End of life care
Coping with a terminal illness
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What is end of life care?
There is no right or wrong way to feel when you hear bad news about your condition. You might feel numb at first, and unable to take in the news, or calm and matter-of-fact about dying.
As time passes, you may experience a range of emotions. It's normal to feel some or all of the following:
You may also feel isolated and alone, even if you have family and friends around you.
You might not experience all of these feelings and, if you do, they will not necessarily come in any particular order. Whatever you feel, you do not have to go through it alone.
Getting your diagnosis
Hearing that your illness cannot be cured can be a frightening experience. Many people will be unable to take everything in. If you are alone in the consultation, ask if you can bring a relative or friend in to hear everything the doctor has to say. This may involve asking for a follow-up appointment so that someone can be with you.
Ask the doctor what support is available to you. They may refer you for additional specialist palliative care alongside the care you are already receiving.
Your GP will also know of any local sources of support. Get in touch with your GP to explain what has happened and ask what help is available near you. This may include:
- information services about your illness
- financial benefits you may be entitled to
- support groups and counselling
You can use the Find Me Help service on the Dying Matters website to find support near you.
Find someone to talk to
Not everyone wants to talk about what they are going through. However, a terminal (sometimes called life-limiting) diagnosis can bring up worries and fears, and it can help to talk about these so they do not start to feel impossible to deal with.
Friends, family and health professionals
You might want to talk to your partner, family, or friends, or to a doctor, nurse, counsellor, or religious minister.
People close to you will be dealing with their own feelings about your diagnosis. If you or they are finding it hard to talk about it, you might want to talk to someone less close to you, like a counsellor. Your doctor or nurse can help you find one, or you can search for counselling services in your area.
It can be useful to have someone to talk to at night-time if you cannot sleep. Make sure there's someone you can ring (a friend, relative or the Samaritans), but also recognise that you do not have to lie in the dark and try to sleep. You can turn on the light and do something else.
Questions and worries about your future
Knowing that you have a life-limiting condition leaves you living with uncertainty. You will probably have questions with no definite answers, such as:
- how and when your body is going to change
- the effect this will have on your independence and your relationships
- what will happen at work
- exactly how much time you have left
Not knowing exactly what is going to happen to you can feel overwhelming and upsetting. It is normal to feel like this, and it might be helpful to talk with others who are in a similar situation, and hear how they cope with these feelings.
Ask your doctor or nurse about local support groups for people who are living with a life-limiting illness, or for people who have the same condition as you.
Many specialist charities offer support through local groups, email contact, phone lines and web forums. For example, Marie Curie has an online community.
healthtalk.org has videos and written interviews of people talking about their feelings when told they had a life-limiting illness and their emotions in the following weeks and months.
They also have videos of people reflecting on the positive aspects of knowing they are approaching the end of life and talking about how their religion, faith or faith helps them.
If you think you are depressed
It is normal to feel shock, sadness, anger and helplessness.
However, for some people, the feeling that they are not able to cope with their situation does not go away, and they feel too low to be able to do any of the things they want to.
If this happens to you and these feelings persist, it may be helpful to talk to your doctor.
Medicine can help, and counselling or cognitive behavioural therapy (CBT) can make a difference to how you are coping.
Living with dying
One step at a time
What you are dealing with can feel overwhelming, but you may be able to make it feel less so by thinking about it as smaller "pieces".
Take one day at a time, or one week at a time. Decide on some small, achievable goals, so that you gain confidence, for example putting family photos into an album, or visiting a friend.
You can still think about bigger issues, such as where you would like to receive your care in the future, but try not to feel that you have to tackle everything at once.
Write down your worries
Some people feel helpless and that everything is out of control. Writing down worries and questions can begin a process of deciding what is important to you and how to tackle it.
If you want, you can use what you have written to help you talk about things with your family, friends and carers.
Look after yourself
Try to take some time to do things you enjoy.
Complementary therapies, such as massage and aromatherapy, may help you feel better. It may help the people close to you if they know you are looking after yourself. There may be things that you can do together.
Accept offers of help from friends and family, and give specific examples of support you need and would like. For example, taking you shopping, bringing you some meals to put in the freezer, or driving you to appointments.
Find your local services
Page last reviewed: 20/06/2018
Next review due: 20/06/2021