Your wishes for your care

Planning ahead can help if you become unable to make a decision about your care yourself. It means your family and healthcare team can know and carry out your wishes as far as possible.

There are documents you can use to record your wishes. These include a:

  • Record of Advance Care Plans and Preferences
  • Statement of Wishes and Care Preferences
  • Preferred Priorities for Care document.

Before writing down your wishes, you may want to talk through your plans with your family or a close friend. You should also talk through your plans with a healthcare professional.

When recording your wishes, you may want to include:

  • where you would like to be cared for
  • what kind of care you would like
  • who you would like to be involved in your care.

Your health or social care team should keep a copy of your wishes. You should also keep a copy in a safe place and let people involved in your care know where it is.

It is important to regularly review and update your wishes.


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Thinking about how you would like to be cared for

As part of planning ahead, it is important to think about how and where you would like to be cared for. This is in case your health changes and you become unable to tell other people what you want to happen.

It is best to write down your wishes and preferences. This is so your family and health or social care professionals know how you would like to be cared for.

These statements about your preferences are not legally binding. But they will be helpful for health or social care professionals when they make decisions about your care.

There are a number of documents that can be used to record your wishes. These include a:

  • Record of Advance Care Plans and Preferences
  • Statement of Wishes and Care Preferences
  • Preferred Priorities for Care document.

You can ask your health care professional which documents are used in your area.

Before you write down your wishes and preferences, it may help to talk through your plans with your family or a close friend. This can be particularly helpful if you want them to:

  • be involved in your care
  • make decisions on your behalf.

You should also talk through your plans with one or two of the professionals looking after you, such as your GP or nurse.

It is also important to discuss whether your wishes are realistic. If they are not realistic, try to think of some alternatives. For example, you may prefer to die at home, but have no family members or close friends who can support you there. So it may be more realistic for you to be cared for in a care home, hospital or hospice.

It may not always be possible for your wishes and preferences to be met at the time when you become less well. For example, you may want to be cared for at home by a family member, but if they become ill or too tired, they may not be able to look after you. In this case, health or social care professionals may be able to arrange care for you so you can stay at home. However, if this is not possible, they will plan for you to receive the best possible care somewhere else. This may be in a care home or hospice.

One of the things my wife said to me was, “I know I’m dying but I want to die at home”. With the help of my daughters, the community nurses and the doctor, we achieved that.

Graeme


What to include in your wishes for your care

As much as possible, you should include anything that is important to you. If you are worried about a particular part of your care, you can make a plan for what you would like and write this down. You could include the following:

  • Where you would like to be cared for when you can no longer look after yourself. For example, this could be at home, or in a hospital, care home or hospice.
  • Where you would like to be cared for when you are dying. For example, at home, or in a hospital, care home or hospice.
  • What kind of care and treatments you would like (you cannot demand particular treatments).
  • Information about specific spiritual or religious practices that you would like to be carried out or reflected in your care.
  • Who you would like to be involved in your care. For example, family or close friends.
  • The person or people you would like to be asked to make decisions about your care if you are unable to make them yourself. You may want to create a Lasting Power of Attorney so that others can act on your behalf.
  • Who you would like to look after any pets.
  • Whether you would like someone to tell you how serious your condition is and what might happen in the future.


Writing down your wishes for your care

You can ask your health or social care professionals if they have a document so that you can record your wishes and preferences. Or you can use the Preferred Priorities for Care document.

Once you have completed the document, you should share it with anyone who is, or is likely to be, involved in your care. This may include:

  • a family member
  • a close friend
  • your GP or hospital doctor.

Your health or social care team should keep a copy for their records. You should also keep a copy in a safe place and let people involved in your care know where it is.

It is important to regularly review your wishes and keep them up to date. You can change your mind at any time. But remember you will need to make sure you record your changes. You will also need to let your family, community nurse, GP, or hospital doctor know, and give them an updated copy of the document.

If you are admitted or transferred to a hospital or hospice, take your document with you. This will let the staff know what your wishes and preferences are for your care.

Below is an example of some of the information included on a Preferred Priorities for Care document.

Your preferences and priorities
In relation to your health, what has been happening to you?
My doctors have told me that I am now only receiving care to control my symptoms. Curing my illness is no longer possible.
What are your preferences and priorities for your future care?
If I were to become less well, I’d like my wife to be involved in making decisions about my care and I’d like to be kept fully informed about what’s happening to me.
Where would you like to be cared for in the future?
I don’t mind where I am cared for as long as my family are close by.
Date23.2.15

An example of writing down your wishes for your care

Below, Adrienne talks about how her father-in-law Dennis wrote down his wishes for his care.

‘In February, my father-in-law Dennis was diagnosed with small cell lung cancer. Unfortunately, the treatment didn’t work and in August the doctors told him that he wouldn’t benefit from any further active treatment. Although disappointed, Dennis was relieved to stop as it was exhausting him.

During the course of the next few months, Dennis was referred to the Community Macmillan Nurse who helped him and my mother-in-law, Joyce, talk to each other about the fact that he was dying.

As an ex-district nurse myself, I was keen for the district nurses to discuss with Dennis and Joyce his preferred priorities for care and write them down. The district nurses were reluctant but when I spoke again to them they said Dennis had expressed a wish to die in a hospice. I knew this was not the case as he was petrified of hospices and had previously refused to attend the day hospice centre. I asked the district nurses to go back and speak to Dennis about his wishes, and help him document them using the Preferred Priorities for Care document. One of the district nurses phoned me back to say Dennis had stated, and written down, that he wanted to die at home (and not in a hospice as the district nurses had suggested) as long as Joyce could cope. As a family we knew this was what he wanted and we all agreed to help Joyce cope.

Over the next few weeks Dennis grew weaker. GPs suggested transferring him to the hospital or hospice, but each time we were able to show them his written Preferred Priorities for Care document and insist he stayed at home.

We had nurses overnight some nights and the family took it in turns the other nights. In October, Dennis died at home, in his own bed, with his dog Murphy lying beside him and his granddaughter Lauren holding his hand. It was a great comfort to Joyce and the rest of the family to know that Dennis’s wish to die at home had been fulfilled.’

Back to Advance care planning in England and Wales

Planning ahead

Planning ahead can help people know what care you would like if you become unable to make choices yourself.

Making a will

Having an up-to-date will ensures that your wishes for who you would like to leave your estate to are guaranteed.

Funeral planning

Planning your funeral in advance means your family and friends can arrange the type of funeral you would like.