End-of-life communication

Also called Palliative care and AAC, Advance care planning and communication, Dying without speech

Saying what matters at the end, and planning ahead for the day speech goes, so that the last words are still yours.

What it is

End-of-life communication is being able to say what you want, who you want with you, what you are afraid of and what you are not, during the last months, weeks and days. For many people speech goes before life does: with motor neurone disease, late dementia, some cancers, and simply the weakness of dying. The plan for that has to be made while speech is still there.

For people who never spoke, it is about making sure they are in the conversation about their own death at all.

Who it can help

People with a progressive condition that will affect speech, from diagnosis onwards; the earlier the better. People already receiving palliative care whose speech is fading. Lifelong AAC users at the end of life, and children with life-limiting conditions. Families, who will be the main communication partners when professionals are not there.

It is honest to say it is hard to start. Nobody wants to talk about dying while they still can. But a person who leaves it too late loses the say, and that loss is permanent.

How it works

Two things happen in parallel. Advance care planning records what the person wants: an advance statement of wishes, an advance decision to refuse treatment (which is legally binding), a lasting power of attorney for health and welfare, and a ReSPECT form or similar for emergencies. These are written while the person can express themselves and they speak for the person when they cannot.

And the person's communication is planned for the decline. Voice banking records the person's own voice for a device to use later; message banking records whole phrases in their own voice, "I love you" and their children's names among them. A low-tech backup is set up early, an alphabet board or a yes-and-no method, because at the end even a device may be too much, and partner-assisted scanning lets a person who can only blink still choose words.

Hospices and palliative care teams include speech and language therapists, and asking for one is reasonable at any point.

Getting started

This week, if speech is going, record it. A phone will do to start: the person saying the names of the people they love, a few phrases they use, and anything they want said at the end. Ask the speech and language therapist about proper voice banking at the same time.

Agree a yes-and-no method now, and write it down where everyone can see it, so that it does not have to be worked out at 3am.

Ask the GP or the palliative care team about advance care planning, and ask for the conversation to be held in a way the person can take part in: written questions in advance, extra time, the device charged and present. See consent and communication.

Where to get help

The palliative care team, via the GP or hospital, is the NHS route; ask specifically for speech and language therapy input. MND Association has detailed guidance on voice banking and communication as speech changes. Together for Short Lives supports children and families. Alzheimer's Society covers end of life with dementia. Age UK explains advance decisions and lasting powers of attorney. Marie Curie and local hospices provide care at home and in hospice.