One fundamental advancement in end of life care has been troubling me for some time – Advance Care Planning (ACP). I have been concerned about the way it’s conceived and practised, with the pandemic only increasing this. What should’ve been a series of thoughtful and compassionate conversations about the focus, place and nature of care as someone’s condition advances, has for many become a transactional tool for people to make stark choices.
As society is shifting and people want greater self-determination and control over their life and death, this needs to be different. We need to act now to give both professionals and members of the public the tools to ensure ACP regains its status as an effective means of establishing what matters to people, then plan and deliver care on that basis, albeit with a healthy dose of realism included.
Working with colleagues involved in Community Action, we organised ‘Future Planning: Advance Care Planning Reconsidered’, a one-day conference, to start a serious conversation about what ACP really is, why too often it’s not working and how we can make it work better.
Sector representatives offered their take on ACP’s value, academics provided evidence of effectiveness and people with lived experience shared the impact of ineffective ACP. Many people reflecting on their own experience offered new ideas about how health and social care professionals talk to citizens about their plans, and how they negotiate the highly sensitive issues around serious illness, death and legacy.
ACP was designed to be a two-way conversation in which professionals would listen to the person’s wishes and preferences, then negotiate openly and honestly about what was likely to be possible, the opportunities and the risks and how these were best addressed. It was meant to generate a plan that is realistic, in which professionals are transparent about what is possible in stretched health and social care systems, often risk adverse. That doesn’t mean shutting down people’s wishes; but to offer them the earth and then fail to deliver it, is worse than offering nothing at all.
To ensure that this is a reality, we need to better understand what can go wrong. At the conference, Akvile, daughter of a mother who died prematurely, described a series of experiences in which there was no discussion about what her Mum wanted; nor any effort to shape care to meet her preferences. It was clear that this process is not only unsatisfactory for patients, their families and carers but also for many professionals, when it is not done well.
As I reflect on the conference, I am not left questioning the value of ACP, in fact quite the opposite. As our first speaker, Jodie Grace, a paramedic and end of life care champion with London Ambulance Service NHS Trust, recounted, the existence of an electronic Universal Care Plan that clearly spells out someone’s wishes regarding resuscitation and whether they want to go to hospital can have a hugely positively impact on the experience of the individual, their family and the paramedic.
Professionals and the public need to renegotiate ACP’s role and implementation. We must stop using it as a means for professionals to limit people’s care options. Binary choices of home or hospital, resuscitation or not, restrict choice. Instead, we must make it about the focus and nuance of care and the intention to treat.
Those attending the conference were provided with several key pointers for how we can reframe ACP. First was the message that it needs to draw on a series of meaningful conversations, from which any ‘plan’ is simply an output and not the sole focus or entire process. These conversations, which focus on a negotiated possible future, should be at a time and in a place where people feel like they have the agency, vocabulary and confidence to explore a realistic, deliverable wish list.
Then, we need to focus effort where people are most likely to benefit. Increasing numbers of people with frailty and dementia die in care homes, a trend that is only likely to increase. Care home staff are in the privileged and responsible position of knowing these people better than almost anyone. It’s in everyone’s interests to offer residents and those close to them the chance to tell you about the care they want to receive now and in the future. If it’s more appropriate for their GP to have that discussion, then care home staff should be advocating on behalf of the resident.
The impact of these shifts would be significant. As one delegate put it, if they had truly succeeded in supporting someone with their forward planning, it would help that person feel, ‘included, heard, respected, valued, optimistic and less overwhelmed’. Now that’s an outcome every health professional would be proud of and can aspire to.
This is just the start of the conversation. We’re generating further training which includes reframing the language we use when talking to people about ACP. Too often we use euphemisms and expressions that fail to communicate our intended message. There was a consensus at the conference that ‘Future Planning’ might be a more accessible name for the process. Ultimately, shared death literacy is a target we should all be aiming for. Look out for learning opportunities that help us all achieve this.
Do you think that Advance Care Planning is fit for purpose? Leave a comment on this article or join the conversation to share your thoughts.
Professor Heather Richardson is Director of Academic Learning and Action at St Christopher’s Centre for Awareness and Response to End of life (CARE). Email: [email protected] X: @StChrisHospice