Planning care at the end of life
Whilst this can be a difficult conversation, planning can help you express your wishes, helping your family and professionals make decisions about your care if you are unable to.
The NHS should provide care in a way that achieves dignity and compassion for everyone equally. This means that every person is treated as an individual, whose needs and preferences should be considered – and an advance care plan can ensure this happens.
We’ve explained what an advance care plan is, how you can create one, and where to find other resources, based on guidance from the NHS, National Institute for Health and Care Excellence (NICE), as well as Marie Curie and Dying Matters.
Three key things to think about
- Coping financially
Ask your GP, hospital doctor or nurse to refer you to a hospital social worker or community social worker to help with your finances. As well as that, you can check if you are eligible for any benefits, or perhaps there are certain charities that can help.
Find out more - How you want to be cared for
Looking after your health and wellbeing is important when you're living with a terminal (life-limiting) condition. Take a look at the advice and information to help you cope with terminal illness and managing pain and stress.
Find out more - Where you want to be cared for
The palliative team will organise your care according to what you want. You can receive end of life care at home, in a care home, in a hospital, in a hospice.
Find out more
What is an advance care plan?
It is your choice whether you make an advance care plan. Its main purpose is to clarify people’s wishes and preferences, so that their end of life care is delivered to meet those needs. This is important for those with the ability to make decisions now, to consider a time when they may not be able to make such decisions in future.
Why plan ahead?
The NHS encourages patients to discuss their individual treatment preferences. An advance care plan ensures that these wishes are recorded and can be acted upon if necessary. For example, this could include talking about the risks and potential benefits of attempting CPR, as well as ‘Do not attempt to resuscitate’ (DNAR) orders.
Helping your loved ones
Planning ahead can also help make things easier for loved ones too. Having an advance care plan means they will be able to help doctors make difficult decisions because they already know what you would have wanted.
The main questions you should think about
The Mental Capacity Act provides a number of ways for people to plan their care and support in advance.
- Advance statements: What you want to happen.
These are not legally binding but should be considered carefully when future decisions are being made. They can include any information the person considers important to their health and care. - Lasting power of attorney: Who will speak for you.
This involves giving one or more people legal authority to make decisions about health and welfare, and property and finances. - Advance decisions: What you don’t want to happen.
These are for decisions to refuse specific medical treatments and are legally binding.
The following questions can help you to start to think about what is important to you
- If your health deteriorates, where would you like to receive care?
- Are there any spiritual or religious beliefs you would like considered?
- Who should your doctors or nurses talk to if you become unable to make decisions?
- How you would like practical matters dealt with, such as the care of a pet.
- Do you have any thoughts about what you would like to happen to your body after you die?
- Do you have any special requests, preferences, or other comments?
Your doctors or nurses can help you understand your options and what sort of care you might need. You shouldn’t feel any pressure to include anything you’re not comfortable with.
How do I make an advance care plan?
You can speak to your doctor or nurse about planning ahead at any time.
It may help to read the information on planning ahead by Hospice UK.
Before you make your plan, think about talking your wishes through with your healthcare professional, family and friends.
Ask your healthcare professional for an advance care planning form. Some NHS trusts or GP surgeries will have these available on their website.
Once you’ve decided what to have in your plan, give a copy of it to the people involved in your care and your family members or friends. This helps to make sure that people around you can follow your wishes.
How do I record and share my advance care plan?
If you write the plan yourself
You have the final say in who sees your plan. Keep it somewhere safe, and tell people where it is, in case they need to find it in the future. You can keep a copy in your medical notes. You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.
If you write the plan with a professional
If you make your plan with a health or social care professional, it can help if the discussion or any decisions made are recorded. Check that you agree with the notes that have been made, and make sure you receive a written record of your advance care plan, which you can take to show different services.
You should be asked if you consent for your plan to be shared with relevant people who provide your health and care. If you consent, your plan should be shared and when relevant, transferred – for example, if your care provider changes.
While you have capacity, your advance care plan should be reviewed whenever treatment or support you receive changes. All changes requested should be updated, including to any copies.
If you are nearing the end of your life, you may be asked if you would like to review your plan, or develop one if you haven’t already.
What is a living will?
When thinking about end of life care, some people may choose to have a living will. This is called an advance decision.
An advance decision (living will) is a decision you can make now to refuse a specific type of treatment at some time in the future. It lets your family, carers and health professionals know your wishes about refusing treatment if you're unable to make or communicate those decisions yourself.
For example, you can refuse a treatment that could potentially keep you alive, known as life-sustaining treatment.
It is a legally binding document that sets out what medical treatment you do not wish to receive in the future, such as:
- ventilation (breathing support if you cannot breathe by yourself)
- treatment of infections with antibiotics
- cardiopulmonary resuscitation (CPR)
You must name each treatment you do not wish to have, sign the document, and get it signed by a witness.
The charity Compassion in Dying has a template that you can fill in online or on paper.
Other things to think about
Organ donation
Organ donation in England has moved to an 'opt out' system. You may also hear it referred to as 'Max and Keira's Law'.
This means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.
Your family will still be approached and your faith, beliefs and culture will continue to be respected.
You still have a choice whether or not you wish to become a donor. Get the facts about organ donation to help you decide.
What do I have to do?
The NHS Organ Donor Register is asking everyone to:
- Record your organ donation decision on the NHS Organ Donor Register
- Tell your family and friends what you have decided
If you would like to speak to somebody about your choices, please call their dedicated line: 0300 303 2094
Coping financially
Ask your GP, hospital doctor or nurse to refer you to a hospital social worker or community social worker to help with your finances. As well as that, you can check if you are eligible for any benefits, or perhaps there are certain charities that can help.
Read NHS advice
Helpful links
The information in this article has been drawn from the following guides. These sites provide further information about the planning of care at the end of life, which may be helpful when planning your Advance Care Plan:
- NHS - End of life care
- Marie Curie – Planning your care in advance
- Compassion in dying – Making an advance care plan
- National Institute for Health and Care Excellence – Advance care planning
- Gold standards frame work – Advance care planning
