Health care systems everywhere face a multi-faceted crisis, and care towards the end of life is at the sharpest end of that, from care of the increasingly vulnerable through to extensive palliative care. There is a need to re-think such care to make sure it is actually what patients want, what they need to serve their goals at the end of life, and to shape provision through aggregating preferences and through community engagement rather than structuring care as legacy systems dictate. We need to identify best practice, first in ascertaining these preferences and variations among them, and then in acting on them, often when there are growing uncertainties and resources are constrained.
As well as effective shared decision making necessary to shape treatment in line with patient preferences, the aggregation of data about such choices is required to guide the development of capacity in health systems. And comprehensive end of life care transcends the traditional boundaries of health care systems, of course - ever greater emphasis is being placed on the integration of health care with social care. The way we gather, integrate and deploy data around health and social care towards the end of life is crucial in ensuring that interventions are effectively centred on patients' values, their wants and needs.
Ethically and politically a particularly acute issue is how decisions are taken when a patient can no longer express their own preferences. There are diverse protocols to guide clinicians in these circumstances. But this cannot be resolved technocratically - it requires continuing public engagement and debate.
These questions around end of life care are urgent globally, and innovators and pioneering organizations in the US, Europe and low and middle income countries are making breakthroughs. The time is ripe to ensure that these are scaled up and replicated to the benefit of general populations - bearing in mind that the resources necessary for effective care varies greatly across the social spectrum and in low and middle income countries. Less wealthy countries can often teach much across borders as to innovation and the most effective use of resources, to the benefit of other countries, rich and poor. This applies to end of life care for younger populations just as much for elders. But no country, whether the United States or in Europe, is in a position to continue “business as usual” and meet the challenge of ageing populations.
The 60 participants were drawn from all regions of the world and will include health and social care leaders and practitioners, patient advocates, innovators, ethicists and policymakers, along with representatives of civil society, the media and other stakeholders in the debate. They worked together in country and thematic teams.
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