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What happens at the end of life?

Everybody’s death will be different, but there are some changes that are common to the dying process.

For some people who are living with a terminal brain tumour diagnosis, having some information about the process of dying can be comforting.

Family and friends, who are likely to be with a loved one at the end, often want to know, so they know what is ’normal’ and when they should call the healthcare professionals.

However, not everyone will want to know the details of what may happen when someone dies.

It’s completely understandable if you’re not ready for this information at the moment.

If you’re unsure about whether you want to keep reading, you can always bookmark this page and come back to it later.

What to expect when somebody is dying

Every person’s experience of dying will be different, so it’s difficult to predict exactly what or how quickly any changes will happen.

Some people will decline very gradually but for others it may be very quick.

There are some changes that are common to the dying process which are likely to happen in the last few weeks, days and hours.

The changes that happen when a person with a brain tumour is dying fall into five categories:

  • Less need for food and drink
  • Withdrawing from the world
  • Changes in breathing
  • Changes that people with brain tumours may specifically experience
  • Changes which happen shortly before death.

Should I call for professional help?

Speak to your loved one’s healthcare team, they’ll know best about the circumstances when you’ll need professional help.

Make sure you ask them about this, as well as who you should call, their contact details and a back-up contact (in case you can’t get hold of the first person). You’ll also want to know who to call out-of-hours.

Less need for food and drink

Food

When someone is dying, their body’s metabolism will slow down. This means they’re less able to digest food and take the goodness from it. As a result, their appetite may reduce and they may start to lose weight.

The effort of eating may become too much. This may be either because the person is less able to control and co-ordinate their muscles causing difficulty swallowing. Or it could be simply because the person is physically exhausted. Some people may feel, or be, sick.

It can be difficult to see your loved one this way and many people’s instinct is to care for them by making sure they eat, perhaps offering them tempting meals that are their favourite.

People worry that their loved one will starve if they don’t eat.

However, because the body is shutting down, they don’t need so much food. Changes in the body of people with advanced illness are different to the changes in healthy people who are forced to go without food. People who are dying often start to lose weight even while their appetite is still fairly normal, as their body can’t make use of the food.

You may wonder about alternative ways of feeding, such as drip or tube feeding. But these forms of feeding don’t make people with advanced terminal illness live any longer. Sometimes, they can do more harm. For example, if someone is being tube fed and they are very weak in the last few days, they may bring the food back up (regurgitate) or be sick, and the food may spill over into the lungs. This is known as aspiration, and can cause choking, difficulty breathing or lung infection.

Drink

As with food, the effort of drinking may become too much, often due to difficulty with swallowing. In addition, because the body is shutting down, it doesn’t need so much water.

Many people are also catheterised when they’re at the end of life. This means a tube is inserted into their bladder to drain their urine into a bag. As a result, they urinate less, so need less fluid.

Because the body can’t handle fluid as well as before, giving them too much, such as via a drip, can overload the body, causing swelling of the arms or legs, or chestiness/noisy breathing.

What about medications?

If your loved one is having difficulty swallowing medications, there are various things that can be done, but if medication they are taking is no longer helpful, it can be stopped.

Medications that are still needed to help with pain, nausea, breathlessness, anxiety or agitation, can be given by alternative means.

If you’re concerned about your loved one not being able to take their medication you should talk to their healthcare team.

What can I do to help?

  • If they’re able to eat, you could help them to small mouthfuls of food, spread out over the day.
  • Offer them what they like, rather than what is good for them.
  • Don’t force them to eat or drink if they don’t want to.
  • Offer them ice chips or their favourite drink frozen as an ice lolly – this is often easier to cope with than a drink.
  • And if their mouth seems dry, you can moisten it with a damp sponge or a spray. The sponge can be dipped in water or their favourite drink. Using lip salve on their lips can also help.

Withdrawing from the world

For most people, withdrawal from the world is gradual.

Your loved one may experience extreme tiredness (fatigue) and spend more and more time in bed and/or asleep. They may also be drowsy and less engaged or interested in what is going on around them, when they’re awake. This is normal. You may need to draw on non-verbal cues to understand how they are feeling.

Some people become calm and tranquil. Others can become confused and agitated.

Eventually they may drift into unconsciousness. This may last for a few minutes, hours or even days.

What can I do to help?

While they’re still mobile, if they become confused or agitated, try to make their environment as safe as possible. Try not to antagonise them - if they’re refusing to do something you want them to do, ask yourself if it’s really necessary. If behavioural strategies don’t work, speak to your healthcare team, as they can give medications to help calm your loved one.

As they become confined to bed and more withdrawn, they may still be aware of your presence, so continue to talk to them. Share fond memories, and explain any care that is being given to them. You could play their favourite or soothing music, or read their favourite book to them.

Don’t be afraid to touch them. Holding their hand or stroking their head can be reassuring and calming for them.

If others come to visit to say goodbye, don’t feel you have to be sad all the time. Chat, and even joke, about general everyday things or particular memories of things you did with your loved one. It’s OK to laugh as well as cry. If your loved one can hear you, they may be reassured that you’ll be able to cope and will have support after they’re gone.

Changes in breathing

As the body slows down, its need for oxygen reduces. You may notice a change in your loved one’s breathing pattern. It may become slower, less regular and shallower. Or it could become deeper and more rapid. If your loved one is anxious or agitated, or if their tumour is in the brain stem, they may breathe faster and become breathless. And their breathing can change from one type to another in only a few moments.

Sometimes in the last few hours, there can be a sort of rattle to their breathing. This can be a bit alarming and some people find it upsetting. However, it’s quite normal and doesn’t seem to distress the dying person. It’s due to a build-up of mucus in the chest, which the person can no longer cough up.

What can I do to help?

If they’ve become agitated, just letting them know someone is there for them can help. Or you could try soothing music or a favourite pet to help relax them. Alternatively, speak to their healthcare team – they may be able to prescribe medication to help calm them.

If their breathing does become rattled, changing your loved one’s position can help, or speak to their healthcare team about medication to reduce it.

Changes that people with brain tumours may experience

As well as the changes that are part of the natural dying process, people with brain tumours may experience additional symptoms due to the tumour and increased pressure in the brain. The exact symptoms may depend on where the tumour is in their brain.

These include:

  • seizures (particularly if they had seizures previously, but some may have seizures for the first time)
  • headaches
  • focal neurological deficits. This means a particular area of the body may be affected, e.g. one side of the face, one arm, part of the tongue, vision, speech or hearing. The effect may be on movement or on the feeling in that part of the body
  • progressive cognitive deficits. This means changes in how the brain works, leading to increasing difficulties with memory and understanding, personality changes and apathy (lack of interest or concern)
  • some may experience pain
  • urinary incontinence.

What can I do to help?

Speak to your loved one’s healthcare team beforehand about these possibilities and what to do if these happen. Many people with a brain tumour will be put on anti-epileptic drugs, steroids and/or opioids (strong painkillers, such as morphine) at the end of life to help deal with these possible effects. These can lead to further symptoms, for example, morphine can cause constipation.

Changes which happen shortly before death (last days or hours)

It’s important to remember that the dying process is different for everybody.

Thinking about this can be hard, but knowing what to expect can reduce your anxiety. For many people, their final moments are peaceful, but for those who may be agitated, knowing how to deal with this can help both them and you.

In the last few days or hours, your loved one may not want food or drink. They may stop weeing or having bowel movements. Alternatively, they may become incontinent. This is particularly likely for people with a brain tumour.

Their heartbeat may become irregular or difficult to feel or hear.

Some people become agitated or restless. They may become confused and have hallucinations, or experience a type of dementia.

Their skin may become pale (almost slightly blue or purple) and mottled (coloured patches), particularly on their knees, hands and feet. It may feel moist and cool to the touch, as their body temperature drops.

In the last few hours the person’s breathing may change again, with long pauses between each breath. The tummy muscles may take over the process of breathing, so their tummy will go up and down instead of their chest.

If they’re not already unconscious, they may drift in and out of consciousness. However, they can probably still hear and feel. Some may even become clear-headed in their final hours.

Eventually, their breathing will get slower and finally stop. It can be difficult to identify the exact moment of death.

After a while, their body will relax completely. Their face may relax and they look peaceful.

They may lose control of their bladder or bowels. This can happen before or after death. Some people find this distressing if they’re not prepared for it.

Fluid may leak from elsewhere too, especially the mouth.

What can I do to help?

Let them know you’re there. Speak to them calmly and touch them gently.

If they’re confused or agitated, use soothing music or gentle touch to help calm them. If you’ve spoken to their healthcare team before this, you can arrange to have some pain relief or a sedative available to give them to ease any symptom which is distressing them.

If they’re having hallucinations or visions and it’s not distressing them, you don’t need to convince them that they aren’t there. (Perhaps they’re seeing a long-lost loved one and it’s making them happier.) If you try to convince them, they may become agitated, or may even lash out.

Talk to their healthcare team about arranging for a commode (if they’re still conscious and mobile), or pads or wipes to deal with any bladder or bowel problems. Also talk to them about who should provide this care. It may be possible for them to have a catheter to drain their wee into a bag. Or you may be able to have a care package at home to help with this, if you would like.

Gather people who may want to say goodbye.

Don't assume you'll be there at the end. People often say that, despite sitting with their loved one for hours, their loved one didn't die until they left the room, even if it was only for a short time. It’s as if they were unable to let go while the ones they loved were there.

It’s easy to feel upset or hurt by this, or to feel guilty for not being there, but they may have been trying to protect you, or it may just be coincidence. Perhaps you could say goodbye each time you leave the room, in case they die when you’re not there.

Get support

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