In the last days of life parts of your body will stop functioning properly as organs and tissues shut down. You may not be aware of what is happening – this in itself can be part of the dying process – but your carers and loved ones will be aware. Seeing the changes occurring in you can be very distressing for carers and loved ones and they may need extra support to get through this difficult and often exhausting time.
Changes carers may notice include:
Diminished need for food and drink
In the last days and hours of life you will usually not feel hungry or thirsty as your body no longer needs water and the energy that food provides.
The gut stops working properly so that any food eaten can stay in the stomach for a long time and not be digested.
This can be a very difficult time for carers as they have probably spent a lot of time preparing and cooking tempting food and encouraging you to eat to keep your strength up during your illness. It can be hard to accept that food is no longer required or that the amount of food eaten is very small.
For carers, it is important that they continue to eat and drink normally because they do need to keep their strength up – they mustn't feel guilty about eating when you can't.
It's OK to eat if you feel like it but try not to worry if you don't. It's usually OK to eat what you fancy – this is not a time to worry about special diets.
If you have diabetes, your GP or diabetes specialist nurse will advise on whether you still need to have your insulin injections or oral medication. Often these are stopped in the last days of life and there is also no need to continue with blood sugar testing.
Not wanting to drink can cause a lot of upset for carers. We've all been taught that water is essential for life so not needing to drink can be hard to accept. As you get weaker your swallowing can be affected too and this can lead to food and drink 'going down the wrong way' making you choke and affecting your lungs.
Occasionally, if you are losing lots of fluid through diarrhoea or vomiting, you may be given fluids through a drip into a vein to prevent dehydration. The decision to give fluid this way will be discussed with you and your carers and made only if it adds to your comfort and wellbeing.
Not drinking can make your mouth very dry as can some of the medication you may be having. Mouth care is very important and something that carers can help with. Simple things like moistening the mouth with a damp sponge and preventing dry cracked lips by using lip balm or Vaseline can make a difference.
Changes in bowel function
Because your gut is now not working properly, you may notice changes in your bowel habit.
Constipation is a very common problem and can cause distressing symptoms like abdominal pain and bloating. It is often aggravated by pain killing medication. Constipation can also make you feel sick. You may be given laxatives, suppositories or enemas to relieve constipation. If you are at home your district nurse will help with this part of your care. If you are in a hospice, hospital or nursing home the staff will help you.
You may also notice difficulty controlling your bowels. This is because the muscles that hold everything in have become too weak. If this happens to you, your district nurse will help your carers manage this problem so that you can be clean and comfortable.
As you eat less, the amount of faeces you produce reduces so losing control of your bowels can be less of a problem than you may fear.
Nausea and vomiting are common symptoms as the end of life approaches. Nausea is the feeling that you're about to be sick (vomit). Vomiting (being sick) can occur out of the blue without warning but often nausea comes first. Sometimes vomiting can be very severe and persistent leading to exhaustion and dehydration. These symptoms can be very distressing and cause a lot of misery at a time when you want to be calm and peaceful.
Fortunately there are a number of things that can be done to help.
Causes of nausea and vomiting
Your doctors and nurses will try to find the cause of the vomiting and see if there is anything that can be treated.
Here are some common causes of nausea and vomiting:
- Pain killing medication - especially morphine type medicines
- Chemotherapy – don't forget chemotherapy can be used in a palliative way to help relieve symptoms caused by certain types of cancer so it's possible to be on this type of treatment even in the last days of life
- Bowel obstruction
- A build up of toxins, especially if the kidneys are not working properly
- Pressure on the stomach from fluid collecting in the abdomen – this is called ascites and is common in people with liver problems and types of cancer
- Changes in the brain affecting the part of the brain that usually controls nausea and vomiting – this can happen in people with brain tumours, following strokes and often just as part of the dying process
Sometimes even when a cause for the vomiting is found, the cause itself may not be treatable. Sometimes a cause for the vomiting is not found – it just seems to be something that happens to people at the end of life.
Treatment of nausea and vomiting
If it's possible to treat the cause of the nausea and vomiting, this will be done first. For example, laxatives for constipation, reviewing the need for antibiotics or chemotherapy and stopping these if appropriate.
Occasionally, if you are losing lots of fluid through persistent vomiting, you may be given fluids through a drip into a vein to prevent dehydration. The decision to give fluid this way will be discussed with you and your carers and made only if it adds to your comfort and wellbeing.
Medication for nausea and vomiting
There are a number of different types of medication for nausea and vomiting – called anti-emetics - that work in different ways. At least one of these will be in your 'just in case' box of medication at home so it's on hand if you need it. If one type of medication doesn't work for you, it's worth trying a different type.
Here are the names of some common anti-emetics you may have come across:
The way you take the anti-emetic medication is important – clearly tablets or liquid you have to swallow will not work so well if you are vomiting but may be effective if you suffer the nausea but not the vomiting.
Some anti-emetics can be given through a patch stuck on the skin or taken in tablet form that dissolves in the mouth. Often anti-emetic medication has to be given by injection – see the section on medication for more information.
Other things to try
There are some simple practical measures your carers can try to help you to feel better. Here are some suggestions:
- Provide fresh air
- Apply a cool compress (a cool damp cloth) to forehead, neck and wrists
- Avoid smells of cooking food that can trigger vomiting – eating cold food such as sandwiches is just as nutritious as a cooked meal
- Avoid strong scents that may trigger nausea and vomiting – perfumes, after-shave, air freshener
- Avoid large meals - serve small quantities of food more frequently instead
- Encourage sipping of water throughout the day to maintain hydration – drinking large volumes of fluid in one go especially at the same time as eating can trigger vomiting
Hiccups are caused by spasm of the diaphragm, the muscle that divides the chest from the abdomen. Occasional hiccups are not usually a problem to cope with but constant hiccups can go on for hours, even days and be very distressing.
Constant hiccups lead to exhaustion and affect sleeping, speaking and eating.
There are different types of medication that may help but often it is trial and error to find one that works.
Changes in breathing
As your body shuts down you will become much less active and spend more and more time in bed. Your body will require less and less oxygen and changes in your breathing pattern are likely to occur.
Even people who have been very breathless during their illness may find that breathlessness is less of a problem in the last days and hours of life. This can be very comforting to know as many people fear that they will die gasping for breath.
Breathing often becomes slower and shallower breaths are taken. Carers may notice that your breathing rhythm becomes irregular with sometimes long pauses between breaths followed by a loud gasp.
If you do become distressed by breathlessness morphine, commonly given for pain relief, can be given to relieve your distress even if you do not have pain. Morphine will be one of the medications in your 'just in case' box if you are being cared for at home so it is readily available when you need it.
Noisy breathing – as you get weaker the muscles you use to breathe and cough get weak too. This means that the lungs are unable to clear the mucus that they normally produce. When the mucus in the chest builds up it can make your breathing noisy – it's often described as a rattle. This noisy breathing is a difficult symptom to manage and, although it is often not distressing to you, it can be distressing for carers to hear.
There is a type of medication that may help and changes of position can sometimes make a difference too.
Changes in skin
Whereas most of the body's organs are hidden inside and we can't see what's happening to them, the skin is very visible and shows signs of the dying process.
The reduced blood supply to your skin makes it very vulnerable to damage even with minimum pressure and very gentle handling. It's common to get bruising on the skin that can sometimes look quite alarming. Skin that is in contact with surfaces can develop pressure sores despite excellent skin care from carers and professional staff.
As you spend more time in bed you will find a position to lie in that is the most comfortable for you. The skin over the parts of your body that are in contact with the bed is squashed and the blood supply that is already reduced is cut off even more.
When this happens the skin dies and breaks down leaving a sore. Your carers will try to prevent this happening by encouraging you to move and helping you to turn over every couple of hours. They may notice if areas of your skin are looking more discoloured and pay particular attention to reducing the pressure on those parts.
You may have a special mattress for your bed to help reduce the pressure.
There are some things that make you even more vulnerable to developing sores on your skin. These include if you have been taking steroids or chemotherapy, incontinence, friction and infection.
Skin sores can be very painful as the nerve endings in the skin are damaged.
If you develop sores on your skin there are various ways of dealing with them so that you feel comfortable. If you are at home your GP and district nursing team will help your carers and advise on treatment. If you are in a hospital, nursing home or hospice, the staff there will look after your skin.
Colour and temperature
As you get weaker, your circulation starts to shut down so less blood gets through to your skin. This means that your skin may look pale and will probably feel cool. It's likely to be most noticeable on your hands, feet, fingers, toes, nose and ears.
Your skin may also look mottled with a bluish/purplish discolouration.
You may notice swelling of all of your body or just parts of it. Gravity helps to pull the fluid to the lowest position so if you spend a lot of time lying down you may notice that your face becomes puffy and your eyelids swell. If you spend a lot of time sitting, you may notice the most swelling is in your legs. Sometimes the swelling can be huge making your legs more than double in size and making them feel very heavy.
Sometimes some of the excess fluid trapped under the skin can start to ooze out from the skin leaving it feeling damp and clammy and contributing to the risk of developing pressure sores.
Pain, tenderness and other sensations
The nerve endings in the skin are damaged by the reduced blood supply and so they do not work properly. These damaged nerve endings send confused messages to your brain which tries to make sense of them. The result can be a range of sensations:
- Skin feels cool to touch but you feel like it's burning hot
- Skin is painful and tender at the slightest touch
- Skin feels like there are ants running up and down underneath it
- Skin feels itchy
Changes in consciousness
As you withdraw from the world your brain starts to shut down making you less aware of what is going on around you.
You will spend more and more time asleep and may be quite drowsy in the periods that you are awake. Pain killing medication may contribute to this drowsiness.
To loved ones and carers it can look like you are no longer interested in them and this can be hard for them to cope with. This apparent lack of interest is part of a natural process that you have no control over. It's preparing you for death and is often accompanied by a feeling of peace and tranquillity.
This is why it's important not to put off making plans and saying what you want to say. If you leave it until the last days of life you may not get the opportunity.
As the time you spend asleep increases, the depth of your sleep may also increase so that you lapse into unconsciousness or go into a coma. This period of time in a coma can last from hours to days. Loved ones may find it comforting to know that you can probably still hear them and feel them holding your hand even if you cannot respond. They may want to continue touching and talking to you or playing your favourite music.
Despite being in a coma, it is possible that you may still feel pain and your carers will be looking out for signs of distress so that you can continue to receive medication that can help. Signs may include being restless or moaning.
Most people do not rouse from their coma. Gradually your coma will get deeper and deeper and eventually your heart and breathing will stop and you will die.
This transition from coma to death can be difficult to detect especially as your breathing is likely to be very shallow with long pauses between breaths.
Changes with pain
Being in pain is often a big concern for dying people and their carers.
Pain is associated with many life limiting conditions and may be something that you have lived with for a long time.
You may already be receiving pain killing medications to help control your pain. This will be reviewed to make sure it is as effective as possible and changes in your medication may be suggested.
Sometimes the way you take your pain killing medication may be changed to make it easier for you – for example switching from oral tablets that are hard to swallow to liquid or skin patches or injections.
In the last days of life pain may get worse and for some people now may be the first time they've experienced severe pain. This is thought to be due to the nerve endings not working properly and sending pain messages to the brain.
There are a variety of pain killing medications (also called analgesics) available and the type you are given will depend on a number of factors:
- What you have tried before
- What you are already taking
- Whether you can manage oral medication
- Whether you are allergic to any analgesics
- Other symptoms you may have that may be affected by analgesics
- Whether you have kidney failure – this can affect the type and dose of analgesic given to you
All the health care professionals involved in your care will do their best to help with pain control. They will ask for more expert advice, for example from the specialist palliative care team or hospital based pain control team, if necessary. Whilst it is usually possible to reduce pain and make it more bearable, it is not always possible to take the pain away completely.
Bleeding at the end of life can occur. You or your carers may notice mild bleeding from fragile skin or from your gums when you eat or clean your teeth. There may be bleeding associated with dressing changes.
Sometimes serious bleeding can occur. The risk of this happening depends on the condition that you are dying from. Your specialist nurse or doctor will warn you if they think bleeding is a risk for you and give you advice on what to do.
More serious bleeding
Serious bleeding can be very frightening for you and your carers. It can happen with certain types of cancer that invade blood vessels making them bleed.
It usually means that death is very close often occurring within minutes.
Often you may be so close to death that you are not aware of what is happening. If you are aware, it can be hard to overcome feelings of panic and extreme anxiety. Fast acting medication can be given by injection to help you feel calm and to reduce anxiety.
Seeing you bleeding heavily is absolutely awful for carers and they may panic and feel helpless. Staying calm is very hard. Being warned that serious bleeding may occur is helpful because then you can be given advice on what to do and are more likely to stay calm. Simple practical measures can make a difference. It sounds obvious but covering blood with dark coloured cloths and towels does help.
If you are at home your carers will have a contact number to call – this may be for the district nurse or community palliative care nurse. She will usually come as soon as she can to help you.
If you are in a nursing home, hospital or hospice, staff will be on hand to help you and your carers.
Your brain and nerves stop working normally as the end of life approaches. This can result in a range of symptoms:
- Uncontrollable twitching and jumping or arms and legs
- Feeling restless – can't keep still
- Feeling agitated – shaking, involuntary movements of limbs and head, moaning even if not in pain
- Hallucinations – often seeing visions of loved ones who have died
- Fever – the part of your brain that controls your temperature does not work properly so you may develop a high temperature
- Itchy skin
- Sweating and flushing often worse at night
Your health care professional will advise on how to manage these symptoms. They will ask for specialist help if necessary.
Unless your doctors and nurses have diagnosed that you are in the last days of your life and spoken to you and your loved ones and carers, do not assume that any of the above changes are caused by impending death. There may be other reasons for the changes you notice. Always ask your doctors and nurses if you are in any doubt about what your symptoms mean.