Thinking about end of life information guide
Thinking about life ending can be difficult – many of us tend to not think about it until we have to. But it’s a good...
Planning for the end of your life can be difficult – lots of us tend to put it off until we have to. But giving things some thought now means you can consider all your options and be confident that your wishes are known as you get your affairs in order.
The first thing to think about when you're getting your affairs in order is making a will. Having an up-to-date and valid will is important, as it means that there are clear instructions about what you want to happen to your money, property and possessions (known as your 'estate') and your online accounts after your die.
If you've already made a will, it's sensible to review it every 5 years – or sooner if there's a significant life event, like the birth of a grandchild – to check that it still reflects your wishes.
Whether you're living with a long-term health condition or just want to plan for your future health and care needs, having arrangements in place can reassure you and your loved ones. We cover some of the ways you can plan for your future care in this section.
You can make an advance decision to refuse medical treatment in specific circumstances in case there comes a time when you lose the capacity to make or communicate your own decisions. Advance decisions are legally binding – those involved in your care must follow your instructions.
You can make an 'advance statement of wishes', which tells those involved in your care how you'd like to be cared for – from your dietary requirements to who you'd like to be consulted about your care. Advance statements aren't legally binding, but they should be taken into account by those involved in providing your care.
Creating a lasting power of attorney (LPA) for health and care decisions gives someone you trust the legal authority to make decisions relating to your health and care on your behalf if there comes a time when you're no longer able to make or communicate decisions yourself.
If you're living with a long-term health condition, conversations – between you, your loved ones and your medical team – about your condition and how you'd like to be cared for as it progresses are really important.
In some areas, there are local registers that hold key information about the preferences of people nearing the end of life. Your GP or medical team should tell you if there's a local register in your area and ask you if you want to be put on it. The register can be accessed by authorised staff, including your GP, out-of-hours GP service staff and paramedics and specialist palliative care team staff. It aims to ensure everyone involved in your care is aware of your preferences and wishes.
If you're diagnosed with a life-limiting illness, your doctor should explain your condition and treatment options in a way that you understand. If your GP or medical team use phrases you’re not familiar with, make sure you ask them to clarify what they mean.
Your doctor should answer any questions you have about your condition or life expectancy. But you can decide how much or how little information you want – and remember that it's OK if you don't want all the information at once.
It might be useful to discuss the following topics:
All this can be hard to take in so ask the staff to repeat any information at any point. You may find it useful to take notes or to record the conversation (if your doctor agrees to this). Or you could invite a close family member or friend to attend appointments with you to help you remember the information and offer emotional support.
Depending on your condition, there may be a helpline staffed by specialist nurses and advisors who can offer you practical advice and emotional support. For example:
You may hear your medical team using terms you're not familiar with. These terms can be confusing – but the following definitions should help.
This refers to what's likely to be the last 12 months of a person's life.
This focuses on the quality of the person's life and death, rather than the length of their life. It also includes support for family and carers
This involves looking at issues across areas of your life that are particularly significant as you reach the end of life. It includes legal and financial issues, planning your funeral and exploring the options about your care (including where you'd like to die).
This refers to an illness that cannot be cured – but some people with terminal illnesses live for quite some time. Terminal illnesses may also be referred to as 'life-limiting'.
It can be helpful to think about where you'd like to be cared for if you become unwell. Your choice may not be feasible, but knowing your wishes means doctors and loved ones can do their best to follow them as closely as they can.
Wherever you're cared for, the most important thing is that you receive the support you need to spend your final days in the most peaceful and dignified way.
You might prefer to be cared for at home towards the end of your life. Some people feel most comfortable in their home and find it makes it easier to say goodbye.
If you'd like to be cared for at home, talk it over with your doctor and the people you live with to see how they feel about it and whether it's feasible. You should also find out what support could be available to help you and your carers – both during the day and at night. If you live alone, speak to your healthcare team to see what support would be available to help you around the clock.
Hospices and palliative care teams are often involved in supporting people who wish to remain at home through a mix of specialist services such as hands-on care, advice on controlling pain and symptoms, emergency advice lines and information. Hospices and palliative teams also work closely with doctors and community nurses to coordinate your care.
If you're in the process of choosing the right care home for you, talk to the manager about their experience of supporting residents at the end of their lives.
If you already live in a care home, you might want to ask them whether they can offer you the care and support your doctors say you'll need in the last few weeks and days of your life. If you already live in a residential care home, you may need to move to a nursing home where nursing staff are on duty 24 hours a day.
Hospices specialise in supporting people with terminal illnesses, and those close to them, often from the point of diagnosis. You might hear this type of support referred to as 'palliative care'.
Hospice care is free for everyone and can be offered in a range of settings, including hospices, care homes, people’s own homes and through day services run at a hospice. Hospice beds are rarely a long-term option for care and most hospice care is provided through day care or in your own home.
Hospice care aims to help you live as fully as possible until the end of your life, and the support is tailored to your needs – your emotional, spiritual and social needs, as well as your physical needs.
Hospice services include:
Speak to your GP and medical team to find out more about local hospice services in your area and how you can be referred for support.
Even if you know what practical steps to take to plan for the future, having conversations about these steps can feel daunting. But it can help to talk to your loved ones so that they know what your wishes and preferences are as you reach the end of your life.
There are some things you can do to try to make these conversations a little bit easier:
Family and friends can be reluctant to have these conversations – perhaps they simply don't want to think about you dying, or they might be worried about saying the wrong things. It might reassure them if you say that it'd help you to talk, and that it might make things easier for them later down the line.
Remember that there's no right or wrong way to start these conversations. Share as much information as you feel able to – and if you don't feel ready to talk yet, that's OK too.
As part of their Dying Matters campaign, Hospice UK have free resources, such as leaflets and posters, to help you start conversations about dying, death and bereavement
When planning ahead and getting your affairs in order, it's a good idea to think through certain practical things.
It can be helpful to keep key documents together in a safe place and tell your carers, a family member or the executor of your will where they are. This can make things easier for them later down the line.
Key documents include your:
If you have any online bank accounts, your executors can arrange for it to be closed down and claim the money on behalf of your estate. Don't leave details of your passwords or PIN numbers as if someone tries to access your accounts with these they could be committing a criminal offence.
If you use the internet to pay bills, shop or keep in touch with friends, it's sensible to think about what will happen to your digital legacy after you die. The Law Society recommends creating a 'personal assets log' (an up-to-date list of all your online accounts) along with clear instructions about what you want to happen to each account after you die. For example, you may want some social media accounts to be deactivated, or you might want close friends or family to be able to recover sentimental items you have stored online, such as photos.
If you have pets, you’ll want to think about what will happen to them when you’re no longer able to care for them. You might already know someone who’s happy to help – but they may not be able to keep them permanently
The Cinnamon Trust is a charity for older people and their pets. They have volunteers who can help you keep your pets at home for as long as possible, for example by walking your dog, or fostering your pet if you have a short stay in hospital. They also have a Pet Friendly Care Home Register where you can search for care homes that are happy to accept your pets. You can also arrange for the Cinnamon Trust to take on lifetime care of your pet when you die.
Dogs Trust has a free Canine Card Scheme. If you register, when you die, Dogs Trust staff will arrange for your dog to be taken to its nearest rehoming centre, where they’ll be looked after until a suitable new owner can be found.
And if you have cats, Cats Protection has a free Cats Guardian service. If you register, they'll look after your cat until they can find a suitable new owner.
Thinking about your funeral can feel difficult – but giving it some thought can make things easier for everyone. Talking about what you would and wouldn’t like, finding out how much things might cost, and putting some plans in place can reassure you as well as your family and friends.
Some of the things you might like to consider and plan include:
You might want a humanist or family-led funeral, or you might have a special request – such as a woodland burial or a coffin made from materials like wicker or cardboard. Whatever you want, it’s important to let your loved ones know
To find a funeral director, contact the National Association of Funeral Directors or Society of Allied and Independent Funeral Directors. They can also provide you with information about funeral pre-payment plans. Make sure you know which services are included in the price as this can vary.
Once you've made all your practical plans, it's likely that you'll have many mixed emotions and your focus may shift to saying goodbye to your loved ones.
Perhaps there are things you'd like to share with people before you die, or maybe you want to create something to leave behind. Some people find it helpful to write down their family history for the next generation or put together a memory box or scrapbook of their life.
If you have children or young adults in the family, you might want to talk to them about what’s going on if you become unwell. This can be difficult – but it can help them make sense of what’s going to happen and allow you to answer their questions and address their fears and worries. Don’t be afraid of getting upset – showing your emotions lets them know that it’s OK to feel emotional too.
Hospice UK have a leaflet called Talking with children about dying that may also help:
And Winston's Wish offers information and support for children and young adults affected by death.
The most important thing throughout the whole process is to do what feels rights for you, when it feels right.
Cruse Bereavement can offer practical information and emotional support to your loved ones after you die.
We offer support through our free advice line on 0800 678 1602. Lines are open 8am-7pm, 365 days a year. We also have specialist advisers at over 120 local Age UKs.
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