When someone becomes less well, everything is done to promote their comfort and to make life as normal as possible.
Everyone is different and will experience this part of their life in an individual way. The end of life can be a highly emotional and incredibly difficult time for all of those involved; however, it is a really important part of life which needs thoughtful planning and care to ensure that the experience is as comfortable as it can be.
Some days will be different than others, so taking each day at a time is important. These are guidelines only, and the person you care for may not necessarily experience all of the symptoms discussed or in the order they are written.
The aim of this leaflet is to answer some of the questions you may have about why they are experiencing these changes and offer some solutions which may help to provide comfort to the person you are caring for.
However, if you have any further questions, please do not hesitate to ask those who are caring for your relative or friend.
Food and drink
People who are approaching the end of their life are supported to eat and drink as long as they wish. As time goes on you may find that they do not want to eat or drink. This can be a sign that they are less well. You may find this difficult but it is perfectly normal and struggling to get someone to eat and drink can be more distressing.
Tastes may change, so that food they once liked may now be unpalatable. They may ask for breakfast at teatime. It doesn’t matter what is eaten, whatever is fancied is fine. Eating small snacks during the day may be easier than attempting normal meals.
Sometimes people are able to manage softer foods more easily.
Drinking is more important than eating. Gradually though, people stop drinking and this can be a further indication of the time they have left. Whilst it is still possible, small sips of fluid can be encouraged, but this should not be forced. This is a natural course of events when someone is becoming more poorly. Your nursing team can offer advice.
Mouth care
If you feel able, we would encourage you to become involved in your loved one’s care. One way of making them more comfortable is to carry out mouth care.
If you notice they have dry lips, you can apply Vaseline or lip balm to their lips.
A dry mouth can be helped by
having cold drinks, or frozen fruit juices. Fizzy drinks are often appreciated as are any other tipple or beverage that is requested as this can be pleasurable and normal. Frequent sips of fluid should be provided if tolerated well or they may be able to suck on an ice cube or lolly.
If your loved one is unable to swallow, you can freshen up their mouth with a soft toothbrush or mouth swab dipped in any of the above.
Their tongue may appear coated, and this can be cleaned using a soft toothbrush or swab with a small amount of toothpaste or mouthwash. If this is painful, you can just use tap water. If possible, do this after meals. Your nurse will explain and demonstrate how to do this.
A coated tongue may also be a sign of oral thrush and your nurse will check regularly for this and will treat as necessary. This unfortunately can be very common.
Medications and managing symptoms
When someone is reaching the end of their life it is best to minimise disturbance and distress. Your doctors and nurses will advise on any interventions required and those that are not. It is likely that many of the medications your relative or friend may have been taking will be stopped at this stage as they will no longer be of benefit and may be difficult to take.
Common symptoms may include breathlessness, pain, nausea, and agitation. Your nurse will ask about any symptoms you or your relative or friend have been aware of, and medications can be given to alleviate these symptoms. Whilst the person is still able to swallow, tablets or liquid medicines will continue to be prescribed by your GP. However, if they are unable to manage these, there are other ways medicines can be given.
Medications can be administered by a small injection when required, or in some circumstances, a syringe driver may be used. This is a small electronic pump which holds a syringe containing the medications required to keep symptoms under control. It allows medicines to be given continuously under the skin and if this is assessed as being appropriate, more information will be provided.
Going to the toilet
Even if people are not eating and drinking at all, our bodies still make waste matter. It will therefore still be necessary for your relative or friend to have their bowels opened, though probably not as often as before. Lack of food, reduced mobility and some types of drugs being taken may also contribute to constipation. Please inform your nurses if there are any difficulties with bowel movements, the nurses will discuss this with you and decide if it is necessary to start any treatment.
As people begin to drink less, they need to pass less urine. The urine may appear quite dark and strong and sometimes the person you are caring for may stop passing urine. Please discuss any concerns with your nursing team. In some cases it may become necessary to pass a catheter into the bladder to drain the urine for their comfort. You may find it necessary to use pads to collect urine, if this is the case please speak to your nurse.
Maximising comfort
Whilst able to do so, most people prefer to be up and about. Gradually, they will be able to do less, perhaps walking for only short periods or maybe only sitting in a chair.
Whilst they are still able, it is usually good to encourage them to get dressed and tend to their own personal needs as able. As the person becomes weaker and less mobile, they often spend more time in bed and it will become necessary to offer help with washing, bathing and cleaning teeth. If this is the case, please speak to your nurses who can discuss equipment and services available to help with this.
Resting and sleeping
Becoming sleepier is usually a sign that the person is becoming more poorly. People get tired very easily so short visits and conversations are better. They may begin to fall asleep during a conversation. Just sitting with them and not talking at all may be more relaxing. Holding hands or resting your hand on them can be comforting to you both.
Gradually, sleep will occur for longer and longer periods and the person may become unconscious. It is known that even when unconscious, people may be aware of those around them, so if you feel able and comfortable doing so, we would encourage you to talk to them as normal. Don’t say things which you would not want them to hear.
Physical contact is important, touch in general is a way of letting your friend or relative know you are there.
When death is imminent
You may notice that their breathing pattern has changed – it may become more laboured or shallow, with longer pauses between each breath. Often the person may feel cool to touch and their skin colour may become very pale or slightly blue. Sometimes it may sound as if they need to clear their throat and while this may sound distressing to you, it is not usually distressing for them. A drug can be administered by the nurses to help dry up the secretions causing this rattling or bubbly noise. A change of position may also help.
It is impossible to say exactly when someone will die, as the signs described above are only an indication that someone’s life is drawing to a close and this happens more quickly with some people than others.
As the person nears the end of their life you may wish to be present, but if you do not, that is fine. You will feel a mixture of emotions and although you may have felt prepared for your loved one’s death, you may experience a lot of unexpected feelings.
Feelings and emotions
It may be hard for you to come to terms with all the changes happening. There may be a mix of emotions which are hard to cope with and understand. It may help to talk, share your feelings or to cry. You may prefer to find someone else to talk to, don’t hesitate to seek them out or to ask someone. You may want others around you, or you may find you prefer some privacy. There are contact details at the end of this leaflet with service providers who can also offer you support if this is something you may find helpful.
What happens when my relative or friend has died?
You may be with them when they die. Stay with them a while if you would like to, either on your own or with someone else. If you have never seen someone after death, you may wonder what to expect. They will look very pale, and their skin will gradually feel colder.
Who should I contact when my relative or friend has died?
When someone has died at home, you will need to contact the GP or your community nursing team who may then visit and verify the death. If you have been supported by the community nursing team and/or a care agency, you may wish to call on them so they can offer you some support at this time.
The nurses will be able to offer you a booklet which has been produced to provide you with all the information and contact details that you will need.
When you are ready, you may want to contact your chosen funeral director, who will arrange to collect your relative or friend from home. If you want to arrange the funeral without the support of a funeral director, you can contact your local authority for guidance.
Useful contact numbers and websites
Brigitte Trust: Supporting people facing life-threatening illness and their families with emotional and practical help www.brigittetrust.org 01306 881816
Crossroads Care Surrey: Providing support and respite for unpaid carers and end of life services www.crossroadscaresurrey.org.uk 01372 869970
East Surrey Macmillan Cancer Support Centre: Located at East Surrey Hospital offering support and advice for people with cancer and their families and friends www.macmillan.org.uk 08088080000
Jigsaw South East: Supporting children, young people and their families facing the death of a of a family member www.jigsawsoutheast.org.uk 01342 313895
Marie Curie: Providing care and support to people with any terminal illness and their families www.mariecurie.org.uk 08000902309
St Catherine’s Hospice: Hospice care in West Sussex and East Surrey on wards or in your own home www.stch.org.uk 01293447333
First Community provides front-line NHS community healthcare services in east Surrey and parts of West Sussex.
We provide first-rate care, through our first-rate people, offering first-rate value. For more information visit: www.firstcommunityhealthcare.co.uk
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For office use only: Version 2 PFD_ASC001 Publication date: December 2022