news/health/coronavirus-nhs-death-do-not-resuscitate-hospitals-a9456336.html

But here, we need to go back a step...why was it a surprise that she was terminal?

Why wasn’t this communicated earlier and at a point before hospital admission?

Were the treating doctors at hospital wondering the same thing? (we know this happens).

Whose job is it?

If they were told about their prognosis honestly, a lot earlier and if an open discussion about options and choices had taken place all this could’ve been avoided.

Asking questions like:

If this happened…what would you like?

You’re ok now, but we need to think about the possibility of…”

They could have been better prepared. If conversations are done well, and early, when a discussion about CPR takes place, it might not seem so ‘out of the blue’ (a phrase often used by people/relatives).

If done well, a grieving spouse isn’t left wondering ‘what if...' questioning their decisions and whether they’d done the right thing, or asked the right questions.

We need to not make death, dying and grief harder, because it’s already hard enough.

We are sharing #WhatPeopleTellUs because we need to reflect back these stories to those who need to hear them.

We want to bridge the gap between professionals + patients.

How often do medics hear about what happens after? The implications, or consequences of decisions made?

We want to highlight things (both good and bad) so that we can start to see how the system works together - what decisions mean for patients and professionals - so we can think about how we might all improve to make death and dying as good as it can be.

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