What is advance care planning?
Many of us want to have a say about where we die, and the type of treatment and care we receive at the end of life. But fewer of us seem to take the step of recording our wishes.
Advance care planning is the process of deciding how you would like to be cared for at the end of your life, and communicating those plans to others around you. By letting everyone know your preferences in advance, it’s more likely that your wishes will be met, even if a time comes when you can no longer speak for yourself.
These plans can cover any aspect of your end of life care, and some typical areas include:
- where and how you’d like to be cared for
- your medical preferences, including any specific treatments you don't want to receive
- who should speak on your behalf
- where you’d prefer to die
- any preferences you may have for your funeral.
Alternatively, you may only wish to set down your wishes about one or two important matters.
Why plan ahead?
Planning ahead helps you stay in control of your future care and treatment. It gives you time to find out about your rights and options, and to work out what matters to you. That means you can make more informed decisions and get the type of care and support you’d like when the time comes.
Planning ahead can also help communication between your healthcare team and family. It can also help prevent disputes if family members disagree about what should happen.
People often start planning when faced with a life-limiting or terminal condition. But there may be other reasons too. For example, you may:
- be dealing with ongoing health difficulties
- have strong feelings about how you wish to be cared for towards the end of your life
- be worried about the impact that caring for you will have on your loved ones
- want to protect your family from making difficult decisions on your behalf
- be concerned about getting appropriate pain relief or other treatment
- want those caring for you to understand something about who you are and what matters to you
- have no relatives or friends nearby to speak on your behalf.
How to record your wishes
The best way to ensure that people know about your wishes is to put them in writing. It makes it easier to share the information with everyone involved in your care. Make sure you give people copies or let them know where you have put any documents so they can find them easily in case of an emergency.
Preferences about how you would like to be cared for can be recorded in an advance statement. This is a general statement about your care wishes. It can include any information that's important to you, such as where you would like to be cared for, who should be consulted about your care, or other personal preferences, such as dietary needs or whether you prefer a bath or shower.
This is not a legally binding document, but those involved in your care have a responsibility to take account of your preferences where possible.
If you want to receive or refuse specific medical treatments you can record your wishes in an advance decision, sometimes referred to as a living will. This is also an opportunity to indicate whether or not you wish to be resuscitated if you stop breathing or your heart stops.
Any preferences you may have for your funeral can also be noted down, either as part of an advance statement or in a separate funeral plan. This will make it easier for your loved ones to plan the funeral you would have wanted.
Making a will
If you haven’t done so already, this is also the time to make a will, or check that your existing will is up to date. Making a will lets you decide what happens to your money, property and possessions after you die. You can also use a will to determine who should look after anyone who is dependent on you and who should care for any pets you have. Which? Money has more advice on what you should include in your will.
If you don’t make a will it can take longer to sort out your affairs and it may mean that your possessions and money are not passed on to the people you would like to receive them.
Power of Attorney
A Lasting Power of Attorney (LPA) lets you give someone you trust the legal authority to make decisions on your behalf, in case a time comes when you can longer make decisions or communicate them for yourself.
An LPA can cover decisions about your finances and your property, or decisions about your medical treatment, care and living arrangements. Read more about the different types of Power of Attorney and how to set one up.
If you don’t have an LPA in place and you are no longer able to make decisions, your relatives will have to apply to the Court of Protection to establish who can make decisions on your behalf. This can be a long and expensive process.
In England and Wales, organ donation is now ‘opt-out’ by default. That means that all adults (with a few exceptions) are considered organ donors when they die unless they have recorded a decision not to donate.
If you don’t want to donate your organs then you should register your decision to refuse to donate with the NHS Organ Donor Register.
Remember to speak to your family and loved ones about your decision. Your family will always be involved before donating takes place.
Organ donation in Scotland is currently an ‘opt-in’ process, but the law will change to an opt-out system in March 2021.
How planning ahead makes a difference
Although it can be upsetting to talk about the final stages of life, and hard to know where to start, many people find it worthwhile in the end.
Planning ahead can help you feel more in control and give a sense of relief, knowing your affairs have been sorted out. It gives you the chance to understand what treatment and care options are available and understand your rights, for example around refusing certain treatments. And you can be more confident that your wishes will be followed and you’ll be cared for where and how you would prefer.
Your family, friends or carers can also benefit. It can help them feel less anxious about the future and give them confidence about any decisions they make on your behalf. It can also help them to sort out your legal or financial affairs and organise the type of funeral you would’ve liked.
People who have shared their decisions about end of life care are more likely to:
- access palliative care early, which helps to achieve a better quality of life in the time that remains
- receive treatment and care in line with their wishes
- die in the place of their choosing.
How do I start planning ahead?
Making end of life choices can be hard. It means contemplating your own or a loved one’s death, while also making difficult legal and medical decisions.
Talking to family members or a close friend can help you think about what you really want and how to make that possible. This can be particularly helpful if you want them to be involved in your care or make decisions on your behalf. They may be able to help you think through some of the issues so you can plan ahead better. It will also help them to understand what your wishes are and make sure they are carried out.
You could also talk to some of the professionals likely to be involved in caring for you, such as your GP. They can help you think about your care options and decisions about future treatment. Your GP may also put you in touch with the local authority to find out about your options for getting care at home or moving into a care home.
Other professionals you might want to talk to include a solicitor, if you’re thinking about setting up Power of Attorney, or an independent financial adviser, if you need help with major financial decisions. Which? Money has guidance on how to find suitable financial advice.
Don’t forget that you don’t have to do everything at once. You can take things one step at a time. And if you change your mind at a later date, you can simply revise your plans.
If you find it difficult to start the conversation, take a look at our article on talking about dying.
An advance statement records your preferences for future care, in case you lose the ability to speak for yourself.
An advance decision records your preferences about medical treatment, in case you lose the capacity to make decisions ...
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