What Happens in the Last Days of Life?

There is no exact timetable

One of the hardest things about the last days of life is not knowing exactly how much time someone has left. Even when someone has been given a prognosis of days, it is not possible to predict precisely when death will occur.

The dying process is different for every person. Someone may remain relatively stable for a while and then deteriorate quickly. Another person may gradually become weaker over several days.

Sometimes a person may appear to improve temporarily. This does not necessarily mean that they are no longer dying. If you are unsure what is happening, ask the person’s doctor, nurse, hospice or palliative care team.

The person may gradually spend more time asleep

During the last days, someone may spend much of their time sleeping or resting. They may have very little energy for conversation and may not want to interact with other people. There is no need to keep them awake for the sake of having conversations or visitors.

If they are comfortable sleeping, allowing them to rest is usually appropriate. When they are awake, you can spend time with them in whatever way feels natural.

You might:

Their priorities may change

Someone who is dying may no longer be interested in the things that mattered to them previously. They may not want to watch television, use their phone, have visitors or talk about everyday matters. They may become more interested in memories, relationships or simply being comfortable.

Try to follow their lead. If they want company, be there but don’t feel you have to be with them all the time. If they want quiet, give them quiet. They will let you know if they want to talk.

Food may no longer be important

It can be particularly difficult for families when someone they love stops wanting food as this is how we nurture those we love. For much of our lives, offering food is one of the ways we show care. So it can feel as though we are failing someone if we don’t encourage them to eat.

But towards the end of life, eating often becomes less important to the body. If the person wants food and can eat safely, you can offer small amounts of whatever they enjoy but if they don’t want food, there is usually no need to persuade them. Comfort and choice become more important than maintaining a normal eating routine.

You may need to think differently about drinking

The same applies to fluids. Someone may want occasional sips, or they may no longer want to drink. If they can drink safely and want to do so, offer them drinks according to their wishes.

As swallowing becomes more difficult, giving drinks may not always be safe. Their healthcare team can advise you about this and about mouth care. Keeping the person’s mouth and lips comfortable can become an important part of caring for them. If you are caring for someone at home, ask the healthcare professional supporting you to show you what to do.

You may notice changes in how they communicate

Someone may gradually find it harder to communicate.

They might:

• speak less
• use fewer words
• answer questions with a nod or gesture
• become unable to speak
• communicate through facial expressions or touch

Don’t assume that because someone cannot respond, they cannot hear or understand what is happening. You can continue to talk to them normally. Tell them what you are doing, introduce people who arrive. There is no need to talk constantly. Your presence can be enough.

Visitors can be helpful — or overwhelming

Families sometimes feel that everyone should have an opportunity to visit but the person who is dying may not want a constant stream of visitors. They may become tired very easily and it is perfectly acceptable to limit visitors, shorten visits or ask people to wait.

You might create a quiet environment where only a few close people are present. If the person is unable to tell you what they want, consider what you know about them and what they would probably prefer. The aim is not to satisfy everybody who wants to visit, often people who have not visited for years will get in touch. You don’t have to allow all visitors, The focus should be on the person who is dying.

There may be things they want to say

The last days can provide opportunities for conversations that might otherwise never happen. Some people want to talk about their illness or death while others don’t. Some may want to say goodbye, resolve an old disagreement, express love or talk about memories.

If the person wants to talk about death, you don’t necessarily need to change the subject or reassure them that everything will be fine. You can be present and simply listen.

Practical care may gradually become more important

As the person’s needs increase, they may need more help with everyday care. This might include:

• washing
• changing clothes
• repositioning
• continence care
• mouth care
• taking medication
• keeping their surroundings comfortable

If you are caring for someone at home, ask the healthcare team what equipment or support may be available. You should not be expected to manage everything yourself. Community nurses, hospice teams, GPs, carers and other professionals may be able to support you.

An End of Life Doula may also be able to provide practical, emotional and non-medical support to the person and those close to them.

Medication may change

During the last days of life, someone may no longer be able to take medicines in the way they normally have.

Their healthcare team may review their medication and decide which medicines are still helpful and which are no longer necessary. Some medicines may be given in a different way if swallowing becomes difficult.

You should not stop or change prescribed medication yourself unless you have been advised to do so by the appropriate healthcare professional. If you are unsure about any medication, ask.

What if the person becomes restless or distressed?

Sometimes a person becomes restless, agitated or confused towards the end of life and this can be upsetting to witness.

Try to create a calm environment and avoid unnecessary noise or activity. Speak gently and reassure them.

However, don’t assume that restlessness is simply “part of dying”. There can be different causes, including pain, infection, medication effects, difficulty passing urine or other problems.

Tell the healthcare team if someone becomes newly restless, agitated or distressed so that they can assess what may be causing it and provide appropriate care.

What if family members disagree?

The last days of someone’s life can bring strong emotions. Family members may disagree about:

• what the person would want
• whether they should be encouraged to eat
• who should visit
• where they should be cared for
• whether to call the doctor
• what treatment should be given

If possible, bring the person’s wishes back to the centre of the conversation. What did they say they wanted? Did they do any advance planning in the form of an Advance Statement or ADRT? Is there a ReSPECT form or care plan? Do they have a Lasting Power of Attorney for Health and Welfare and do they have permission to make decisions about end of life care?

If you are unsure, ask the healthcare professionals involved in their care to help.

Looking after yourself matters too

It is easy to become completely focused on the person who is dying but if you are caring for someone you love, you also need care.

Try to:

• eat something regularly
• drink enough
• rest when you can
• accept offers of help
• leave the room occasionally
• talk to someone you trust
• ask healthcare professionals for support

You do not need to sit beside someone every minute. Taking a short break does not mean that you are abandoning them and often people will wait for everyone to leave the room before taking their final breath.

How will I know when death is very close?

As someone moves into the final hours, you may notice further changes. The person may become increasingly unresponsive and their breathing may become very irregular.

If you want to understand the physical changes that can occur as death approaches, our guide What Are the Signs That Someone Is Dying? has more information.

What if I am frightened?

It is completely understandable to feel frightened when someone you love is dying. You may never have seen someone die before or you may worry that you will do something wrong.

If you are uncertain or worried, ask and if you don’t understand what is happening, ask them to explain it again. There is no such thing as a silly question when someone is dying.

You don’t have to make the last days perfect

There can be a lot of pressure to make someone’s final days special. You might feel that you should have meaningful conversations, create memories, have everyone together or say everything that needs to be said.

This isn’t always possible. Someone may be sleepy and family members may be exhausted or disagree. There may be ordinary conversations, silence, tears, laughter, television in the background or a cup of tea beside the bed.

There is no right way to spend the last days of someone’s life.

When should I contact the healthcare team?

Contact the person’s GP, community nursing team, hospice or palliative care service if:

• you are worried about their comfort
• they appear to be in pain
• they become newly confused or distressed
• you are worried about their breathing
• they cannot swallow their medication
• you are unsure what to do
• you need help caring for them
• you think they may be approaching the final hours of life

If you have been given a specific number to call for end-of-life support, keep it somewhere easy to find.

If there is an emergency and you cannot access the appropriate healthcare team, call 999.