The last days & hours: what to expect and how to be there

Hospice teams sometimes call this “transitioning.” The person may become weaker, sleep more and be more confused. Not everyone goes through this stage.

In the last days to hours, the person usually becomes unconscious and their breathing changes. Their skin may become darker and cooler, especially on the hands and feet.

In the U.K., this time is sometimes called the “terminal phase.”

Some conditions can cause signs that look like dying but can be treated, such as an infection or kidney problems. That is why it helps to tell the care team when you notice a change.

The person may sleep more, answer slowly or not at all, and lose interest in what is around them. Tiredness and weakness often get worse day by day.

Near the end of life, interest in food and drink usually fades, and swallowing can become hard. Food and fluids should not be forced, because this can cause discomfort or choking.

What you can offer

• Ice chips or small sips, if they can swallow
• Lip balm
• Swabbing the mouth to keep it moist

Confusion, restlessness and agitation can happen in the last days. The person may call out.

Speak calmly, remind them where they are and who is with them, and offer gentle touch. Contact the care team, who can help with comfort and distress.

People near death sometimes see or talk about relatives who have already died. Some talk about needing to travel or go somewhere.

Many families find these moments peaceful. You don’t have to correct them. You can simply ask, “Who do you see?” and listen.

Sometimes a dying person has a sudden burst of energy or clearness of mind, sometimes called a “rally.” A geriatrician writes that it can happen hours to days before death, most often in the last 24 to 48 hours.

Families may hope it means recovery. It usually doesn’t. If it happens, it can be a precious chance to talk, share a memory and say what matters.

Breathing may become shallow or irregular, or deep and fast, with pauses in between. The pauses can grow longer.

Raising the head of the bed or turning the person on their side can help.

Saliva can collect in the throat and make a gurgling or rattling sound. It is often upsetting for families, but it does not appear to be painful for the person.

Turning the person on their side and raising their head can help. Tell the care team if it worries you.

Hands and feet may feel cold and look blotchy or blue. This blotchiness is called mottling.

Mottling is harder to see on darker skin. It may look darker, purple or brownish. It can help to look at the lips, inside the mouth, or the ears.

Use blankets for warmth, but not electric blankets or heating pads.

Near the end, many people stop responding. Most people can still hear after they can no longer speak.

Less urine is common, and it may be dark. Bladder and bowel control can change. Waterproof pads help keep the person clean and comfortable.

In a 2020 study at a hospice in Vancouver, researchers recorded brain activity in people near death. Some who were no longer responsive still showed brain responses to sounds, similar to healthy young people.

The study was small, with recordings from five unresponsive patients. It can’t tell us what a person understands. But it adds to what hospice teams have long said: keep talking.

Ideas

• Hold their hand or stroke their hair, if they like touch
• Play music they love, softly
• Read a favourite book, poem or prayer aloud
• Tell family stories, and let them hear laughter

Cultural or religious beliefs and customs may be very important at the time of death. Tell the care team which ones matter to your family, both before and after the death.

Chaplains, social workers and hospice staff can support you, whatever your faith or beliefs.

Staying close by is often called keeping a vigil. It can be tiring. Unless your faith or culture asks otherwise, it is okay to take turns, rest, eat and step outside.

Brief breaks don’t need formal goodbyes. Saying “I love you” is enough.

Some people find comfort in telling their loved one that the family will be all right, and that they can rest. Others don’t feel ready to say this, and that is okay too.

There is no right script. What matters is that it comes from you.

Be open with family about what is happening, and let each person show their feelings in their own way. For children, explain simply what they may see and hear before they come in.

Ways a child can say goodbye

• A drawing or card placed by the bed
• Holding a hand for a moment
• Saying goodbye by phone or video
• Choosing not to visit, and saying goodbye in their own way

Some people are unsure what to say, or want to avoid facing what is happening. Some keep busy with meals and chores. All of this is human.

Phone and video calls can let distant family say goodbye.

Ideas

• Hold the phone near their ear
• Play a recorded voice message
• Read a letter or text aloud for someone who can’t come

Some families pray, sing, read sacred texts, or follow other customs at the bedside. Let the care team know what you need, such as space, quiet or a faith leader.

Even if your loved one can no longer reply, you can still say thank you, sorry or I love you. Many people find comfort in this later.

Phone or video calls can let you say goodbye from a distance.

You could

• Ask someone to read your letter aloud
• Ask staff or family to hold the phone to their ear
• Light a candle or say a prayer at the same time
• Record a message to be played softly

Many people feel guilt or regret about not being there. These feelings are part of grief. Try to speak to yourself the way you would speak to a friend in your place.

Ideas

• Spend time with them after the death, if you can
• Take part in the funeral, memorial or faith rituals
• Write them a letter
• Visit a place that meant something to you both

Family members may want to stay with the person for a while after the death.

Call the hospice nurse or social worker first. They can guide you through the next steps.

Doctors, hospice staff, social workers or faith leaders can explain what comes next, including contacting a funeral home.

If a home care agency was involved, call them first. If funeral plans exist, contact the funeral director and doctor.

If you call 911, emergency teams must try to revive the person unless there is an out-of-hospital DNR or POLST form. These forms vary by state, so check with the doctor ahead of time.

Tell the care team about customs or rituals that matter, such as those for caring for the body or honouring the death.