Thinking and planning ahead
There may come a time when you want to think about the last years, months, weeks or days of life. It could be your own life or the life of someone you know and love.
Thinking and talking about the end of life can be difficult. Take your time reading this information.
Talk to your family, friends, health and social care professionals. Think about and discuss what is most important to you and decide who you want to talk things through with.
Thinking and planning ahead is also called advance care planning. This is voluntary and involves you thinking about and discussing what matters to you about your care in the future and writing down your decisions. It’s a good idea to review your plans regularly.
How people plan for their end of life is an experience personal to them. From research and people’s personal stories, we know that when facing the end of your life, it is often important and reassuring to discuss with your carer and family what is important to you, and the choices you’d like to make about your future treatment and care.
What can you do?
It’s important to think about, discuss, decide and write down your decisions in advance. This is so people know your thoughts and decisions in advance about what you do or don’t want. It might be that sometime in the future, you can’t tell them yourself.
Tip: Talking about these things can sometimes be emotional or tiring, so don’t feel that you have to do it all at once. Advance care planning is an ongoing activity that sometimes takes time.
Talk to your family and friends, nurse, doctor, hospice, hospital and health and social care teams. Give yourself time to have these conversations with those close to you. The things that are important to you are more likely to happen if you share your ideas and thoughts.
It can be difficult to know where to start, so we have given you some ideas you may want to consider.
Questions that you might want to discuss with your family, carers and health care professionals could include:
- What matters to me most now?
- What can be done to help me if I get more out of breath?
- Do I want to be admitted to hospital if I get really ill?
- Would I agree to resuscitation if my heart or lungs stopped working?
- Where would I like to be cared for towards the end of my life?
- Is there anything else I need to do about my will and financial affairs?
You can write down and record your choices in your advance care plan. Read more about creating an advance care plan.
Palliative and hospice care
You may have heard of palliative and hospice care and think it is only for people who have cancer, but this is not the case. It is available for anyone with a life-shortening illness, including those with a non-cancer lung condition.
It is care designed to improve the quality of the person’s life and the lives of those who are close to them. This includes controlling symptoms, which can be interrelated, such as fatigue, anxiety and breathlessness.
Palliative care also aims to support you, your family and carers emotionally and spiritually before and after death or bereavement and with practical issues. Talk to your doctor and nurse about your local services.
Practical things to think about
Practical issues might be the last thing you want to think about at the end of a life. However, many people find it easier to cope with sorting things out at this time, knowing that their family and friends do not have the responsibility of making major decisions for them. Things you may want to think about in advance are:
Making a will
By making a will, you decide what happens to your property and possessions. You can draw up a will yourself, but it is best to get legal help because there are certain rules to follow when writing the document. You can contact your local Citizens Advice Bureau for a list of solicitors who can help by either writing the will for you or checking one that you have written.
Before making your will, it’s important to think about:
- what money, possessions and property you have, called your estate
- who you want to give your estate to
- who you want to take care of any children who are under 18
- any wishes you may have regarding your burial or cremation
- who you want to carry out your wishes and sort out your estate. This person is known as the executor of your will
Putting your affairs in order
It can be helpful to let your family and executor know where they can find:
- your financial records such as your bank, building society, credit card and pension details
- important documents such as your passport, insurance details and house deeds
- details of your gas, water, electricity suppliers and phone contracts as well as any hire or credit agreements
- funeral plans, including any pre-paid plans
“Over the past few days I have been doing a great deal of thinking, such as making sure that I am listed as DNR [do not resuscitate] , you even have an opportunity to put, in writing, your preferences for care and where it should be for each stage.
For example my own is going to be that while I am mobile and not bed ridden I will stay at home. However the minute I am confined to my bed and unable to do much for myself, I have requested the final stages should be in hospital or hospice.
It also gives me time to sort out all the internet stuff, my wife is not computer literate so my son is going to have to take it all over.....banking, repeat meds and so on........keeps you busy just thinking!”
- Alan, who has COPD