Families ask us what to expect and then sometimes wish they had not, because the honest answer includes details that are hard to hear in advance. But in fifteen years of doing this work, I have never met a family who regretted knowing. What frightens people at two in the morning is not the change itself. It is not knowing whether the change means something is wrong.
Almost none of it means something is wrong. Most of it is the body doing what bodies do.
Weeks out
Sleep expands until it takes most of the day. Interest in food and then in liquid falls away. Conversation shortens. The circle of people the patient wants around them narrows, often to one or two, and this is not rejection — the world is simply becoming smaller.
Some patients begin to speak about travel: packing, catching a train, needing to get home. Others speak with people who died years ago. This is common, it is not usually distressing to them, and it does not need to be corrected. Sitting with it is kinder than arguing with it.
Days out
Eating and drinking largely stop. This is the change families find hardest, and it is worth repeating what is true: a dying body cannot use food, and hunger and thirst are not what the person is experiencing. Dehydration at the end of life is associated with less swelling, less breathlessness, and fewer secretions. Mouth care with swabs and lip balm relieves the dry mouth, which is the real source of discomfort.
Hands and feet cool and may turn mottled — a purplish, lace-like pattern across the knees and feet as circulation draws inward to the core. Urine darkens and decreases. There may be a period of restlessness, plucking at the sheets, or agitation, which we treat.
Breathing changes shape. It may become shallow and fast, then pause for ten, twenty, even forty seconds before resuming. Those pauses are frightening the first time and are a normal part of the process.
Hours out
Consciousness recedes, though hearing appears to persist longer than anything else. Keep talking to the person. Say what you want to say, and say it more than once.
Secretions may pool in the back of the throat and produce a rattling sound with each breath. It sounds like drowning and it is almost certainly not distressing to the patient, who is too deeply unconscious to feel it. We reposition, reduce fluids, and give medication to dry the secretions — as much for the family, honestly, as for the patient.
Breathing becomes irregular, sometimes with a long pause and a final few shallow breaths. There is often no dramatic moment. Frequently families realize a minute or two afterward that the last breath has already happened.
What you should do
Nothing urgent. There is no need to call 911, and no need to call the coroner. When you are ready — and it may be twenty minutes or three hours later — call us at (818) 273-4884.
A nurse will come to the house, confirm the death, notify the physician, call the funeral home you have chosen, and dispose of the remaining medications. You may sit with the person for as long as you want to. You may open a window, light a candle, read something, call people, or say nothing at all. There is no correct version of this hour.
A few things worth knowing beforehand
Decide which funeral home or mortuary you will use before you need to. It takes twenty minutes on an ordinary afternoon and is very difficult to do at four in the morning.
Ask us for the comfort kit instructions again, even if you were shown them at admission. Nobody remembers a demonstration from three weeks ago.
And take the shifts. Families who try to keep an unbroken vigil are exhausted for the part that matters. Sleep when someone else is sitting. Many patients, for reasons nobody fully understands, die in the few minutes their family has stepped out of the room. If that happens, it was not a failure of vigilance.