2018; Volume 19, No 1, January

Featured Article

This feature article describes The Lancet Commission Report on Palliative Care and Pain Relief, an important addition to palliative care literature in which IAHPC board member Erik Krakauer, Executive-Director Liliana De Lima, and Chair Lukas Radbruch played key roles. They, plus 58 other co-authors from 25 countries worked three years to produce the extensive report. ‘The gravity of the problem, the importance of the report, the compelling equity imperative of the topic, and the fact that it had been largely ignored as a global health priority made it a priority for The Lancet,’ says lead author Dr. Felicia Knaul. And it doesn’t end here; The Lancet asked the authors to submit a one-year follow-up.

The Lancet Commission report:

Alleviating the access abyss in palliative care and pain relief — an imperative of universal health coverage

There is a gaping abyss between those who receive palliative care and pain relief, and those who do not, the 2017 Lancet Commission report reveals. While rich people are not exempt, suffering is disproportionately borne by those living in poverty, even if they live in wealthy nations.

Photos courtesy of Moonshine Agency, Life Asked Death film.

Dr. Felicia M. Knaul, PhD
Lead author Lancet Commission Report

‘It’s the heinous reality in most countries,’ says Felicia Knaul, lead author and Chair of the Commission, a health economist, Director of the Institute for Advanced Study of the Americas, and Professor at the Miller School of Medicine at the University of Miami. ‘People die in agony, and their loved ones suffer the trauma of watching them die.’

Unless the sufferer has the good fortune to live in a country with comprehensive universal health coverage that includes palliative care.

Lessons learned from the US and Western Europe

‘There are very clear lessons of what not to do, derived from problems witnessed and suffered in the US,’ says Knaul. ‘The gold standard are countries such as Ireland, Germany and Austria in Western Europe and Australia, where there is universal access to pain relief and palliative care, and little to no evidence of non-medical use of opioids. They’ve gotten over opiophobia.’

A balanced set of crucial recommendations for low- to middle-income countries (LMICs) emerged: first and foremost, universal access to off-patent, injectable and oral immediate-release morphine; universal competency-based training of all medical personnel; and zero marketing of controlled medicines to health professionals or patients.

IAHPC board member and 2^nd author of the report, Dr. Eric Krakauer, led the work to establish an Essential Package, appropriate to countries even at the lowest levels of income, to meet the need for palliative care and pain relief. The desire to meet those needs provoked the Commission to quantify the burden of serious health-related suffering for the first time, says Knaul.

Collective action, catalyzing change

International collective action to close the deep divide between rich and poor is imperative, the report states. ‘Our experts – with decades of global health experience – believe it is one of the most inequitable distribution of a health intervention that we have ever seen,’ says Knaul. Unlike many global health priorities, affordability of distributed morphine-equivalent opioids is not the greatest barrier to access, and equity-enhancing, efficiency-oriented, cost-saving interventions exist.

Barriers include:

• a medical focus on cure and extension of life
• an economic focus on productivity
• prejudice and misinformation about opioids
• limited patient advocacy

‘A simple shadow report could be produced by any NGO easily,’ suggests Knaul. ‘The report can ask: Does my country have a national plan for palliative care? Does it have access to pain relief? What is the legal situation? Is there a package of covered care? Making these comparisons will help with advocacy. People and politicians can be made aware, to care and to help.’

Photos courtesy of Moonshine Agency, Life Asked Death film.

The 61 co-authors are agents of change, and their research is a powerful instrument. But the report is designed to provide tools to other policy makers and advocates to generate many more emissaries.

As an example, ‘In Mexico, where I lead an NGO, the report is helping us to push forward policy change, and the creation of a national association for palliative care and pain relief,’ says Knaul. ‘This report helps to catalyze and catapult global access to palliative care and pain relief.

‘One thing I really want to get working on,’ she adds, ‘is I think we can easily move to an evaluation framework so that we can see if systems to provide access to morphine are improving or not. We can help countries track progress. We figured out the metrics; we now have a reasonable denominator.’

Spreading the word, broadening the focus are key tactics

To translate the report recommendations to action, the Commission established an implementation group anchored by the IAHPC. The group includes representatives from other global, national, and regional civil society networks to develop an advocacy agenda, national toolkits, and a monitoring framework.

According to Liliana De Lima, IAHPC Executive Director, coordinator of the Implementation Group, and a Lancet Commissioner, in this next step ‘we will focus our efforts in providing technical support and guidance from the experts in the field, to help governments and civil society adopt and implement the recommendations from the report, in particular those related to education, policy, access to medicines, and care provision. This includes ensuring the availability and access to the medications and equipment included in the basic and the augmented Essential Package for palliative care.’

Photos courtesy of Moonshine Agency, Life Asked Death film.

The implementation group has a one-year mandate. Its work will be summarized in a monitoring report submitted to The Lancet.

Mindful that universal health coverage is integral to the goal, broader platforms for integrating messages of the report are being sought.

‘The demand for palliative care is going to increase,‘ Knaul says. ‘If we don’t figure out how to meet that need, the burden of care will fall more and more on women, and especially poor women. If we can introduce the issue into the platforms and movements for empowering women’s and reducing poverty, for instance, it will get a lot more traction.’

Radbruch: ‘Why is the report important?’

‘Why is this Lancet report important at all?’ asks Lukas Radbruch, IAHPC Chair of the Board of Directors, Chair of Palliative Medicine at the University of Bonn, and President of the German Association for Palliative Medicine. ‘We have a resolution from the World Health Assembly in 2014, stating very clearly that palliative care is important and should be a component of health care in every country of the world, and should be included in health care budgets even in very poor countries.

‘However, in the three years since, a lot has happened on the international stage related to global health care goals, for example in the discussions around the sustainable development goals (SDGs), more specifically on the third SDG — universal health coverage (UHC) — or around the focus on non-communicable diseases, for example, in the current preparations for the WHO work plan for the next few years. Unfortunately, palliative care has not been included in these activities, or only in a very reduced role.

‘The Lancet report has come at just the right time to give palliative care a boost on the international stage. Having one of the most renowned scientific journals report on the need for palliative care, and deliver new ways to describe the need and calculate the means that are necessary to alleviate the suffering (which is amazingly little!) does deliver very strong evidence that is hard for national or international decision-makers to ignore.

‘This report is a compendium of good arguments that we should use in our advocacy for access to good palliative care for every person who needs it,’ Radbruch says, ‘no matter where they live or how much they can pay.’

Links

• The Lancet Commission report on palliative care

A personal reflection on health-related suffering

Throughout the year, IAHPC board members contribute a range of opinion pieces and other thought-provoking articles to the IAHPC Newsletter. Here, Dr. Eric Krakauer reflects on pain, suffering, and the primary role of doctors and nurses. Dr. Krakauer is Assistant Professor of Medicine and of Global Health and Social Medicine at Harvard Medical School, Boston, Massachusetts, USA, and Visiting Assistant Professor of Medicine at the Ho Chi Minh City University of Medicine and Pharmacy, Ho Chi Minh City, Vietnam. He is also the 2nd author of the Lancet Commission Report featured in this edition of the newsletter.

Lương y phải như từ mẫu: A doctor’s duty

Human beings, no matter how strong or powerful, are vulnerable. We suffer and die. We become weak and unable to care for ourselves. We suffer from pain and other physical discomforts. We suffer from anxiety and depression and other forms of emotional distress. We often suffer the loss of loved ones, of our home, of our ability to work, walk, feed ourselves, and use the toilet. And, perhaps unlike any other living being, we suffer from anticipating death: our own death and the death of loved ones.

Medicine exists because of human vulnerability. Its most essential purpose is to relieve human suffering. In pursing this goal, modern medicine often becomes focused on curing disease, clarifying scientific mysteries, and conquering death. While these goals are extremely important and laudable, they are secondary. And when modern medicine becomes caught up in these secondary goals, focuses exclusively on them, it can inadvertently ignore opportunities to relieve suffering and sometimes even cause or exacerbate it. Palliative medicine has arisen because modern medicine often becomes caught up in these secondary goals and, as a result, forgets its primary responsibility to relieve suffering.

There is a traditional expression in Vietnamese that can be seen displayed in most Vietnamese hospitals: Lương y phải như từ mẫu.. It means: Doctors must act like gentle mothers. As doctors, our duty is to recognize and never forget that our patients are vulnerable. That we have great power over them, and that we always must use this power to comfort them, to benefit them, and to ‘protect them from harm and injustice,’ as it says in the Hippocratic Oath. Like gentle mothers, we often must do this even when there is some cost to ourselves: when we must work beyond exhaustion in the operating room, or take some risk of acquiring an infectious disease, or look deeply into our patients’ most disturbing physical and psychological wounds. This expression reminds us of the essence of medicine. And of nursing. And in a sense, these words are a call for palliative care.

Some years ago, I went to see patients at a hospice for homeless mothers and children with AIDS in a poor country. There, I found a little girl, frail and pale, very close to death and gasping quietly. Her young mother sat just next to her dying daughter’s simple bed, silently weeping, silently wishing that she could trade her own life so that her child could live. The child’s feeble gasps, and her mother’s silent tears, issue a loud and clear call. They create a responsibility to respond, a duty. It is our duty to do all we can to relieve this suffering. And it is also our duty to advocate for these people, to speak for them when they have no voice, to amplify the call that we feel within us and of which this admonition reminds us. Lương y phải như từ mẫu.

• Read Eric’s bio on the IAHPC website.

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