What is Advance Care Planning?
As you reach the end of your life, you may be too unwell to communicate your preferences about your care, or tell others what things are important to you.
Advance Care Planning is an opportunity for you, along with your family or friends, to think ahead of time about what your preferences are and write them down so that everyone can be informed. Planning for the future in this way means that the Health Care Professionals (HCPs) and others who care for you won’t have to guess about what you may or may not want.
Advance Care Planning is made up of four main aspects:
This is when you record your preferences about care and treatment. This is not a legally binding document and so we use the term ‘preferences’ rather than ‘choices’ as nothing can be guaranteed. Instead, your recorded preferences can be used by those taking care of you as a guide so they can do their best to achieve what you would like to happen.You can record your preferences about anything that is important to you. Nothing is too trivial, but below are some examples of the kinds of things you might have a preference about:
- Where you wish to be cared for in your last days of life
- Whether you have any religious needs
- Who you would prefer to be with you in your last days of life
If there are specific treatments you do not wish to have you can record these wishes. If you become very unwell, some treatments can sometimes be more burdensome than beneficial. For example, some treatments may extend a person’s life by a short period of time without making them feel better or improving their quality of life.
An Advance Decision to Refuse Treatment is legally binding and so needs signing and witnesses by another individual. The people looking after you are legally bound to follow this when caring for you.
You may find it helpful to talk to a doctor or nurse about the kinds of treatments you might be offered in the future, and what it might mean if you choose not to have them. Although a ADRT is completely your choice, you may want to discuss your thoughts with a doctor or nurse who knows about your medical history before you make up your mind.
Some of the treatments people refuse to receive are:
- Life prolonging treatment (treatments that may prolong your life short-term, but not improve the quality of your life) when you are already in your last days of life (antibiotics are an example of this).
- Artificial ventilation (treatments such as artificial ventilation, where a machine keeps you breathing after you would have naturally stopped) if you get to a point where you are too poorly to breathe for yourself
- Resuscitation (where health care professionals will attempt to restart your heart using forceful chest compressions after it has naturally stopped) if it is likely to be unsuccessful and not ‘cure’ you or make you any better in the long run
You can find out more about Advance Decisions to Refuse Treatment by clicking here.
You can download the NHS Advanced Decision to refuse Treatment Form by clicking here.
This is when you appoint individual(s) to speak on your behalf, at a time when you do not have the ability to make your own decisions. Although they cannot demand treatments, the appointed person can tell health care professionals which treatments they feel you would wish to refuse and share your preferences with them. They can make decisions about your health, but you also have an additional option about them making decisions about your property and finances if you wish.
You can find out more about Lasting Power of Attorney by clicking here.
How do I go about completing an Advance Care Plan?
You can complete an Advance Care Plan alone, but we encourage you to discuss it with family or friends. Specialist nurses, your GP, members of the Specialist Palliative Care team, district nurses and other involved in your care are all able to help and guide you to complete your Advance Care Plan. You may also find the Planning for your Future Care leaflet (available for download below) useful in helping you think about your preferences.
Once you have completed an Advance Care Plan, it is important that anyone involved in your care know that you have made one.
Remember… You do not have to do any of this if you don’t want to. Talking about some of these issues can be difficult and very upsetting, and some people find that they don not want to do this. This is absolutely fine.
Some of the things people have told us about Advance Care Planning
“At first, I was apprehensive about the idea, but it ended up helping me and the family talk about things that were going to happen… and helped us feel more prepared”
“It was like talking about the elephant in the room. It was such a relief to talk to my partner about all of this. The Macmillan nurse who talked me through it was so helpful, and answered all of our questions”
“I involved the kids in it. In the end I found it really important to do that, and it brought our family closer together. Yes it was tough… but I am so glad I did it”
“it made so much sense to me. I’d heard of terrible stories of people ending up in hospital, or dying in some corridor somewhere. I know where I want to be… at home in my own bed. I hope I’ve made this clear to everyone now”
You can download the documents we are using in Dudley below.
Advance Care Planning Lead
Dr Jane Reynolds (01384) 321800 or email DMSCaH@nhs.net