When you find out that a friend or relative is terminally ill, it is common to want to know what will happen next so that you can feel more prepared for what is to come.
Although your friend or relative’s situation will be unique to them and their illness, many people experience similar things when they reach the end of their life.
Below we explain a bit about what the coming days, weeks and months might involve. In particular, we discuss who will be looking after the person you care for, some of the terms you may come across as well as the most common physical symptoms they will experience at the end of their life.
You may find it difficult to read some of this information, but it could also help both you and the person you care for if you feel as prepared as possible.
Whilst caring for someone at the end of their life, you will likely come into contact with a range of different people, all working together to support your friend or relative.
If they are being looked after in their own home, their GP will likely be your main contact point. They will be able to give prescriptions for medications and arrange some of the other medical support your friend or relative needs. You will also likely interact with a district nurse. The district nurse will probably arrange for other people to come and help look after your friend or relative at home too, including community nurses and carers. The nurses will help with things like administering medications, changing dressings and dealing with stomas and catheters. Carers can support with other things like helping your friend or relative to eat and drink, wash, get dressed and go to the toilet.
Wherever your friend or relative is being cared for, they may also receive specialist support from hospital doctors or palliative care specialists. They may get treatment from a physiotherapist to help them to deal with the physical effects of their illness and counsellors to help with the emotional impact. You may also interact with a social worker employed by the local council who might be able to arrange other care and support services. If they desire, your friend or relative may also be seen by a chaplain of the faith of their choice or of none.
Palliative care is a term that you may hear used quite a lot by those looking after your friend or family member, but its meaning may not have been explained to you.
Palliative care is the help that someone receives when they have a terminal or life-limiting illness to ensure that their quality of life is a good as it can be. It often focuses on relieving their pain, discomfort and distress.
Palliative care can also entail providing social, psychological and spiritual support to the person who is unwell and to those who are close to them, in what is known as a holistic approach.
Palliative care isn’t just for the very end of someone’s life. Your friend or relative could receive palliative care at any point in their terminal illness and for any length of time, from a few days to a number of years. Just because they are receiving palliative care, it doesn’t necessarily mean that they will die soon.
End of life care is the support that is given in the final months, weeks and days of someone’s life. It is focused on the very final stages of their illness.
The aim of end of life care is to help your friend or relative to live as well as possible until they die, and then to allow them to die with dignity.
It could include medical treatments to control their symptoms as well as palliative care to improve their quality of life.
Some people find it helpful to know what to expect in their friend or relative’s final few days and hours so they can be prepared for what is to come. Here we discuss some of the most common things people experience at the end of their life. If you would like to find out more specifically what might happen with the person you care for, then it is best to speak to their GP.
It is likely that your friend or relative will not feel much pain in this final stage of their life. This may be because their condition doesn’t cause them any pain or it could be because their medical team will be providing them with painkillers to take it away for them.
They may be very tired and drowsy and not seem very present or lucid a lot of the time. They may drift in and out of consciousness. They may not always recognise you and they may talk about or even seem to be seeing people they knew previously, some of whom may even have died a long time ago.
It is likely they will not eat or drink very much. They may find it hard to swallow medicine and they may lose control of their bowels or bladder.
They may experience what is known as ‘terminal restlessness’. This can include seeming agitated, confused or twitching and wanting to get up even if they are not physically able to. It could be caused by their illness, medication or emotional distress. A nurse may be able to provide sedatives to help.
They may get cold hands or feet due to poor circulation, and their skin might turn slightly blue, which is known as cyanosis.
Their breathing might sound noisy and it may have a rattle to it. This can be upsetting for you to hear but will not be causing them any distress. They may develop what is known as ‘Cheyne-Stokes breathing’, which is when they alternate between deep, rapid breaths and shallow slow breaths.
If your friend or relative is being supported by what are known as ‘life-sustaining treatments’ such as a feeding tube or ventilator, at some stage their medical team will need to decide when to remove these treatments and allow them to die peacefully. They should update you as your friend or relative’s condition changes and keep you involved in the decisions that need to be made.
The final moments of your friend or relative’s life will likely be very peaceful. Their breathing might become slow and they might have long pauses between each breath. They will finally stop breathing altogether, and their body will completely relax.
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