What to expect in the last days of life, and what helps

Families who sit with someone in their last days often say the hardest part was not knowing what they were seeing. Was the breathing a sign of pain? Should they make him eat? Was it time to call everyone in? This note describes the changes that are common near the end of life, what they usually mean, and what helps, drawn from the National Cancer Institute’s guidance for families. Every person is different. The changes don’t always come in this order, and not everyone has all of them. Your hospice nurse is the best guide to what’s happening with your loved one.

Sleeping more, and drawing inward

In the last days, people often withdraw and spend more time sleeping.¹ They may be harder to wake, and when they’re awake they may seem less interested in what’s going on around them.

This is part of the body slowing down, not a sign that someone has stopped caring. Sit with them, hold their hand, talk to them in a normal voice. Most people can still hear after they can no longer speak, so keep talking and touching even when they don’t respond.¹

Eating and drinking less

People near the end of life often lose the desire to eat or drink, and they may turn away food and fluids.¹ For families this can be the hardest change to accept, because feeding someone is how we care for them.

The body’s needs are changing, and forcing food or fluids can cause discomfort or choking.¹ Offer small sips or ice chips if the person wants them, and keep their mouth and lips moist.¹ Ask the hospice nurse to show you how to do mouth care. It’s one of the most comforting things a family can do.

Changes in breathing

Breathing often changes in the last days. It may become irregular: very shallow, then deep and rapid, with short periods of not breathing at all.¹ The pauses can be frightening to watch. They’re common, and on their own they don’t mean the person is struggling.

Near the very end, a gurgling or rattling sound can come from the throat when saliva and other fluids collect there, because the person can no longer swallow or cough them away. It doesn’t seem to be painful for the person, but it can be very upsetting for those at the bedside.¹ Raising the head of the bed, propping the person up with pillows, or turning them to one side often helps.¹ The hospice nurse can also suggest medicines that reduce the fluid.

If breathing looks hard, with the person gasping or working to breathe, call the hospice. Breathlessness can be treated, and that call shouldn’t wait.

Changes in the skin

As circulation slows, the hands and feet may become blotchy, cold or bluish.¹ The color can spread up the arms and legs, and the skin may look mottled. Keep the person covered with a light blanket, but there’s no need for heating pads, which can burn skin that can’t feel heat well.

Confusion and restlessness

Some people become restless or agitated in the last days. They may pick at the sheets, try to get out of bed or seem confused about where they are. Others seem confused and withdraw.¹ Some talk to people who aren’t there.

Speak calmly, tell them who you are, and don’t argue about what they see. If restlessness won’t settle, call the hospice. It can be a sign of pain, a full bladder or something else the nurse can treat, and there are medicines that bring calm.

Less urine

As the body takes in less and the kidneys slow down, people pass less urine, and it may be dark.¹ The hospice nurse watches for a full bladder, which can be uncomfortable, and can help if a catheter would make the person more comfortable.

Pain

Not everyone has pain at the end of life, and pain that’s present can be treated. Watch for frowning, moaning, guarding a part of the body or restlessness when moved. Hospice provides the medicines for pain and symptoms and teaches families when and how to give them. If you think your loved one is in pain, call. That’s what the line is for.

When to call everyone in

There’s no exact clock. The changes above can unfold over days or over hours, and some people rally for a short time near the end, waking up, talking or asking for food. If family members want to be there, ask the hospice nurse what they’re seeing. Nurses can’t predict the hour, but they can often tell you when the time is getting close.

Some people die when their family has stepped out of the room for a few minutes. If that happens, it isn’t a failure, and it isn’t something anyone did wrong.

Taking care of yourselves

A vigil can last longer than anyone expects. Take turns sitting with your loved one so everyone sleeps. Eat something. Step outside. Tell the hospice team if you’re running on empty: the social worker, the chaplain and volunteers are there for the family too, and the nurse can tell you what to watch for while you rest.

When death comes

At home on hospice, the person’s death is expected, and there’s no need to call 911. Call the hospice. A nurse comes to the home and helps you with what comes next, including calling the funeral home when you’re ready. There’s no rush. Many families take time to sit with their loved one, say what they want to say, and gather.

After

Hospice doesn’t end with a death. Medicare requires hospices to offer grief support to the family for up to a year afterward.² The social worker and chaplain can help with the first days, and the bereavement team stays in touch through the year.