Talking to someone who is dying

The most common thing dying people told me was that people had stopped coming.

Friends, colleagues, sometimes family. Not through indifference — through not knowing what to say, and being frightened of saying the wrong thing, and finding it easier to send a message than to sit in the room.

The result is that people spend the end of their lives in a smaller world than they need to.

What people are frightened of

Saying something upsetting. Crying. Being asked something they cannot answer. Not knowing when to leave. Seeing someone changed. Their own mortality being in the room.

All reasonable, and all smaller than they appear from outside.

What is actually wanted

Almost always: normality, presence, and being treated as a person rather than as a patient.

People who are dying are frequently bored, frequently lonely, and frequently exhausted by conversations that are entirely about their illness.

The best visits are usually ordinary. Gossip. What is happening at work. The football. An argument about something trivial. The things you would have talked about anyway.

Practical guidance

Go. This is the whole of it. An awkward visit is enormously better than no visit.

Keep it short. Twenty minutes is frequently plenty. People are tired, and short visits more often are better than one long one.

Say when you are leaving, and say when you will come back, and then come back. The unfulfilled promise to return is remembered.

Follow their lead. If they want to talk about dying, talk about it. If they want to talk about the garden, talk about the garden. Do not steer.

Sit down. Standing signals that you are about to leave. Sit at their level, near enough to touch if that is appropriate.

Touch, if it is welcome. Holding a hand does more than most conversation. Ill people are frequently touched only clinically, which is a specific and under-recognised deprivation.

Silence is fine. Sitting quietly together is a legitimate visit. You do not have to fill it.

Bring something ordinary. A newspaper, a photograph, a story, something to look at together.

What to say

There are no right words and there are some that help.

"I don't know what to say." Honest and better than performance.

"I'm sorry this is happening."

"What's it been like?" Open, and it allows them to say as much or as little as they want.

"Is there anything you want to talk about?"

And the four things that hospice literature identifies as mattering most, in some form: thank you, I forgive you, please forgive me, I love you.

These are difficult to say and people almost never regret having said them. They very frequently regret not having.

What not to say

Relentless optimism. "You'll beat this." It closes the conversation and it isolates the person, who now cannot say what they know.

Advice about treatment they have not asked for, particularly about alternatives.

Comparisons. "My aunt had that and she was fine."

Making it about you. Crying is fine; requiring them to comfort you is not.

"At least." Any sentence beginning this way.

Correcting them. If they say they are dying, do not argue. Agreement — "I know" — is a relief. Disagreement leaves them alone with it.

If they want to talk about dying

Let them. This is the conversation people most want and most rarely get, because everyone around them deflects it.

You do not need answers. Listening is the task.

Useful responses: "What worries you most?" "What would help?" "Tell me."

People frequently want to talk about practical things — the funeral, what happens to the family, unfinished business. Being able to discuss it is a relief rather than a distress, and being unable to is genuinely burdensome.

When they are less responsive

In the final period, people may be unconscious or minimally responsive.

Guidance from palliative care is generally to assume they may hear. Talk to them. Say who you are. Say what you came to say.

Whether and how much is perceived is uncertain, and there is no cost to acting as though it is, and considerable cost to leaving something unsaid.

Familiar voices, music they liked, and quiet presence all appear to be soothing.

If you cannot go

Distance, illness, and estrangement all happen.

Write. A letter that says what you would have said. Someone can read it to them. This is done more often than people realise and it is valued.

Phone or video call, briefly.

Send something specific — a photograph, a recording.

The thing worth knowing afterwards

Almost nobody, in my experience, regretted having visited. A great many people regretted not having, and that regret is durable and it is not fixable.

If you are hesitating about whether to go: go.

Hospice and palliative care teams can advise on visiting and on communication. Ask them — it is a routine question and they will help.