If you are caring for someone at the end of their life, it is normal to not be sure exactly how best to help them. It can be hard to know what your role as a carer should be when you aren’t able to help them get better. You may end up feeling a bit helpless.
Other carers have found it useful to focus on helping their friend or relative to be as comfortable as they can and, when the time comes, to die with dignity. For many this means ensuring that they are clean and looked after, treated with compassion and respect, suffering as little pain and discomfort as possible and surrounded by the people they love.
We cover some more specific help and support you can give to your friend of relative at the end of their life below.
One vital way you can support your friend or relative is by helping with their medical care, particularly if they are being looked after at home.
For instance, you can help by keeping in touch with their doctors. If you notice any significant changes or worsening in your friend or relative’s symptoms or condition, if they seem distressed or uncomfortable or you need some help or advice, then it is a good idea to get in touch with their medical team. Their doctors will assess whether their medication or care need to be adapted. You should be provided with contact details of who to get in touch with, including for out-of-hours support if it is the middle of the night or the weekend. Save these contact details onto your mobile when you get them or keep them somewhere safe and easy to find.
More specifically, if the person you are caring for seems to be in pain, for instance if they are grimacing, sweating, seem in distress or have a fast heartbeat or breathing rate, then you should talk to their medical team about increasing their painkillers. They will also check whether they have an infection.
It can also help if you look for signs of urine retention, where urine cannot drain out of the bladder and be passed, as this can be common at the end of someone’s life. Watch out for them having severe pain in their abdomen and for it to feel hard and bloated. If you notice these signs, then contact their doctor immediately so that they can come and put in a catheter to drain the urine.
You may find that your friend or relative feels sick or vomits due to either their condition or their medication. To help with this, you can try feeding them smaller meals more often rather than three large meals a day, and also giving them foods containing ginger or plain carbohydrates to eat like dry toast or crackers. You can also contact their medical team to see whether there are any anti-sickness medications they can provide.
It is normal for someone at the end of their life to experience constipation, sometimes due to certain medications and sometimes simply because they are eating and drinking less. If this is something your friend or relative is dealing with, you can help them by getting them to drink more water and giving them foods that are high in fibre like wholewheat bread or pasta, brown rice or fruit and vegetables. You can also talk to their doctor to see whether they want to prescribe them a laxative to help.
As they get close to the end, it is likely that your friend or relative will stop wanting to eat and drink entirely. That’s completely ok, even if it means they lose a lot of weight quickly. You should not try to force them to eat or drink. What you can do to help is to stop them getting an uncomfortably dry mouth and lips by moistening them regularly. Their nurses or carers will show you how to do this.
Alongside medical support, there are also lots of everyday practical tasks you could help your friend or relative with. Assisting with these can also give you something tangible to focus on, which might help you at this challenging time too.
For further information about how to best assist with these, take a look at our guide ‘Helping someone with everyday tasks in the home’. This includes advice and guidance about supporting someone with a range of jobs including the following:
- Help with eating and drinking.
- Help with washing, grooming and dressing.
- Help with incontinence and going to the toilet.
- Help with sleep.
- Help with cleaning, tidying, gardening and maintenance.
- Help with administration, financial and legal matters.
An important thing you can do for someone at the end of their life is to help them make plans for their final days and weeks as well as for after they have died. Although it can be very difficult for you both to discuss some of these topics, having plans in place will take away some of the burden from you of having to make decisions on their behalf at a very difficult time. It will also ensure that your friend or relative’s wishes are respected and that they have a better experience in their final days. You may even both end up finding it cathartic to talk about these things.
It is important to have these conversations sooner rather than later, in case their condition deteriorates quicker than you were expecting and they become unable to take part in these discussions.
It is a good idea to work with your friend or relative and their medical team to create an ‘end of life care plan’ also known as an ‘advance care plan’. This covers how their needs will be met as they reach the end of their life, including controlling their symptoms through treatment, managing their pain and providing them with emotional, spiritual and social support. It will allow them to die in the way that they want, meaning that it will be tailored to them and prioritise the things that are most important to them. The plan should be shared with you and any other people who help with their care.
As part of making their ‘end of life care plan’, you should discuss with your friend or relative where they wish to spend their final weeks, days and hours and who they would like to care for them. This could be at home, in a care home, hospice or hospital, or a combination of these options. Whichever they choose, they are entitled to receive high-quality care.
As part of this planning, you could use what is known as the ReSPECT process. This stands for Recommended Summary Plan for Emergency Care and Treatment and is a document where your friend or relative records their wishes. Their medical team can then use this document to guide their future treatment decisions.
Also, if there are any treatments they would want to refuse, then they should put in place something called an advance decision, also known as an advance decision to refuse treatment (ADRT) or a living will. This documents exactly what treatments they would want to refuse, for instance life-sustaining treatments like ventilation, CPR and antibiotics, and under what circumstances they would refuse them. You may want to involve their medical team in these discussions too, so that they can answer any questions your friend or relative may have about what their options are. The advance decision must be in writing and they must sign it, as well as having it signed by a witness. It might help to use this advance decision form provided by the charity Compassion in Dying. Bear in mind that this document is legally-binding and will trump any decisions you might want to make on their behalf.
Alongside their future care, you may also want to discuss arrangements for their funeral with them. Some things you may want to talk to them about include whether they want to be buried or cremated, and where they would like their final resting place to be. You could ask if there are any special clothes they want to be dressed in, any particular songs or pieces of music they want to have played, or any prayers or poems they want to be read. You could ask who they want to be invited, and if there is anyone in particular they want to make a speech, do a reading or carry their coffin.
Another thing to discuss with them is if they have any spiritual requests for when they are dying or for their funeral. You may think you have a good idea of their views on religious matters, but you might be surprised as facing death can alter these for some people. It can help to ask if they want any particular practice or rituals, if they want the input of a religious leader or if there any prayers or readings they would like for when they are dying or at their funeral.
If they find it too difficult to talk to you about these things, then you could suggest they write it down instead. If they simply cannot face it at all, then it could still help if you talk to them more generally about their values and beliefs, so that you are better placed to make these decisions on their behalf if you have to.
Sometimes there is nothing that needs to be done in terms of practical tasks, you have already put plans in place and all of your friend or relative’s medical needs are being met. In which case, it is important to just support them emotionally as much as you can.
In the earlier stages of their diagnosis and illness, this could involve helping them to talk about how they are feeling and open up about it all. People who have found out they have a terminal illness can often feel very isolated. They can find it hard to talk about how they are feeling, especially to their friends and family who are also going to be upset about the situation. But talking about it together can help you both and bring you closer together.
This can be easier said than done though. It can be difficult to know how to start these conversations. Just remember that there are no wrong ways to talk about these topics, and once you are over the hurdle of beginning the conversation it will get easier and easier to talk about. It can help if you choose to begin at a time when there isn’t anything else going on, and no-one else around so you can have some peace and quiet to talk without being disrupted. If they get upset, don’t feel like you have done something wrong or should avoid talking about it again. Crying could actually be a valuable release of emotion for them and it isn’t always something to be avoided. And don’t feel you have to talk about everything you want to discuss all at once. You can have lots of short conversations, as and when you both feel ready.
You might find that their emotional reactions to dying are not the ones you are expecting. Rather than being upset and crying, they may react by being angry, anxious or scared. They may act as though they are giving up, at exactly the point you want them to try and be strong and keep fighting. Remember that all of these feelings are completely normal reactions to dying, and there is no right or wrong way for any of you to deal with this very challenging situation. Just try and continue to listen to them, acknowledge how they are feeling and reassure them that it is all normal.
Sometimes the best way you can provide emotional support for your friend or relative is by finding someone else for them to speak to as well. You could arrange for them to talk to a counsellor or a religious leader, if that is something they would like. You could also suggest they call the Samaritans on 116 123, if you think they would find it helpful to speak to someone there.
As they get near to the end of their life, providing emotional support could involve just sitting with them and being close to them. Even if they are not very lucid, they may still be able to hear you and know that you are there with them. So talk to them, even if it feels a little strange at first. Tell them what you are doing and who is with them, and encourage any visitors to talk to them too. Tell them how you are feeling and any fears you have. Talk about your memories of the times you have shared together. Talk to them about how much you love and care about them, and all the things you want to tell them before they die. If you find it too hard to speak to them, you could try holding their hand or brushing their hair to show them how much you care in that way instead. Being there with them in those final hours can be very challenging, but it is an incredible thing you can do for them and you may end up getting comfort from the experience too.
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.