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Dying Matters: why we must learn to talk about the end

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Palliative care is essential at the end of life Palliative care is essential at the end of life

In late April, I was invited to meet with a cancer wellbeing group in the East of England. It comprised about 15 adults, all with incurable cancer, plus the nursing staff who support them. They were there to help each other, and there was a lot of care and conversation in the room.

However, one of the patients said that her son and his wife couldn’t and wouldn’t talk to her about her terminal condition, and her end of life and funeral wishes. For them, it was too uncomfortable, or possibly upsetting. Whatever the reason, she feels it is isolating, and is obliged to spend her final months of life tiptoeing around the fact that she’s dying whenever she’s talking to them.

The Dying Matters campaign started in 2010, to help make people more comfortable talking about dying, death and grief. Every May we hold an awareness week and this year’s theme is Are We Ready. Are we ready to talk about death? Are we ready to help a friend plan their funeral?

There are many good reasons to eat well and stay fit, but death is still waiting for everyone eventually. So what would it look like if we were all more comfortable talking about it?

For a start, there would be far fewer arguments about the end of life care someone did or didn’t want, fewer fights over funeral arrangements or wills. We’d be able to say, ‘it’s what she would have wanted’ and know we’re exactly right because she had discussed it and written her choices down.

There would still be a need for DNR/DNACPR/ReSPECT forms and Lasting Powers of Attorney as a way of capturing end of life care wishes, but between them they’d be almost universal, greatly reducing instances of treatment being given that wasn’t really wanted. There’d still be a need for palliative and end of life care, but this would be mostly delivered in the home. Most people want to be at home when they die.

It would make life easier for non-palliative medical staff. I’ve heard horror stories of medics being unable to talk about death: one man discovered he was terminally ill when he went to get the results of a scan and the consultant looked at his file and said: ‘Oh, I need to refer you to the palliative care team.’

The death of a patient is a serious and sombre moment, but in the absence of negligence, it doesn’t represent a failure by the nurses and doctors involved – 90% of deaths are not a surprise, given the patient’s recent history. There are some things we just can’t cure. This isn’t down to a lack of caring: it’s life.

If we could all be more comfortable talking about death – patients, families, nurses, doctors, all of us – it will be easier to tell people, early and honestly, that their lives are coming to an end.

There are many things to celebrate about healthcare in the 21st century. We’re living longer, and more actively, than ever before. Both the length and quality of life would stun medics from a century ago. But we will die, every one of us.
Will we be ready?

Toby Scott, Head of Communications and Campaigns, Hospice UK

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