Offline: “A sea of suffering”

Abstract

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. The consequences are far reaching. Those fighting non-communicable diseases (NCDs) must now supplement their focus on premature mortality with an equal concern for NCD-related suffering. Universal health coverage will only be universal if it includes palliative care. Those financing health programmes, from governments to foundations, must now embrace the essential package promulgated by the Commission. The forces that continue to marginalise palliative care are powerful. Stigma tops the list. Medicine regards the alleviation of suffering as someone else's problem. Palliative care is too often seen to indicate failure—the failure of medicine to cure. The hubris of modern medicine is that it cannot face up to failure. The deification of biomedicine as a discipline dedicated exclusively to survival has created an anti-humanist and quasi-theocratic science of health. But, as the Commission makes clear, palliative care is not about failure. It is fundamental to any notion of human dignity in the face of illness or disease. The Lancet's commitment will be to work with the Commission to expand its network of supporters and collaborators, and to publish regular country-by-country assessments of serious health-related suffering. Measurement is a first step towards independent accountability. A Miami Declaration will follow in the next few weeks: a manifesto to turn the words of the Commission into actions. WHO is already a strong partner, as are global and regional palliative care organisations, such as the International Association for Hospice and Palliative Care. As George Alleyne observed last week, “the echo of this report is global”. He called on the NCD and palliative care communities to work more closely together. Kathleen Foley noted that the Commission was “a watershed moment” in the history of health. Medicine can never be the same again. Palliative care and the endless cycle of serious health-related sufferingAs Richard Horton pointed out (April 14, p 1465),1 obstacles to accessing palliative care affecting those living with serious health-related suffering are, without any doubt, “the most disfiguring inequity in health care today”. Full-Text PDF