End of life care: Caring for someone in their last days

End of life care is an emotionally demanding experience. Even though the person you are caring for may have a long-term terminal illness, the realisation they are in their final days can still take you by surprise.

When the time comes, preparing yourself about caring for someone at the end of life will give you an understanding of what to expect, and help make their final days as comfortable as possible.

End of life care needs

A person’s care needs in their final days of life are as individual as they are. If possible, and if they want to, discuss how much involvement they want in terms of their end of life care, such as where they would like to be and what they would like to happen to their body after death.

It’s important to see a medical professional to discuss what medication they can and cannot take during their final days. For example, if they have a critical illness such as diabetes or high blood pressure, you should check if they still need to continue with their daily medication and what to do when they find it hard to swallow. In most cases, the person dying will not need to continue with their daily medication, especially if it is causing them discomfort.

You will also need to consider the individual’s religious and cultural beliefs, as these can change the way their end of life care is delivered. If possible, you should discuss this with the individual in good time so that you can give them end of life care that they would like to receive.

What to expect and how to assist them

You might find a person nearing end of life is likely to spend more time sleeping and regularly look and feel drowsy when they are awake. This is normal and isn’t anything to worry about. As their bodies slowly run out of energy, they will often drift in and out of consciousness for some time before they die, which usually starts weeks or days before they pass away.
Even if the person you care for is in and out of consciousness, you should still talk to them as they may well be able to hear you. Comforting words are reassuring and let the person know they are not alone. You can also hold their hand, read to them or play their favourite music to help provide a peaceful, soothing atmosphere.

1.    Becoming restless or agitated

As someone’s body prepares for the end of life, they may become more restless and agitated. Usually, this happens within their last few days of life. Confusion and hallucination can also be common but are entirely natural. After any episodes, they will usually start to settle and appear more peaceful again.
Many things can contribute to agitation, such as physical problems such as bowel issues and constipation. Speak to a nurse or care assistant who can recommend ways to make the person more comfortable and reduce their anxiety.
You can also try simply sitting with the person and being a calming, reassuring presence for them. Hold their hand and simply be there. 

2.    Skin colour and temperature changes

Due to reduced circulation, parts of the person's body will feel cold to touch and may swell up, such as their hands, face, ears or feet. Their body reacting this way is normal and nothing to be concerned about.
They generally don’t need warming up even if they feel cold, but you can apply gloves or socks if you feel like you need to. 

3.    Loss of appetite

When the person you care for is nearing the end of their life, it is common for them to lose their appetite and struggle to drink any liquids. No matter how uncomfortable it is to watch; this is a normal part of the dying process.
You can ease any discomfort such as a dry mouth by moistening their lips with a damp sponge (there are special types of sponges available for this) or apply lip balm to help with dry and cracking lips.
If the person you care for wants to drink, you can help them by offering a drink through a straw or via a teaspoon.

4.    Changes with breathing

Although it can sound unsettling, breathing changes are normal when reaching the end of life. As the body slowly starts to shut down their breathing will either become more slow or rattly. The changes in breathing are due to not being able to absorb or swallow normal fluids in their chest or throat.
Doctors or nurses will be able to suggest and supply medication which will help to reduce the build-up of fluids in their chest and throat.
There are various medications available to help assist with end of life care, which is always supplied by doctors or nurses and may require injections. Medication can be prescribed for at home, care homes or the hospital, wherever the person chooses to spend their final days.

Different types of medication can be given to treat pain, nausea and vomiting, noisy chest secretion, agitation and breathlessness.

Looking after your needs

Caring for someone who is dying is emotionally demanding and can affect you mentally. Take some time to process your own feelings and remember to talk to someone if you are feeling overwhelmed.

Remember its ok to feel sad or tearful during this process. Do ask for help if you ever feel you need it.

There are many resources that can assist you with the transition from life to death. You can seek support from hospices, hospitals, care homes, various charities as well as from friends and family. Taking care of yourself is an important part of ensuring the person you care for is as comfortable as possible in their final days.