Whether to stay in the room during a loved one's final hours

Families ask this quietly, usually because they are afraid of the answer either way. Some cannot bear to leave. Others cannot bear to stay, and are ashamed of it.

Neither response needs defending. What the guidance can offer is a clearer picture of what your presence does and does not do, so the decision is made on facts rather than on guilt.

NCI's guidance for families contains one fact that changes how most people behave in the room: most people are still able to hear after they are no longer able to speak.

It follows this with a practical suggestion — it may give some comfort if family members continue to touch and talk to the person, even if they do not respond. NCI's clinical summary puts the same instruction to clinicians, saying loved ones can be encouraged to speak to the patient as if they can hear them.

So the unanswered conversation is not a monologue into nothing. That is worth knowing before you decide what to do with the hours.

A person who cannot answer may still be listening.

There is no script, and reaching for profundity usually makes people freeze. Ordinary content is fine, and probably better: who has arrived, what the weather is doing, a story you have both told a hundred times.

Saying your own name when you come in helps someone who cannot see or focus. So does telling them what you are about to do before you do it — moving a pillow, holding a hand, wiping their mouth.

If there are things you need to say, say them. You do not need a response for them to have been said.

Some people find sitting still unbearable and do better with a task. NCI's guidance describes several comfort measures families can take part in:

• Keeping the person warm with blankets. NCI says not to use electric blankets or heating pads.
• Offering ice chips, or moistening the mouth and lips.
• Helping with repositioning, including raising the head of the bed when breathing rattles.
• Aiming a cool fan toward the face when breathing is difficult.

Doing one of these is a legitimate way of being present.

Vigils are long, and they rarely end on schedule. Splitting the hours between people means nobody has to be running on empty at the point where it matters most.

Stepping out for air, for a meal, or to sleep is not desertion. NCI's guidance does not describe unbroken presence as a duty. If death comes while you are out of the room, it is not a verdict on your vigil.

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 the result of medicines being given nor a sign that the person is doing better.

Take the moment. Say what it lets you say. Try not to reorganize your expectations around it.

NCI's guidance notes that there may be customs or rituals important to the person and the family at this time, and that it is important to let the health care team know about them. Staff cannot honor a practice they have not been told about, and they would nearly always rather be told early.

NCI notes that the caregiver's distress is sometimes greater than the patient's, and says early and constant support of the caregiver is very important. NCI also says chaplains or social workers may be called in to support the family. Ask your care team who can sit with you, too.