Let's talk: advance care planning
It’s good to plan ahead and think about what is important to you if you become very unwell. This can help the people caring for you to know your wishes and needs.
Advance care planning is when you think about and share how you want to be cared for in the future or at the end of your life. Anyone can do this, at any time. However, it's often done when people face a serious illness.
What to expect from advance care planning
As part of advance care planning, it's important that you:
- understand what to expect in the days, weeks or months ahead
- are aware of your choices about your care or treatment
- are involved in planning your care
- are supported to record your wishes or needs
- know who you can talk to
- have your physical and emotional needs met
- have your cultural, religious and spiritual needs met and considered at all times
- feel confident that your wishes and needs are shared with everyone involved in your care
- are cared for in a way that's right for you
Let's talk: how we support open conversations
Our 'Let's talk' campaign aims to support conversations between you and your healthcare professionals about the things that matter.
We encourage, train and support our staff to have honest conversations that help you live as well as possible. This might mean talking frankly about things like when to stop some treatments or other options to hospital care.
Thinking and talking about your options can be scary, but it can also help you to feel prepared. It can be a comfort to know that your loved ones and healthcare professionals understand your wishes and what's important to you. We're here to have these conversations with you when you're ready.
How making a plan can help
Talking about and recording your wishes can help to make sure that:
- you have the right care and support
- you are cared for in a place that is right for you (this might be at home or in a hospice, care home or hospital)
- your physical, emotional, practical and spiritual needs are met
- your loved ones feel reassured because they know your wishes
As part of the planning process, it's a good idea to have a conversation with the people involved in your care. This can help you to understand your choices and what they might mean.
Recording what's important
The conversation gives you the chance to think about and record:
- treatment options, including any that you do not want
- where you want to be cared for (at home or in a hospice, care home or hospital)
- what's important to you
The things that are important to you could include:
- your values and identity
- any worries or fears that you might have
- your religious or spiritual beliefs
- how you like to spend your time
In the following video, Peter and his son Alastair share their experience of talking about dying and planning ahead.
Peter – From the moment you're born, there's only one end I'm afraid - you don't go on forever. I'd like to: I enjoy life. Planning for one's death is just part of life, anyway. We're going to go in the end, sometime.
Winifred Yeboah, renal supportive nurse – Most people tell us that they wish to die at home, surrounded by family and friends. However, the choices they make means that this does not always happen.
Peter - My dear wife, she died April 2017. One moment she was there, the next moment she'd gone. Pat and I, we used to sit opposite and we would discuss death, I can't say endlessly, but quite a lot. So we discussed what we would want to do, depending on the situation that came to us.
Alastair (Peter's Son) – When my mum died, it was very sudden and completely unexpected. The fact that we knew what Mum wanted in some ways made it a lot easier.
Peter – When the children raised the idea of a Lasting Power of Attorney, I thought, "well, it's the best thing to do whilst I'm still sane" and so I had no compunctions whatsoever. I told solicitors,"I want a new will and I want Lasting Power of Attorney both for health and welfare and also for financial affairs" so that whilst I'm still able to make that decision, to go ahead and do it. I'd want life-sustaining treatment if it was eminently treatable and I would be OK afterwards. I was told I've got prostate cancer, but just a small shadow and probably controllable. Every 12 weeks it takes a few moments for the injection and that keeps the prostate cancer problem at bay, so far. With resuscitation, I think it depends on the degree of capability. One reads of cases where they're just going on and on and on. If it's a hopeless case, I wouldn't want to live. No point.
Winifred – People tell us the sort of treatments they would like and would not like. For example, some people would not like putting tubes down their throat. Another thing that people often think about is resuscitation or cardiopulmonary resuscitation (CPR). CPR can save lives, but for those living with poor health it isn't always the right thing to do. Apart from the medical choices, it is helpful to consider the little things that are important to you, like where you would like to be cared for: at home, hospice or hospital; things that make you smile - could be food, smells, photos - or family that gather around you.
Peter – I'm an optimist, so I always think that the best of things will happen, you see. Keep cheerful. I know I've done the right thing for my family. They are not going to be worried any more.
Telling loved ones about your plans
You might have thought about where you would like to die and other plans for the end of your life. However, you might need support to share your plans with family and loved ones.
When Mimi was diagnosed with terminal cancer, she planned ahead. Mimi wanted to make sure that her husband, Ike, and their 2 children could cope after she died. Ike was not ready to hear about the plans at first. Later, he realised that her preparations were a big help to the family.
The following video by Hospice UK shares Ike's story.
How to record your wishes
You can use different documents to record your wishes. Some documents are legally binding. Others are not binding, but help us to understand how you want to be cared for and what's important to you.
We use a document to record your needs and wishes about your future health and care. When this document is complete, it's called an advance statement.
An advance statement is not legally binding. We use the document to guide us about your wishes when making decisions in your best interest. This is important if you cannot make the decisions yourself. An advance statement recording your needs and wishes helps us to make decisions that are right for you.
The advance statement should be attached to your medical notes. This means that the people involved in your care can find the document easily.
Advance care planning can also include making other documents to record your wishes. Examples are:
- an advance decision to refuse treatment (a legally binding decision that you can make now to refuse a specific type of medical treatment in the future)
- a lasting power of attorney for health and welfare (when you give someone the legal power to make decisions about your health and welfare if you can no longer do this yourself)
Useful information and support
For more information about making a health and welfare lasting power of attorney (LPA), please visit: www.gov.uk/power-of-attorney
For information about creating an advance decision to refuse treatment or an advance statement, please visit: www.mydecisions.org.uk