Your wishes for your care if you live in Scotland
As part of planning ahead, it’s important to think about how and where you would like to be cared for if your health were to change and you were unable to tell others what you want to happen.
It’s best to write down your wishes and preferences so your family and health or social care professionals know how you’d like to be cared for. Although your written wishes and preferences aren’t legally binding, they will be very helpful for health and social care professionals when they make decisions about your care.
You may sometimes hear the term Advance Statement used to describe your written wishes and preferences for your care.
Before you write down your wishes and preferences, it can 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 or 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’s also important to discuss whether your choices and wishes are realistic. If they aren’t, try to think of some alternatives. For example, if you would prefer to die at home but have no family members or close friends who would be able to support you at home, 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 over-tired they may be unable to care for you. In this situation, health and social care professionals may be able to arrange care for you so you can stay at home. However, if this isn’t possible they will plan for you to receive the best possible care somewhere else. This might be in a care home, hospital or hospice. We have more information about choosing where you would like to be looked after at the end of life.
What to include in your wishes for your careBack to top
As far as possible, you should include anything that’s important to you. If you’re worried about a particular aspect of your care, you can make a plan for what you would like and write this down. For example, you could include the following:
- Where you would like to be cared for if you can no longer look after yourself. This might be at home or in a hospital, care home or hospice.
- What kind of care (for example treatments) you would like. However, you can’t demand particular treatments. Where you would like to be cared for when you are dying. This might be at home or in a hospital, care home or hospice.
- Information about specific spiritual or religious practices that you’d like to be carried out or reflected in your care.
- Which people you would like to be involved in your care. This may include family or close friends.
- Who you would like to act on your behalf if decisions need to be made about your care and you are unable to make them yourself. For example, you may want to create a Power of Attorney.
- Who you would like to look after any pets.
- Whether you would like someone to tell you how serious your condition is and the likely outcome of your condition (for example what might happen to you).
Writing down your wishes for your careBack to top
You can ask your health or social care professional if they have a document where you can write down your wishes and preferences. They may have a specific document that’s used in the area where you live. These may include My Personal Plan and My Thinking Ahead and Making Plans. If you have an Anticipatory Care Plan, your health and social care professionals may write down your wishes and preferences for your care on this document. You can also download the What’s Important To Me document [PDF, 56.2kb].
Here are some examples of the information you might be asked to include:
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.
You will also be asked to sign and date the 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, close friend, nurse, GP or hospital doctor. Your health or social care team should keep a copy for their records. Make sure you also keep a copy in a safe place and let your family and others involved in your care know where it is.
Regularly review your choices and keep them up-to-date. You can change your mind about your wishes at any time, but remember to make sure you record your changes. You will need to let your family, community nurse, GP and/or hospital doctor know and give them an updated copy of the document.
If you’re admitted or transferred to a hospital or hospice, take your document with you so that the staff will know what your wishes and preferences are for your care.
An example of Preferred Priorities for Care in action - Adrienne's story
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 that 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 What's important for me 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 What's important to me 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.