What do we mean when we talk about Bridging the Gap?
Three weeks ago we published a new report: Bridging the gap: How to ensure people’s decisions are respected at the end of life. But what do the recommendations mean within the current end-of-life policy landscape?
The last two years have felt like a critical moment for end of life care, with a surge of public and political attention towards investing in meaningful improvements that better support people at the end of their lives. On top of this, the 10 Year Plan for Health has acted as a catalyst for further work, with a mandate to put patient power and people at the heart of policy.
The Single Patient Record, the Neighbourhood Health Framework and the Modern Service Framework for Palliative and End of Life Care are key initiatives underway. If we want these initiatives to work in ways that genuinely unlock better experiences at the end of life, both for people and the professionals caring for them, we need the system to invest and prioritise in doing things differently.
So where does our new research fit into this?
Our new report explores the perspectives of both the people we support, who are engaging with health services at the end of life, and of health and care professionals who are responding to their needs.
It describes how people’s wishes for the end of their life are too often frustrated by a medical culture which defaults to tests, interventions and hospitalisations, without prioritising whether individuals themselves would want this. But it shows that the problem is rarely borne out of a lack of compassion from professionals.
Clinicians who participated in our qualitative interviews described environments where time for meaningful conversations is limited, accountability mechanisms reward action over restraint and ‘doing more’ feels safer than avoiding unnecessary treatment. We heard about a form of “death denial” in professional culture, which is embedded in the structures that underpin healthcare practice and reinforced by training, hierarchy, system pressures and fragmented record systems.
The report’s recommendations aim to bridge the gap between people’s wishes, policy intent and practice. Through better conversations, clearer records, and greater professional confidence in end-of-life decision-making. It calls on the system to foster environments where acting on the decisions of people and their loved ones feels normal, safe and supported.
But how do we create these environments within the levers of our current policy landscape?
We believe the work needs to start upstream with public health approaches and better conversations, and reach downstream into better community provision. We’ve called for:
The Single Patient Record (SPR), being developed for the English NHS, must include people in the last year of life as a priority cohort. It should focus on and nurture people’s ability to record their end-of-life decisions, with this information visible up front, across care settings and geographical boundaries. Preferences and ceilings of treatment need to be known across all relevant healthcare teams and, when a deterioration happens, whoever attends the person knows the right action to take.
The Neighbourhood Health Framework, which states a bold ambition to reduce the number of non-elective admissions and hospital bed days and increase identification of people as they approach the end of life, needs to create earlier, routine opportunities for people to have important conversations about their priorities and preferences for care and to record their decisions if they want to. Otherwise there is a risk that any push for identification and hospital avoidance will end up undermining people’s sense of agency and safety, which will in turn erode trust in services.
The forthcoming Modern Service Framework (MSF) for palliative and end-of-life care should ensure:
- That planning conversations are offered and documented, and ensure commissioning frameworks enable this to be embedded into clinical pathways and regular practice.
- The delivery of an ongoing cross-sector, collaborative public health campaign to help address the urgent need for better public information on what dying looks like, how people can plan for the end of their lives and why doing so can help.
- The expansion of education and training on how to support good end of life care, including through giving end of life care more time during medical school, ensuring early career professionals shadow senior clinicians making best practice end-of-life decisions and mandating continuing training for postgraduate professionals on end-of-life decision making under mental capacity legislation.
Each of these levers are in motion and it’s vital we don’t lose sight of the powerful moment we have in front of us to reshape how end-of-life care is experienced.