Most families sitting up with somebody who is dying have never been told which changes are the illness and which need a phone call, or who is allowed to do what.

Who is allowed to do what

Tap anything in the grid. Rows are the things that come up in the last days and the hour afterwards; columns are the people a family might ring. A tick means this is a normal part of that person's job, a cross means asking them will not get it done, and the explanation says what happens if you ask anyway — which is the part nobody is told. Tap a column heading instead to see everything one person can and cannot do.

What the last days actually look like

• Sleeping more, then not waking. The withdrawal is gradual: more sleep, less interest in the room, shorter conversations, then long periods of unconsciousness. It is not a coma to be reversed and it is not a sign of pain.
• No interest in food, then none in drink. This is part of dying rather than a cause of it, and it is the single change families find hardest to accept. Somebody who is dying is not hungry, and feeding against that causes discomfort rather than preventing anything.
• Breathing changes shape. It may become shallow, then deep, then stop for fifteen or twenty seconds and start again — a pattern with a name and no distress attached to it. It looks alarming and it is not an emergency.
• Rattling or bubbling breath. Secretions pool in the throat when somebody is too sleepy to clear them. It sounds distressing to the room and there is good reason to think the person is not aware of it. Repositioning helps; suction usually makes it worse.
• Hands and feet cool, and the skin mottles. Circulation withdraws to the centre. Purple-blue patterning on knees, feet and the underside of the body is expected in the last hours.
• Restlessness, picking, muddled talk. Common, and worth reporting rather than enduring — because there are specific treatable causes (pain, a full bladder, constipation, some medicines) and specific medicines for the agitation itself.
• A lift, sometimes, a day or two before. A period of unexpected clarity and appetite is well described and is not recovery. Families who know this in advance use it; families who do not are devastated twice.

Food and drink at the end

• Stopping eating and drinking is a consequence of dying, not the cause. The body is shutting down its ability to process either. This is the reverse of the intuition that keeping someone fed keeps them alive, and it is the single most useful thing for a family to have understood in advance.
• A drip does not usually help and can harm. Fluids given when the body cannot handle them collect in the lungs and under the skin, which makes breathing and swelling worse. In some situations a small amount is worth trying; it is a decision to make with the nurse or doctor, not a default kindness.
• Thirst and dehydration are not the same thing. What relieves the dry mouth is mouth care — sponges, sips if they can manage them, lip balm, cleaning the mouth every hour or two. That is the part families can do, and it makes a real difference to comfort.
• Do not put anything in the mouth of somebody who cannot swallow. Small amounts of moisture on a sponge are safe; a cup or a spoon of anything is not, because it goes into the lungs.
• “Are we starving him?” deserves a straight answer. No. Somebody dying of an illness is not dying of hunger, and forcing food does not change the timeline — it changes how the last days feel. Ask the nurse to say this out loud to the whole family, because it usually needs to be heard from a professional.

The breathing, and the sound

• Pauses of fifteen to thirty seconds, alternating with deep breaths, are a recognised pattern in the last hours. Watching it happen is frightening the first time. It does not mean suffocation, and there is nothing to do about it.
• The rattle is about position, not about drowning. Turning the person onto their side, raising the head of the bed, and stopping any fluids that are adding to secretions all help more than anything else. Deep suction is distressing and usually counter-productive.
• Medicines exist for it and they are not urgent. If it is distressing to the room, ask — there are injections that reduce secretions, and they work better early than late. This is a call to the nursing line, not to an ambulance.
• Breathlessness that the person is aware of is different, and treatable. A fan or open window, sitting upright, calm company, and small doses of morphine all reduce the sensation of breathlessness. Morphine used this way does not hasten death, which is the fear that stops families asking for it.
• Oxygen is not automatically the answer. Where the blood oxygen is adequate it usually does nothing for the feeling of breathlessness, and a mask can isolate somebody who would rather have a face near theirs.

The box of medicines in the house

• Anticipatory medicines are drugs left in the home in advance, before they are needed, so that nobody waits hours for a prescription at midnight. There are usually four: something for pain, something for sickness, something for agitation, something for secretions.
• They are prescribed early and often never used. Having them in the house is not a statement that death is imminent, and a family that asks for them early is not giving up — it is removing the commonest cause of an uncomfortable night.
• Who may give them varies, and it matters. In many places a visiting nurse gives them; in some, trained family carers can give subcutaneous injections under a specific arrangement. Ask explicitly who will be giving these, at night, at the weekend — and if the answer is vague, that is the thing to fix while it is still daytime.
• A syringe driver is a small pump giving a steady dose under the skin. It is set up by a nurse, it is not a drip, and it does not mean sedation. If it alarms, beeps or the site becomes red and swollen, that is a nursing call.
• Ask what happens when it runs out. Who reorders, how long it takes, and who can authorise more at three in the morning. Running out of a controlled drug at the weekend is a common and entirely preventable crisis.
• Morphine for pain or breathlessness at these doses does not shorten life, and the belief that it does keeps people in unnecessary pain. If somebody in the family believes it, say it out loud and ask the nurse to answer it directly.

The four numbers, and what each one is for

When going in is right, and when it is not

• The question worth asking about any proposed admission is what will change. If the answer is a treatment that will help — draining a chest, fixing a fracture, treating something reversible — then going in is right. If the answer is observation, the balance is usually against it.
• Admission has costs that are rarely stated. Delirium, being moved between wards, unfamiliar faces, a night in a corridor, and dying among strangers instead of at home. These are not arguments against hospital; they are the other side of the ledger.
• A crisis at 3am is not the moment to make this decision for the first time. Ask, in daylight, while the person can still take part: if this happens, do we go in? Write the answer down. Families with a written answer make the same decision more calmly and more often follow the person's own wishes.
• Wanting to be at home is not the same as being able to be. If the people in the house cannot manage — exhaustion, no second person, a symptom nobody can control — a hospice bed or a hospital admission is a legitimate and sometimes kinder answer. Say so early rather than collapsing into it.
• Going in and coming home again is allowed. An admission is not a one-way door, and asking on day one about getting back home shapes what happens on day three.

The hour after

• There is no rush. None. Nothing needs to happen in the first minutes or the first hour. Sit down. Say what you want to say. Ring somebody who will come and sit with you if you would rather not be alone.
• Do not call an ambulance for an expected death. Ring the nursing line or the out-of-hours doctor, whichever the plan says. What is needed is somebody to verify the death, and that is a planned visit rather than an emergency response.
• Who may verify a death varies by country and district, and it is not always a doctor — in many places a trained nurse does it. Whether a doctor is needed for the certificate afterwards is a separate question with a separate answer.
• Washing and dressing the person is allowed, and it can be done by the family. Many people find it the most useful thing they did. The funeral director will do it instead, and either is fine.
• The body does not need to be moved quickly. Hours are normal. Open a window if the room is warm, turn the heating off, and take the time you need — including waiting for somebody who is driving through the night.
• Write down the time. Somebody will ask, and in the hours afterwards nobody remembers.

The things that have to exist before, so that afterwards is manageable

1. The four numbers, written down, where a stranger could find them. Nursing line, out-of-hours doctor, regular team, funeral director. Not in a phone; on paper.
2. The resuscitation decision, as a document, in the house. If one has been made, it has to be findable in seconds by somebody who has never been in the building.
3. The anticipatory medicines, in the house, with a note of who may give them. Including at night and at weekends.
4. Where the person wants to be, and who has been told. Written down and shared with the team, not just discussed. Preferences that exist only in a family's memory tend not to survive a crisis.
5. Who to ring for the certificate, and what the registration deadline is where you live. Deadlines and offices differ; find the number now, not on the day.
6. One person outside the house who knows all of the above. The people in the room will not be reliable narrators at four in the morning, and having somebody who can be rung and asked is worth more than any leaflet.

The drill: 16 decisions

Sixteen moments in the last week and the hour afterwards — breathing that stops and starts, a rattle at 2am, a family member who wants a drip, a death at four in the morning. Most have an instinctive answer that is kind and wrong. Pick your move; every answer explains why.

The card

Print it, fill in the numbers by hand, and put it on the fridge. It is the one thing in this whole page that works at four in the morning.

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