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Ways and Means

To say that death and dying is a universal experience is stating the obvious. Yet that does not mean we are adept as a society in conceptualising the process. Part of this is, no doubt, because of our sensitivities and reluctance to truly unpick what dying entails, but a bigger issue is that the ‘end of life’, as an idea, is inherently challenging. There is rarely an objective ‘moment’ at which point the end of someone’s life can be predicted with certainty. Even with terminal illnesses, with a clear prognosis (such as cancer), treatment may still be ongoing until the very last stages – practitioners and patients alike often (and rightly) see death as something that can be avoided for as long as possible. But everyone reacts differently, with different levels of acceptance for when to carry on and when to stop and prepare for death. There is no correct moment for this. A patient’s consultant may well be planning another round of chemotherapy while their GP raises the issue of where one wants to die. This is unwieldy, uncomfortable perhaps, but somewhat inevitable. Because how we want to die is an inherently personal and subjective issue. Practitioners may not agree with their patients – or indeed with other practitioners – regarding the ‘when’ or the ‘how’ of preparing for death. There are no right answers.

This lack of certainty and objectivity about dying is deeply problematic when it comes to trying to plan or support people who are nearing the end of their life. Simply identifying who that population is can be a challenge. And this cannot be fixed overnight or with a simple policy solution. But there are two things we must do.

First, we must think hard about the process we create to help people. End of life care cannot be conceptualised as a neat, textbook element of health and social care, delineated into stages for the purposes of service commissioning and provision. The reality is complex, sometimes chaotic, and always unique to each individual. If policy makers realise this, then we will not try to fit people neatly into a process conceived of in the abstract, but start developing support which begins with people’s personal experiences and ask: what would improve that? Flexibility, responsiveness to change and cultures of care suddenly become more important, while achieving the perfect organisational structure less so.

Second, we must find out what people actually want. This may sound simple enough, but too often people make assumptions about a ‘good death’, conflating it with where people die.

This report is the first of two developed by Demos for Sue Ryder, and addresses the first of these issues. It explores the quality of the patient experience of end of life care, conceived of as a journey through different services, and the sorts of things that can be done to improve this from the patient’s perspective. In some cases this is an issue of learning from, implementing and standardising existing good practice, and in other instances there is the necessity for a more radical cultural shift around personalisation and choice.

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