Planning for End of Life
It can be difficult to think about end of life, and you may not feel ready, but starting to prepare and talk about what you want can be helpful.
Making decisions and plans early can help you, and your family and friends, feel less overwhelmed and more able to concentrate on the things that matter most.
We’ve added some topics that you might want to start thinking about below. If you want to find out more, we’ve produced a booklet called Thinking ahead: preparing for end of life that talks about this subject in greater detail.
Collating memories and important documents
Keylu is an online platform that helps you to capture and securely store everything that is important in your life. You can upload personal, financial, and legal documents as well as mementos such as pictures and videos.
People with mesothelioma can take advantage of a free premium Keylu account, family members can receive a discounted membership.
You can learn more about Keylu membership by watching this video:
If you are a mesothelioma patient, you can request a free membership by ringing the support line team on 0800 169 2409. If you are a carer or family member of someone with mesothelioma, visit the Keylu website and enter the code MESKTJDXLPZ to join with your exclusive membership discount.
Talking about what care and support you might need as your condition progresses is difficult, however planning for a time when you may need more help to make daily tasks easier and maximise your quality of life is important. It can take time to get this support in place, especially if you need adaptations to your home.
It is reasonable to plan for the following, however that does not mean it will be necessary in all cases, everyone is different. Most people want to be cared for in their own home and this advice is given with that in mind.
If you live in a property with stairs, it is a good idea to think about what will happen if using them becomes too hard. There are long waiting lists to get a stairlift from local councils, even in high priority cases. A quicker option may be to rent or buy one and these can be installed in a matter of days. Second-hand stairlifts are also available at discounted prices.
If you have curved or split-level stairs, you will usually require a bespoke stairlift which will take longer to arrange. It can be difficult to rent stairlifts for curved or split-level stairs.
Washing & bathing
Washing and bathing can become increasingly challenging but there are many different aids and adaptations available to make things easier. From grab rails and bath lifts to a full wet-room renovation there are solutions available to suit different homes and budgets.
How to access help and support
Your local council provides equipment to support people in their own homes. Most equipment can be loaned for free and there are grants available for major adaptations. You will need to have an assessment of your needs by a professional such as an occupational therapist or a district nurse before any equipment or adaptations are approved. You can ask your nurse specialist, GP, or district nurse to refer you for an assessment or you can refer yourself by contacting your local council.
A will lets people know what you want to happen to your money, property, and possessions (known as your “estate”) after your death and is legally binding. You may have talked about your wishes with your family, but if you do not have a will, the law decides what happens to your estate.
Dying without a will is called “intestacy” and the law sets out how your estate should be allocated which may not be in accordance with your wishes. Even if you are OK with how the law would allocate your estate it will be easier for your family to manage your affairs if you have left a will.
It is especially important to have a will if you are not married nor in a civil partnership with your partner as there is no automatic right of inheritance for an unmarried partner.
Mesothelioma UK has a free will writing service contact us for further information.
Lasting Power of Attorney
A lasting power of attorney (LPA) is a legal document that lets you appoint one or more people (known as ‘attorneys’) to help you make decisions or make decisions or your behalf. This document gives you more control over what happens if you are unable to make your own decisions at some point in the future.
There are two types of LPA, one for health and welfare decisions and one for property and financial decisions. You can choose to have only one or both types of LPA.
You can make an LPA online at www.gov.uk or use paper forms. You do not need to use a solicitor to make an LPA if you prefer not to. An LPA must be registered with the Office of the Public Guardian, or your attorney will not be able to make decisions for you. It currently takes up to 20 weeks to register an LPA.
LPA’s end automatically when a person dies. From that point a person’s affairs will be looked after by their executors or personal representatives.
An advanced decision (sometimes known as an advanced decision to decline treatment, an ADRT or a living will) lets family, carers and the healthcare team know what treatment(s) a person does not want if they lose the capacity to make or communicate decisions in the future. The advance decision needs to be:
• written down
• signed by the person
• signed by a witness
The charity Compassion in Dying has an advance decision form you can fill in with suggestions for things to think about.
Getting the right support
Don’t feel like you have to do this all on your own, ask for support if you need it. For many, talking to friends and family is enough, but for some, talking to someone outside of their immediate circle is easier and feels safer.
There are lots of people you could talk to including nurses, counsellors or allied health professionals such as occupational therapists. You can also contact the Mesothelioma UK support line. 0800 169 2409.
Support groups can also be a big help. Sharing information and experience with others going through the same thing can make a real difference to how you feel. Find out about support groups here.