None of us like to think about the end of our lives or the end of our loved ones’ lives. One of the benefits of the 21st century is that in the UK, modern medicine can extend our lives in ways that would have been unimaginable to our ancestors.
Having worked with colleagues across social care and health on improving end of life care training, I remain constantly surprised at how hard people find it to plan for their future care needs.
The pandemic has highlighted the need for all of us to set out our needs and wishes clearly. Which makes the release of the principles for advanced care planning so important.
The Universal Principles for Advance Care Planning were jointly published by a coalition of partners, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021).
The principles start by emphasising that the person with social care and health care needs should be central to developing and agreeing their advance care plan. This includes deciding who needs to be involved in developing the plan.
Conversations about someone’s future care needs to be focused on what matters to them. For some people being at home might be fundamental, for others making sure that personal beliefs and culture are catered to takes precedent. When someone has mental capacity issues you might need to work out with them and others what to do based on what the person might have said in the past – or finding different ways of eliciting their views.
Whatever you do to make sure that the person is at the centre of their plan you need to be confident that the person agrees and understands what the outcomes of their plan mean. This can be hard to get right as different people and professionals may have different points of view. Making decisions together is key.
Once a plan has been agreed it needs to be shared and kept in a place where people who don’t know the person can find it. It also needs to be reviewed regularly as people’s views, perspectives, and life choices change. Anyone involved in advance care planning needs to feel able to speak up if they feel that the universal principles are not being followed.
For me, the universal principles for advanced care planning help give a framework for making sure that we know what people want, think and what we need to do to make sure peoples wishes are heard and listened to.
For social care colleagues the key things I think we need to do are find time to talk openly with each other about advanced care planning and keep testing our assumptions. Never being afraid to speak up on behalf of the people we support.
Also, it’s okay to talk about what this means for you personally. This will begin to help you feel able to talk to the people you support and their families.
Understand that even though it can be hard to start having a conversation on advanced care planning, once you get the conversation going it can be a relief for everyone.
In my own family my mother died suddenly, even though she had had cancer for many years, at no point had we done any advance care planning. We had no idea what her wishes were, or whether she had made a will. Whilst my brothers and I were able to reach agreement amicably – our agreements were based on second guessing and never being quite sure what we had to do, or what we could discuss with our mother in her last days. An advanced care plan would not have dampened our grief, but it would have made decision making much easier.