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A Sea of Suffering

Author: Richard Horton
13 April 2018

How did it happen that palliative care lost the dignity debate? Palliative care is a discipline dedicated to improving quality of life by preventing and alleviating suffering. There can be few higher callings in medicine.

Yet those who advocate “dignity in dying” have successfully claimed that the idea of dignity lies not in palliative care but in assisted dying for the terminally ill. A large majority of the public seems to agree. Those in favour of assisted dying have portrayed palliative care as somehow antithetical to patient autonomy. According to this view, palliative care is conservative and paternalistic. Part of the problem lies in the word. The common and defeatist meaning of palliation is to do something that lessens a problem but does not solve it. Short-term palliatives are negatively contrasted with long-term solutions. Palliative care specialists, despite their growing numbers and their great successes, have failed to win, even barely engaged with, these arguments.

Last week, the Lancet Commission on Alleviating the Access Abyss in Palliative Care and Pain Relief launched its findings and recommendations at the University of Miami. Led by Felicia Knaul, the Commission described how 61 million people are affected by severe health-related suffering, 80% of whom live in low and middle-income settings. 45% of those dying annually experience severe suffering, including 2·5 million children. The Lancet Commission identified a highly cost-effective package of interventions to address this neglected burden of suffering. Commissioners called on the entire health community, indeed the whole of society, to take pain and suffering more seriously—and to take collective action to remedy the access abyss, without question the most disfiguring inequity in health care today. It's hard to understand how the medical community has missed what Eric Krakauer called this “sea of suffering”. But miss it we have, so obsessed have we been with prolonging survival at almost any cost. Our metrics to monitor health must bear some responsibility. Life expectancy, years of life lost, years of life lived with disability, and disability-adjusted life-years (DALYs) have come to dominate the debate about progress in health. These are powerful measures, to be sure. But the great innovation of the Lancet Commission was to devise a new metric—severe health-related suffering—to uncover the epidemic of suffering afflicting communities worldwide. This discovery—and it is a discovery in the truest scientific meaning of the term—is equal to the identification of mental health as a global health priority by measuring DALYs. The story of health in the 21st century has been entirely rewritten by Felicia Knaul and her colleagues. Read more...

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