5 February 2024
Future Planning: Advance Care Planning Reconsidered
Reflections on our Future Planning conference which took place on 25 January 2024
Our January conference saw participants keen to continue to engage in conversations about more effective ways of future planning. This is exciting and we will ensure there are follow-up events.
Colleagues in Canada have written a wonderful book on this topic – in May we plan to hear more about their work, and build on their thinking to establish next steps.
Heather Richardson, Director of Academic Learning and Action, St Christopher’s CARE
In case delegates had been in any doubt when they signed up for this conference – which took place on 25 January 2024 – there were two big clues as to the tone and direction of its content.
The name most commonly given to this well-used practice in palliative care to determine people’s wishes at the end of life, Advance Care Planning, is definitely up for debate and, as delegates heard, is already successfully being swapped for ‘future planning’ in a number of settings. And, for those expecting to receive a comforting seal of approval for the advance care planning status quo, there was a serious wake-up call.
For the most concise and digestible summary of all the engaging, thought-provoking and challenging presentations and workshops, it’s probably easiest to use the 5Ws – who, what, why, where and when. Pretty much all of key points made and discussed fit neatly under those guidelines.
It probably works best though to shake-up the order a little and to start with why.
Above: Future Planning Workshop
Why do we use advance care planning?
The day started with a very relatable scene setter – in the form of two case studies from Jodie Grace, a paramedic and end of life care champion with London Ambulance service. Jodie shared the marked difference between arriving at the home of a seriously ill person with an electronic Universal care plan that clearly spelled out someone’s wishes regarding resuscitation and whether they wanted to go to hospital, and dealing with the chaos and stress experienced when the person and their family had made no plans and recorded none of their wishes. The impact on the family and the professionals was profoundly different.
So far so positive in terms of justification for advance care planning, especially when, as one questioner prompted, you add in the transactional benefit of time-saving for costly and busy healthcare professionals.
Above: Jodie Grace and Heather Richardson at the Future Planning Conference
The next two speakers, Erica Borgstrom, Professor of Medical Anthropology, Open University, and Jonathan Koffman, Professor of Palliative Care and Associate Director of the Wolfson Palliative Care, Research Centre Hull York Medical School, both raised doubts about the efficacy of advance care planning, albeit from different angles.
For Prof Borgrstom, who has interviewed people to understand their experience of a loved one’s death and the influence advance care planning had on it, the question is whether the process and forms used really address our notion of a ‘good death’. And if they don’t, then their value is really called into question, citing the example of a man who was adamant his wife had experienced a bad death despite it having complied with many of the conventional markers of a good one.
Meanwhile Prof Koffman gave the conference a succinct and incisive summary of recent studies of the effectiveness of ACP, as part of his quest to determine if it works or perhaps even causes harm.
Above: Future Planning Conference delegates
End of life, he said, is complex, unpredictable and ambiguous and the ‘tick-box’ tendency of much advance care planning made him antagonistic towards it. This isn’t helped by the most commonly used outcome measure, or low hanging fruit as he put it, being ‘preferred place of care’, as this doesn’t take into account the quality of the death. That was further supported by the findings of large-scale pan-European trials that found ACP had no influence on many of the key determinants of a good death.
It’s these trials and numerous other studies and reviews that have shifted Prof Koffman from being a believer in the value of ACP to a position where he wonders if it’s a bit like spending huge sums of money to keep a much-loved but ageing car on the road.
So, while the basic premise for ACP maybe good, Prof Koffman challenged delegates to consider re-imagining the concept to better suit the real-world needs of patients that may not understand their prognosis, professionals that don’t always have the skills to communicate and a system that’s struggling with stretched resources.
That takes us neatly onto the second of the Ws – what.
What might more effective ACP look like?
If, the current ACP process isn’t performing the job for which it was intended – to increase the chances of enabling a good death – what could work better?
Prof Koffman offered one proposal himself – Adaptive Care Planning. This involves multiple, in-the-moment, micro decisions with immediate relevance to the individual, rather than big, long-term ones that can feel overwhelming, and which are often undeliverable.
This resonated with a number of delegates, some of whom could see how this approach could mitigate against the real-world issue of not being able to deliver on people’s stated wishes and preferences because of constraints on time and resources.
When it comes to reimagining advance care planning, Malcolm Gill, who coordinates St Christopher’s Death Literacy project, provided a number of examples of new ways of approaching this concept as the hospice looks to engage with groups it’s previously failed to reach. A subtle but meaningful change of language – to Future Planning – has, Malcolm said, taken the edge off and helped people to understand the concept better.
If, for the sake of practicality and being able to store information centrally and uniformly, a form is still part of future planning, the afternoon’s workshops recommended these forms should involve simple, open questions and provide people with the chance to say what they want and not what health professionals want them to tell them. Then, that this single national database should be accessible by all so that everyone has the information, it can be constantly updated and the individual doesn’t have to answer the same questions repeatedly.
To fulfil people’s wishes and preferences, the workshops recommended professionals work from the starting point that the process is at its heart person-centred, relationship-based, open, honest and realistic.
There was consensus across the three workshop groups tasked with creating a new way, that finding the right time and giving the illusion of giving someone time, are two key elements in providing the right conditions for constructive conversations.
Establishing and building trust (something that can rarely be done in the context of form-filling) was another prerequisite, along with asking open ended questions, like ‘what matters to you”, and demonstrating humility by admitting your own ignorance and uncertainties. Malcolm Gill and Rekha Vijayshankar both stressed the importance of committing to understanding cultural differences, be they taboos, or religion based.
Professor Irene Tuffrey-Wijne and her colleagues from the Victoria and Stuart Team at Kingston University, provided a truly eye-opening session, sharing as they did, the inadequacies and inappropriateness of mainstream advance care planning forms for people with learning disabilities, both conceptually and in terms of their language. Together they have created a set of 23 picture cards, designed to help initiate conversations that are meaningful and effective for the individual and health professionals caring for them.
Above: Future Planning Workshop
Who should be involved in advance care planning?
Given that advance care planning is about trying to fulfil the individual’s wishes, it’s imperative that professionals understand that planning is about people and NOT about forms. And, if a form is to be used there’s a serious need to address the question: Whose form is it anyway? Too often, there is a sense that ‘the system’ strips the individual of power.
A number of the lived experiences shared, demonstrated the importance of including and listening to families throughout the planning process. Delegates were also asked to consider looking beyond the family, to someone’s neighbour, for example.
In terms of who should be initiating the conversation, there was agreement that it should be someone with a relationship of trust with the individual, but that it didn’t have to be a doctor or nurse, it could be a Health Care Assistant or a volunteer, as they can provide a ‘soft cushion’ between patients and clinicians.
Just as Malcom Gill and his Croydon Death Literacy project is engaging effectively with young people affected by knife crime, there was a suggestion that the conversation could start with children in schools and, as in most of this project’s groups, involve peer-led support, to overcome any misgivings about power imbalance or lack of trust in authority.
Where should ACP happen?
As Richard, one of the researchers from the Victoria and Stuart team said, lots of people would feel more relaxed having a conversation about their future at home rather than in a clinical setting and being in their domestic environment would provide the health professional with insights into the individuals likes and dislikes.
When should ACP happen?
Like many serious life conversations, finding the right time is essential. Ideally, it was suggested, if the conversation was to be conducted by a GP for example, they should have protected time, rather than try and squeeze it into a 10-minute appointment that was superficially about an ulcer, for example. Ideally, professionals can establish trust, plant a seed and start the conversation sooner rather than later.
Just as important, is the acknowledgement that this is not about one conversation or one form, but should be an ongoing conversation, giving the person and their family the opportunity to reviews decisions and change their minds as circumstances alter.
As one delegate put it, if they could succeed in supporting someone with their forward planning, it would, they thought, 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.
Above: Future Planning Conference delegates
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