When a loved one is nearing death, what can you expect and what should you do?

A patient in a hospice and his family

Our new research, published today, has revealed that one of the biggest concerns people have when someone close to them is dying is not knowing the signs that show death is near, followed closely by worries around how they should act.

Sue Ryder Leckhampton Court Hospice Director Elise Hoadley gives this advice.

1. What are the signs that someone is close to death?

Although everyone is different, there are some common things that happen as part of the natural process of dying. At this stage the person who is dying may be unaware of the changes, but it can help those who care for them if they know what to expect.

It can be very difficult to see these changes happening to someone you love, but they do not mean that the person is uncomfortable or in distress. The changes are a natural part of the dying process.

The healthcare team will do everything they can to make sure that you or your relative or friend is as comfortable as possible.

Wanting to eat and drink less

People who are dying do not seem to need as much energy from food, and do not need to eat and drink as much as someone who is well. It is a natural part of the body slowing down.

The best thing to do is to let them eat and drink as much or as little as they want – even if it is only a teaspoon-full. It’s fine if they don’t want anything at all.

Sometimes people stop eating days or even a couple of weeks before they die. Sometimes a person may have trouble eating and swallowing, and, if this is the case, the healthcare team may make suggestions to help them.

Withdrawing from the world

As people become close to death, they often seem less in touch with what is going on around them. They may talk less and be less able to concentrate or do things they would normally do, like reading the paper.

Sometimes a person can be quiet all day with their carer, but brighten up and chat more when someone else comes to visit. This is a sign that they feel safe and comfortable with the person looking after them. They don’t have the energy to sustain that level of social engagement the rest of the time.

Sleeping more or being semi-conscious

People who are dying may become drowsy and sleep more, and for more of the time.

Even if they do not seem to be awake, they may still take pleasure from hearing a loved one’s voice or the usual sounds of life – such as music or favourite TV shows. You can provide care and reassurance by talking to them, holding their hand, and telling them when you enter or leave the room.

This can be a good time to give them permission to let go and to say goodbye.

Changes in breathing

Often, a person’s breathing changes quite a bit in the last days and hours of life. It can become more laboured or their breaths have a pattern where they become more rapid, then slow right down – with long moments when they don’t breathe.

Their breathing can become noisy and make a rattling sound. This sound is caused by a build-up of fluid at the back of the throat. Although this can be distressing to hear, it does not usually cause them any discomfort or distress. Sometimes propping their head up on a pillow and turning it to one side can help the fluid to drain away.

These changes in breathing might start five minutes before someone dies, or can go on for 24 hours or more – everyone’s different.

Restlessness and agitation

Sometimes people can become restless or agitated shortly before their death. Their doctor or nurse will make sure they have the medication they need to prevent them being in pain, anxious or frightened.

Cold hands and feet

In the final hours, the person’s hands or feet may become cool to touch and paler or bluish in colour. This happens because their circulation is slowing down. They may like a blanket or thick socks to help to keep their feet warm.

2. What can I do to support my loved one in their final days and weeks?

Death can be sudden, so we can’t all plan what happens in the last days and weeks of life – but if you do have more time here is some advice. It all revolves around the wishes of your loved one.

Talk to them about their end of life wishes and treatment/care

Discuss what they want to do before the end of their life and see if their final affairs are in order. You may have done this already but it’s never too late.

Some questions to consider would be:

  • Where do you wish to spend your last days – at home, in a hospice, in a hospital, in a care home or somewhere else?
  • Is there anything special you want to do in this time – anywhere you would like to visit, people you’d like to see, music you’d like to hear etc.?
  • How do you want to be cared for and what medical support do you want? Are there any treatments you don’t want?
  • What sort of funeral do you want?
  • Have you made a Will and are you happy with it?

Being there and making them comfortable

Most studies and experience show that people don’t want to be alone during their final days and moments. You don’t always have to be in the same room all the time or having a conversation – but you are there for them.

Get advice from health or care professionals about when, and how, to comfort them physically – such as offering water or keeping parts of their body warm.

Ask for extended time off work if you need it

Whilst you do not have a legal right to take a ‘career break’, your employer may have a policy that allows people to request a period of unpaid leave during which your job is kept open for you.

It’s also worth remembering that your local authority has a legal duty to ensure that appropriate care or support is available if you want to stay in your paid job or return to paid work.

Look after yourself

Facing the death of a loved one can be distressing and take a toll on you, both mentally and physically – so remember to look after yourself.

Try to get enough sleep, eat as best you can and seek support for your emotional wellbeing if you need it.

Seek emotional support

Help such as carers’ groups, counselling and complementary therapies can be available for free.

Sue Ryder has a supportive online bereavement community at www.sueryder.org/support.

A safe, anonymous space to talk for people who are dealing with the loss of someone they care about, it is a place where people like Wynne and Debbie share what they’re going through and lend their support to others. Please reach out if you need someone to talk to 24/7.

Elise Hoadley

Hospice Director

Elise Hoadley