Saying goodbye when someone is no longer fully awake

Almost everyone assumes there will be a scene: the person propped up, alert, and a conversation with an ending. In practice, the decline in alertness often arrives sooner and faster than anticipated, and families find themselves at the bedside with everything still unsaid.

That is why NCI's clinical summary treats the recognition that death is approaching as a practical trigger. It describes it as an opportunity to encourage family members to notify individuals close to the patient who may want an opportunity to say goodbye.

If you are wondering whether it is too early to call someone, it probably is not.

The fact that changes what happens in the room is this, from NCI's guidance for families: most people are still able to hear after they are no longer able to speak.

Its clinical summary makes the same point to clinicians. It notes patients may be aware of the presence of others. It adds that loved ones can be encouraged to speak to the patient as if they can hear them.

You will get no confirmation. No nod, no squeeze of the hand, no reply. That absence is not evidence that nothing arrived.

Speak as though you are being heard. NCI says most people can still hear.

Families often freeze because they think a goodbye has to be eloquent. It does not. Simple, specific words are enough. Ideas to start from, not from NCI:

• Thank you, for something particular rather than in general.
• I am sorry, for something particular rather than in general.
• I love you.
• Here is what I will carry from you.
• It is all right. We will look after each other.

One idea from us: say your name when you arrive, and say what you are doing, such as moving a pillow or holding a hand.

If the words will not come out loud, write them and read them. Reading can be easier than finding words on the spot.

NCI's guidance says it may give some comfort if family members continue to touch and talk to the person, even if they do not respond. For people who have never been at a bedside before, that permission matters — many hold back for fear of causing harm.

Hand, forearm, shoulder, hair. Slow rather than sudden. If the care team has asked you to avoid a particular area, follow that; otherwise, ordinary human contact is the point.

NCI's clinical summary describes limited, transitory moments of lucidity near the end of life. It says these are not a sign the person is improving.

If one arrives, use it. Say the important thing first rather than working up to it. And afterwards, resist rebuilding your expectations around it — these moments are not a sign of improvement.

Not everyone can be in the room. A message read aloud by someone who is there is a real goodbye. NCI says most people can still hear after they can no longer speak, so a message read aloud may be heard. A phone held to an ear may work for the same reason.

This can be an option for people who are far away or who cannot face the room.

NCI's last-days guidance describes anticipatory grief, which starts before the death, as a normal response to a loss that is coming. Many families feel this while sitting beside someone who is present and absent at the same time.

Grieving before the death does not mean giving up on the person. It means the loss has already started.

NCI's guidance on the final days notes that grief is a normal reaction to loss and that people who feel unable to cope may be helped by grief counselling or grief therapy with trained professionals. That door is open before the death as well as after it.