What to Say and Do During a Final Visit

Ask the nurse or the family what to expect. Someone in the last days may be asleep most of the day, may not open their eyes, may be breathing irregularly, and may look markedly different from the last time you saw them. Knowing that in the corridor is better than discovering it at the bedside. Ask what time of day they are most alert, and plan a short visit rather than a long one. Twenty minutes is usually more use than two hours, and can be repeated.

Hearing generally persists after speech and movement stop. Say your name when you arrive, because recognition takes longer now. Say what you are doing before you do it: I am going to hold your hand, I am going to move the pillow. Speak at normal volume in a normal voice. Talk to the person rather than about them in the third person while standing over them, which is the single most common thing families regret afterwards.

The physician Ira Byock reduced this to four sentences that cover most of what people later wish they had said: I forgive you, please forgive me, thank you, and I love you. They do not all apply to every relationship, and none of them require a reply. Beyond that, specific memories work better than summaries. Naming what the person gave you, taught you, or was for you, in plain words, is more useful than praise. If you want to give reassurance about who will look after whom, say it concretely.

Silence is not failure. Sitting, holding a hand, reading aloud, playing music the person chose, or simply being in the room are legitimate and complete. You do not have to produce a conversation. Saying that you do not know what to say usually lands better than a rehearsed speech. Crying in front of the person is not a harm.

Confusion in the last days is common. If someone is talking to people who died years ago, or asking to go home while at home, correct them gently once. If that does not settle it, stop correcting. Arguing with delirium escalates it. Answer the emotion rather than the content, keep the room calm and adequately lit, and tell the nurse about new or worsening agitation, because some causes are treatable.

Children can visit and usually do better with a visit than with exclusion, provided they are told beforehand exactly what they will see and hear, in concrete terms: the sound of the breathing, the tubes, the fact that their grandfather may not wake up. Use the words died and dying rather than passed away or lost, which small children take literally. Give them a specific thing to do if they want one, and an adult whose only job is to take them out of the room whenever they want to leave.

A phone held to the ear works, and hospice staff and nurses do this routinely. So does a letter read aloud by someone in the room, or a recorded message. Ask; it is a normal request.

Say goodbye each time as though it might be the last, because it might be. Then go without ceremony. Many families keep a vigil in shifts, which is worth organizing deliberately so that people sleep and eat. It is common for a person to die in the few minutes when the room is finally empty, and it happens to attentive, devoted families who stepped out for coffee after four days. It is not a message and it is not a failure.

There is no requirement to leave immediately. If death occurs at home under hospice, call the hospice number rather than 911. Sitting with the body for a while is permitted, and many people find they want to.

• NCI PDQ, Communication in Cancer Care (patient version)
• NCI PDQ, Last Days of Life (health professional version)
• NCI, Coping With Advanced Cancer patient booklet