What is Advance Care Planning?
Advance care planning is a discussion between you and those who may provide care for you in the future, for example doctors, nurses or family members. This is an opportunity for you to bring up your views and preferences for future care.
Why is it important?
You might have strong views about the kind of care you would like to receive if the circumstances arise. For example, you may not want to be resuscitated after facing a long illness. This must be written down and recorded or your wishes may not be followed. A care plan is only a guideline, as we cannot predict the future, however it is always best to let your friends and family know your care preferences.
Planning in advance can be beneficial as there are a number of illnesses that can leave us unable to make decisions or talk, without warning. Degenerative diseases worsen over time so it is crucial to start a care plan after diagnosis, if one is not already in place. Discuss your wishes and preferences with a trusted person before naming them as your spokesperson for the future. This can also be done legally as a Power of Attorney for Health and Welfare (see our 'Write' page).
What can be included?
You can include any personal decisions related to your future care. Some examples are listed below:
• Any specific religious beliefs you want reflected in your care
• Your thoughts on different treatments and types of care
• Concerns or solutions to practical issues such as care of a pet
• Name of a person you wish to act on your behalf in the future
• Location of future care: home, hospital, hospice, nursing home
If there are certain treatments you do not want or only want in specific circumstances, all of these instances must be recorded. If you have not written them down or informed loved ones, your wishes may not be followed. If you want to refuse a life-sustaining treatment, such as being put on a ventilator, an ‘advance decision’ form must be made, signed and witnessed. Always seek advice from an experienced doctor or nurse before making your decision.
Questions to discuss with your family
Compassion in Dying have created a ‘How well do you know my wishes?’ quiz, which aims to spark conversation between loved ones and discover how well they understand each other’s end of life plans and preferences. We have included a basic guide to the questions below; you can find the full version at compassionindying.org.uk/library/well-know-wishes/ .
Write your answers to the questions on a separate sheet and compare with your family at the end to see if they managed to guess your wishes.
I have developed dementia and have reached the stage where I can no longer recognise the people close to me. I am then diagnosed with pneumonia, which would be fatal if it was not treated with antibiotics. In this situation, would I want antibiotics?
Yes / No / Maybe
I have heart failure, my health is poor and I find it difficult to walk very far. I am always tired and short of breath, but I am alert and able to enjoy time with friends and family. One day I have a heart attack and my heart stops beating. In this situation, would I want to be resuscitated?
Yes / No / Maybe
I am 91 and have dementia. My health has been failing for two years. I spend most of the day in bed and need 24 hour care. I forget friends and family when they come in to visit. I have begun to lose interest in eating and have lost a lot of weight. However, I am physically comfortable and usually in good spirits. The doctor wants to fit a feeding tube to make sure I get enough nutrition. Would I want the feeding tube fitted?
Yes / No / Maybe