Compassion in Dying have launched a new report: It shows that too many people are still dying in ways they explicitly said they did not want. The impact is devastating. People are enduring unwanted treatments, needlessly drawn out deaths and feel powerless over their care.
The report brings together two perspectives – the experiences of people engaging with health services at the end of life, and the perspectives of health professionals who are responding to their needs. It’s based on an analysis of two years of call data from their new nurse led in-depth support service and interviews with frontline clinicians.
It shows that 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 professionals said the problem is rarely a lack of compassion. The clinicians who took part in the research described environments where time for meaningful conversations is limited, accountability mechanisms reward action over restraint and ‘doing more’ feels safer than avoiding unnecessary treatment.
The report describes a form of “death denial” in professional culture, which is not primarily personal but embedded in the structures that underpin healthcare practice. It is reinforced by training, hierarchy, system pressures and fragmented record systems.
The result is that, even when people’s end-of-life decisions are discussed and recorded, they become lost in translation and ignored as individuals move between services, settings and moments of crisis. The report acts as a wake-up call to everyone working to improve the experiences of people at the end of their lives.
The report’s recommendations set out a new and achievable approach to improving dying, through better conversations, clearer records, and greater professional confidence in end-of-life decision-making.
Together we can create a system, where respecting people’s decisions and preferences feels normal, safe and supported.
http://www.compassionindying.org.uk/
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