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Planning your care in advance

If you have specific wishes about your future medical treatment and or care, it’s a good idea to discuss these with your carer, family and doctor or nurse. You could also write them down so people have a clear understanding of what you want.

If you’re having this discussion because you might not always have the ability to make your own decisions, this is called advance care planning.

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There are a few differences in how advance care plans and decisions can be made and applied in the four different nations in the UK. These are highlighted below.

What is advance care planning?

Advance care planning is about thinking ahead and talking to the people involved in your care, such as your family, doctors or nurses. It can be written down in a document that is sometimes referred to as an advance statement or, in Scotland, anticipatory care planning. It’s a process that allows you to express your preferences about the care you’d like to receive, including:

  • what you want to happen
  • what you don’t want to happen
  • who’ll speak on your behalf.

Advance care planning is an entirely voluntary process and you shouldn’t feel any pressure to include anything you’re not comfortable with. You can change your mind about anything you put in your advance care plan at any time. This is fairly common; up to one third of people make changes to their advance care plan.

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What does advance care planning involve?

Advance care planning includes anything to do with your future care. For example:

  • Where would you like to be looked after, such as at your home, in hospital, in a nursing home or hospice?
  • Where would you like to be at the end of your life and who you would like to be with you?
  • Are there any spiritual or religious beliefs you would like taken into account?
  • Who should be consulted if you become unable to make decisions? (This isn’t the same as appointing a Power of Attorney).
  • What are your views on particular treatments or types of care?
  • How you would like practical matters dealt with, such as the care of a pet?

Advance care planning can happen at any time – talk to your carer or someone close to you. You may also find it helpful to get some advice from healthcare professionals to help you understand your options. It doesn’t have to be in writing unless you’re making an Advance Decision to refuse treatment (see below). However, you may find that writing your wishes down makes it easier for people to understand and stick to them.

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Does advance care planning guarantee my choices will happen?

While every effort will be made to follow your advance care plan, it won’t always be possible to have your choices guaranteed. However, advance care planning ensures your wishes will always be taken into account. The only part of advance care planning that is legally binding is an Advance Decision to refuse treatment, and even then some conditions still apply.

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Refusing treatment

As part of your advance care planning, you’re entitled to state whether there are particular treatments you don’t want to have, called making an ‘Advance Decision to refuse treatment’. This means your wishes about that particular treatment should be followed.

An Advance Decision to refuse treatment will only be used if at some time in the future you lose the ability to make your own decisions about your treatment.

If you make an Advance Decision, you’ll need to state which treatments you wish to refuse and in what circumstances your refusal will apply. This is important as there may be circumstances in which you’d like a particular treatment but not in others. For example, you might be happy to accept antibiotics to treat an infection as part of your usual care. But you may decide against them if you were expected to die within a few days.

If you wish, you can refuse treatment that could potentially keep you alive (known as ‘life sustaining treatment’), such as a mechanical ventilator to help you breathe. If you want to refuse life sustaining treatment in future, you’ll need to make sure the decision is:

  • written down
  • signed by you
  • signed by an independent witness
  • specifies which circumstances you want it to apply in
  • includes the statement “even if life is at risk as a result”.

It should be noted that an Advance Decision cannot override measures to make you more comfortable like warmth, shelter and basic care (hygiene and offers of food and water by mouth).

If you think you may want to refuse certain types of treatments in future, you should discuss the options with a doctor or nurse who knows your medical history. If you would like more information on this, you can watch videos of people talking about their Advance Decision to refuse treatment   on healthtalk.org.

An Advance Decision is legally binding in England, Scotland and Wales but only when the circumstances are appropriate, for example if it’s assessed that a person has deteriorated and is in the last days of life. This isn’t officially the case in Northern Ireland, but is likely to be considered legally binding by a court (under common law).

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Resuscitation or Do Not Attempt CPR (DNACPR)

Although an Advance Decision not to attempt CPR can be part of advance care planning, it’s slightly different. This is because the doctor might have to make different decisions about resuscitation on your behalf if they feel it’s in your best interest and you lack the ability to discuss it.

Doctors might make a DNACPR decision if someone is approaching the end of their life and resuscitation would deny them a peaceful, natural death. Or they might want to avoid the trauma of rushing them to hospital if they know the person wanted to spend their last days at home. CPR is quite an invasive procedure and even if it’s successful it can cause organ injury and other side effects. For people living with a terminal illness, this is sometimes seen as unnecessary suffering when they’re already approaching the end of their life.

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Appointing a Power of Attorney

Within your advance care plan you can name a person or people who you would like to be consulted if you become unable to make decisions about your care. These people can help make sure that healthcare professionals act in your best interest and your wishes are respected. However, they cannot make decisions on your behalf.

If you want to nominate someone to make decisions for you, you will need to give them legal authority to do so by making them your ‘attorney’. Read more about setting up a Power of Attorney. If you’ve granted someone a Power of Attorney, remember to mention this in your advance care plan.

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Making your advance care plan

There are forms that you can complete in some surgeries or hospitals to set out your advanced care plan – check with your nurse or doctor. 

Once you’ve decided what to have in your plan, give a copy of any paperwork to the professionals involved in your care and your family members or friends – or tell them that you’ve recorded your wishes. This helps to ensure that people around you can act in your best interest.

If your health changes significantly you may find it useful to review your plan. It’s also a good idea to do this on a regular basis even if there are no changes, just to make sure it still reflects your wishes. Remember you can change your plan at any time.

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Electronic healthcare records in England

The NHS in England uses an electronic record system called the Summary Care Record. If you’re registered with a GP practice in England, you’ll automatically have a Summary Care Record unless you’ve chosen not to have one. 

What's included on a Summary Care Record?

A Summary Care Record contains important information about any medicines you’re taking, any allergies you suffer from and any bad reactions to medicines that you’ve had in the past. It includes your name, address, date of birth and your unique NHS number to help identify you correctly.

You can also choose to include additional information to your Summary Care Record. This might include:

  • details about any long term health conditions, such as asthma, diabetes, heart problems or rare medical conditions
  • relevant medical history, like treatments that you’ve had or care you’re getting
  • your preferences about how you’d like to be cared for, and any religious beliefs or legal decisions that you would like healthcare staff to know about
  • information about vaccinations you’ve had

 If you’d like to add any of this information to your Summary Care Record, speak to your GP.

How Summary Care Records are used

The information in your Summary Care Record can help reduce the need to repeat information to different health professionals and make sure those caring for you have the most up to date information about your care. It’s designed to sit alongside any advance care plan that you may have. Healthcare staff in England will have access to the information in your record if they need it. This may be particularly helpful if you need unplanned care or when your GP practice is closed.

Healthcare staff will ask for your permission every time they need to look at your Summary Care Record. If they cannot ask you, for example, if you’re not able to communicate, they may look at your record without asking you, because they consider that this is in your best interest.

Viewing your record and opting out

If you’d like to see the information in your record, speak to your GP, who will be able to show you. If you don’t want a Summary Care Record, you can choose to opt out at any time by letting your GP practice know. If you change your mind simply ask your GP practice to create a new Summary Care Record for you.

 

External websites

NHS   – Planning for your future care, a guide (PDF) 

Good life, good death, good grief   – planning future care in Scotland

National Council for Palliative Care   – Planning for your future care (PDF)

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NHS    – Advance Decisions to refuse treatment

PallCare NI   – resource for learning about terminal illness care


This content is provided for general information purposes only. It's not medical, financial, legal or personal advice. We suggest that you consult with a qualified professional about your individual circumstances. How our information is created and how it's used.

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