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, noting patients may be aware of the presence of others and 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, because you probably are.

Families often freeze because they think a goodbye has to be eloquent. It does not. The things people report being glad they said are ordinary and specific:

• 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.

Say your name when you arrive, and describe what you are doing as you do it — moving a pillow, holding a hand. Orientation is a kindness when someone cannot see or focus.

If the words will not come out loud, write them and read them. Reading is easier than composing, and the person hears the same thing either way.

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 notes that in the final days to hours, people often have limited, transitory moments of lucidity, and that these are not necessarily a result of medicines nor a sign the person is doing better.

If one arrives, use it. Say the important thing first rather than working up to it. And afterwards, resist rebuilding your expectations around it — the summary is explicit that it does not mean the direction has changed.

Not everyone can be in the room. A message read aloud by someone who is there is a real goodbye, and given what NCI says about hearing, it is heard the same way as a message delivered in person. A phone held to an ear works for the same reason.

Do not underestimate this option for people who are far away, or who cannot face the room. It is not second best.

NCI's guidance on feelings during advanced cancer includes grief for things other than death itself — lost abilities, plans that will not happen, separation from people you love. Families feel a version of this too, 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, which is simply true.

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.