End of life signs
For some people who are living with a terminal brain tumour diagnosis, it can be comforting to have information about signs of the end of life and what to expect.
Family and friends, who are likely to be with a loved one at the end, often want to know the end of life signs. This is 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 is dying.
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.
And, if you need more information or just someone to listen to you, we’re here for you.
What to expect at the end of life
In this Marie Curie video, nurse Maria describes the common changes that you might notice in someone’s last weeks, days and hours of life.
If you’re caring for someone who is dying, you might find that there are some things you can relate to. But you might find that you don’t notice these changes or that you notice them at different times – everyone’s experience is different.
What end of life signs to expect when somebody is dying
Should I call for professional help?
Speak to your loved one’s healthcare team. They’ll know best about 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.
End of life signs
Every person’s experience of dying will be different. So it’s difficult to predict exactly what changes will happen, or how quickly.
Some people will decline very gradually but for others it may be very quick.
But, there are some common end of life signs in the last few weeks, days and hours.
There are five categories of changes that happen when a person with a brain tumour is dying:
- 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.
We’ll take a closer look at each of these below.
Less need for food and drink
One sign that someone is dying is that their body’s metabolism will slow down. This means they’re less able to digest food and take the goodness from it. This means they might feel less hungry and could start to lose weight.
The effort of eating may become too much. This might be because the person is less able to control and co-ordinate their muscles, making swallowing difficult. 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. This is because 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.
As with food, the effort of drinking may become too much near the end of life, often due to difficulty with swallowing. Plus, 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 showing end of life signs, 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’s 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 know that you’re there, so keep talking to them. Share happy memories and explain any care that’s being given to them. You could play their favourite music, soothing sounds, 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
Near the end of life, 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 end of life signs that are part of the natural dying process, people with brain tumours may have more symptoms. This is because of the tumour and the extra pressure in the brain. The exact symptoms may depend on where the tumour is in their brain.
- seizures (particularly if they had seizures previously, but some may have seizures for the first time)
- 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
- uncontrollable weeing
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. Marie Curie have some information on managing pain at the end of life.
Changes which happen shortly before death (last days or hours)
The things that happen when someone is dying can be different for everybody. It’s important to remember this.
Thinking about this can be hard, but knowing what to expect can help calm you. 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 needing the toilet. Or, they could lose control of their bladder or bowels. This often happens to 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.
Should the be 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. If you’re worried about this, you could say goodbye each time you leave the room, in case they pass away when you’re not there.
Have you planned for the end of life?
It’s often very sad to think about someone dying. But, some people can find it helpful to plan for the end of life before it’s too late. This lets them spend time with the people they care about or do some of the things they love.
We have helpful information on our site that might help you in preparing for the end of life.
There is also some helpful information on difficult conversations to have, like how to talk about dying with a child.
You can also look into palliative care, which helps people with serious illnesses live better. You can find out more about palliative care and end of life care here.
- You and your family should talk to your medical team about how they will manage your symptoms. This will include knowing who to call with any questions or concerns. Your symptoms will be well managed but if not you should speak to your team.
- Find out about end of life signs and what may happen. Some people find it really comforting to have this information and it can help to avoid unnecessary trips to the hospital, which can be distressing.
- Talk to your GP or palliative care team about accessing emotional support. This can be a difficult time for you and your family, and there are specialist counsellors who are trained to support you all at this time.
- Talk to your palliative care team about bereavement support and resources local to you.
- Talk to your team about the possibility of leaving your whole brain or tumour site to research after you die.
- What support is available to me? Who can I talk to about how I’m feeling?
- I’m worried about paying for my funeral, is there any support that I can have? Is there other financial support available?
- What can I do to prepare for my own or my loved one’s end of life?
- What can I expect next? What am I likely to experience?
- Can I donate my tumour tissue to research?
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