Palliative Care in Deep Time

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The prevention of premature or avoidable death from epidemics, infectious diseases, maternal child health deficits, non-communicable diseases, and so on, dominates the global health narrative heard throughout academia, the World Health Organisation (WHO), and most health focused non-governmental organisations. The WHO measures successful global health interventions by their effectiveness in increasing life expectancy and decreasing premature mortality. According to health economists, these provide the “best buy” — the biggest bang for the global health investment buck. Global health champions rarely discuss the fact that the increased life expectancy achieved does not translate into better quality of life for its beneficiaries, and that no matter how advanced, the health sciences have yet to put an end to dying itself.

It is not news to public health scholars and geriatricians that increased life expectancy results in more disease, disability, dementia and accelerated aging. The acute suffering these conditions produce in increasing numbers of individuals and families, and the costly burdens of this “success” on health and social budgets, expose the shortcomings of any global health narrative that excludes palliative care. The global health king has no clothes in public health systems that lack universal access to palliative care.

Palliative care gently extends global health’s mortality prevention telos. The definition of palliative cares stipulates that it neither postpones nor hastens death. This positions palliative care at the nexus of chronological and deep timechronos and kairos  — the lifecourse and the mystery — giving practitioners and patients access to more resources for transforming and integrating serious health related suffering. 

Since palliative care accepts the chronology of a modern human life, while at the same time open-heartedly entering into the mysteries of living and dying, it completes the currently foreshortened global health narrative, which although intent on reducing premature mortality through the life course, is powerless in the face of non-preventable death.

An existential challenge with global palliative care advocacy, much like with climate emergency advocacy, another new element in the global health agenda, is that it requires policymakers to project into the future, to an experience few have ever encountered “up close and personal.”  Palliative care’s practitioners, supporters, and advocates tend to be called through a personal encounter with death, usually of a loved one. The quality of that experience, or lack thereof, more often than not confers the palliateur vocation.  In the absence of such a personal experience, it is difficult for the “death naïve,” including key policymakers, to imagine or understand the urgent need for public health, rather than simply philanthropic or private, provision of palliative care.

That peculiarly personal difficulty has exponentially dangerous public policy consequences, as the dying badly and climate crises are both already upon us. Soon everyone will be affected personally, but the question is, will policymakers be prepared to meet the acute population level health needs associated with both? The answer is clearly no, unless policymakers and voters are prepared to think long term about caring for aging populations (themselves) with chronic diseases, as well as attending to short term epidemics and health security. The alternatives for those whose deaths can no longer be prevented are abandonment, euthanasia, and overtreatment, whose costs have both direct and knock-on effects on household wealth and development.

Palliative care is the ethical fourth way between abandonment, overtreatment, and euthanasia. It is a multi-disciplinary response to non-preventable death that reduces suffering in both quantifiable and non-quantifiable ways. Palliative care practitioners can relieve severe pain and symptoms, and provide a context for “good,” as opposed to “bad” dying in the ICU, or at home in the center of a stressed-out family. Palliative care is not a death sentence, but a way to make life, and non-preventable death, as un-traumatic as possible by reducing suffering wherever possible. Publicly provided palliative care can help in the effort to build civic trust and resilient communities, the foundation of the 2030 Agenda for Sustainable Development.  

Palliative care and the Beloved Community

The late Congressman John Lewis (Image by Trent Gillis)

“You live it [the Beloved Community] as if you’re already there, you’re already in that community, part of that sense of one family, one house. If you visualize it, if you can even have faith that it’s there, for you it is already there. And during the early days of the movement, I believed that the only true and real integration for that sense of the Beloved Community existed within the movement itself.”

Congressman John Lewis, interview with Krista Tippett, On Being

Reflecting this past week on the homegoing of John Lewis, the passing of a prophet, and all the great eulogies and tributes that poured in for him, brought me back to some work I had begun a while ago on how palliative care practise from the bedside to advocacy in the halls of “power,” co-creates the Beloved Community. One of the many things I loved about John Lewis’ interview with Krista Tippett was his saying that the the civil rights movement was able to persist and grow, even in the teeth of violent opposition, because of the participants’ sense that the Beloved Community already exists.

This paradoxical sense of simultaneously co-creating or enacting what already exists reminds me of how I feel about global palliative care advocacy: we persist in the halls of power and on Zoom (!) to insist on the integration of palliative care into health systems, even in the middle of a pandemic. We do this in the teeth of the indifference of the global health movement, which is fixated only on vaccines and reducing avoidable mortality, ignoring the actual mortality and suffering that accompany the illness and deaths everywhere from multiple causes, and now amplified by the virus. We persist in this work grounded in faith, whether religious or humanistic, in nonviolence, and in compassion even when all hope seems to be lost, and when the wind seems to be against us rather than behind us, because the Beloved Community is present in each patient, family, and palliative care team at the bedside.

Dr. Martin Luther King’s conception of the Beloved Community was “a global vision, in which all people can share in the wealth of the earth. In the Beloved Community, poverty, hunger and homelessness will not be tolerated because international standards of human decency will not allow it.” Fortunately, as a result of relentless advocacy, the international standards of human decency codified in international human rights laws and resolutions of UN agencies now support the development of palliative care as en element of the right to health. And compassionate communities, which are springing up all over the world, are microcosms of the ‘already there but not yet’ Beloved Community.

Were Congressman Lewis still with us, it is doubtful that his words, his legacy, and his prophetic life would have the resonance and amplification they have had in the past week. They have been dispersed much more relentlessly over the airwaves and the internet than in his entire life. They have the power to change some of the choices people will make in the coming days, weeks, months, since as we all know, whether or not we are aware of knowing it, the planet is at an inflection point, and the choices are clear:

As the clever hopes expire
Of a low dishonest decade:
Waves of anger and fear
Circulate over the bright
And darkened lands of the earth,
Obsessing our private lives;
The unmentionable odour of death
Offends the September night.

[…]

There is no such thing as the State
And no one exists alone […]

we must love one another or die

WH Auden, September 1, 1939

As Dr. Max Watson said in this morning’s palliative care webinar, hosted on Zoom by the Public Health Foundation of India, “palliative care begins in your heart and in your desire to see in the other in yourself, your family, or someone you care about.” The heart as the starting point is the seat of courage — from the French word coeur — the courage to be with suffering, whether physical, emotional, spiritual, or social — and to alleviate it wherever possible. Palliative care always adapts itself, as Harsh Vardhan Sanhi, another webinar speaker said, to the context and to the patient. It is infinitely flexible, comfortable with chaos, and thus mimics the cosmic interconnectedness, or implicate order, which the COVID virus is exposing and challenging.

John Lewis also talked about how the sit-ins and marches were “love in action.” Palliative care is also love in action, and while we often liken our advocacy to pushing a huge rock uphill — the rock of the imperative of relieving serious health related suffering up the hill of biomedical ideology — we know that even if we don’t see the results of our work, we are laying the foundations of a new society.

Lewis urges us not to be discouraged and argues for the long view:

It’s going to be OK; it’s going to work out. If it failed to happen during your lifetime, then maybe, not maybe, but it would happen in somebody’s lifetime. But you must do all that you can do while you occupy this space during your time.

the Late Congressman John Lewis, interview with Krista Tippett, March 28 2013

How better to occupy this space during my time than to advocate for ‘love in action’?

Book Launch “Global Palliative Care: Reports from the Peripheries” with Drs. Anne Merriman and MR Rajagopal

I was deeply touched to have Dr. Anne and Dr. Raj attend the zoom launch of my new book, Global Palliative Care: Reports from the Peripheries. Anne and Raj are my two original mentors, who alerted me, a hospice volunteer and unemployed political theorist, to the issue of lack of access to morphine and palliative care in more than 75% of the world. I was so horrified by this stark fact — as they both described the lack of access in Uganda and Kerala, as did Ana Restrepo for Colombia — and how challenging it is to develop services to meet the overwhelming need, that I resolved to spend the rest of my life serving this movement. The book is dedicated to my mother June, whose birthday it was on June 4, and who died at 51 in terrible, unmanaged pain and distress, in a high income country, 40 years ago, without palliative care.  Because there wasn’t any. So I have a sense of what it’s like, magnified to the nth degree.

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My mother June, holding my older brother Winston, while the “clown” restrains me!

Anne, Raj, and I have since become good friends and colleagues, collaborating in any number of projects and site visits, where I have the privilege of seeing patients with them and their staff. Any royalties from the book will support scholarships for nurses at the Institute at Hospice Africa Uganda, founded by Dr Anne twenty years ago.

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Dr. Anne Merriman, Founder of Hospice Africa Uganda

Dr. Anne fell and fractured her pelvis the other day, having walked around her porch with her walker for several months before her fall, to raise money for Hospice, so spoke to us valiantly from her hospital bed about her new organization Alumnethos. She shared her hope that the HAU ethos, which always puts the patient and family at the center, will spread to all healthcare providers everywhere.

Dr. Raj called in from India, even though it was very late there. He reminded us that every year, 55 million people a year are pushed below the poverty line by catastrophic health expenditure.

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Dr. MR Rajagopal, Founder of Pallium India

He also told us that the rich die even worse than do the poor in India, because they die in ICUs, hooked up to tubes and monitors, whereas at least the poor have a family member to put some water to their lips if they are thirsty.  Friends I haven’t seen for years joined from around the world, and my brother Willie called in from Berkeley Ca, to represent the family. The cover art of the book is a collaboration between myself and my sister, Ruth Pettus, a painter who lives in Baltimore. She did some work on the print of a photo I took in Addis Ababa at a visit with Hospice Ethiopia to the home of a dying patient. COVERDr. Anne, who led the team from Hospice Africa Uganda, had accompanied us to titrate her morphine and reassure her family caregivers.

I said a few words about the book, which is a collection of blogs and essays written pre-pandemic, since 2014, and read the texts of one of the blogs that is reprinted in the collected volume. The lockdown in Spain forced me to get to work and curate the writing I had done from some of the places I have been fortunate enough to visit, in case the virus had its way with me.  Much is left out of course — it represents a mere fragment of the work that is being done at the peripheries — but that leaves room for a next installment, which might be an edited volume of blogs/stories/essays from other palliative care volunteers, patients, providers, and advocates. We are a global movement, and in order to exercise agency as such, we need to develop a deeply person-centered narrative alongside the clinical/academic/technical narrative because only the former has political power.

Ω

This book is a tribute to the palliative care providers, patients and families I have met all around the world, beginning with Dr. Anne and Raj, and Anna Restrepo from Colombia, who I met in Fresno more than ten years ago. What I see, and what I get to participate in, is actually a global palliative care movement, that many of the “agents” don’t realize they are part of.

So this book is meant to bring some self-awareness to that movement, and to express my faith and confidence that we will change not just medicine and our communities, but the world itself, if we can just keep plugging away at this and not think too much about results, but about the patients and families in front of us, and what they need. Another way to put this is that at every bedside, palliative care creates what Dr Martin Luther King Jr called “the Beloved Community.”

I am very privileged to be one of the voices of that movement, at the global level, in the UN Agencies. I don’t speak for myself, obviously, I speak on your behalf, and on behalf of all your patients – AND those who are suffering without palliative care – in the negative space that we are trying to bring into the light.

Palliative care practice is politically subversive, although not in the conventional sense of political campaigns that cause harm by seeking power or shaming opponents. Its virtues and ethics are deeply political in the classical sense though, a sense that has been largely forgotten, but is immanent in our political DNA. These virtues are expressed in the friendship, courage, and honesty (truth-telling) that exemplify best practice palliative care.

When the ancient citizenship virtues are practiced in the modern context of the private realm, at the bedside, palliative care communities are actually reconstructing the genetic material of the public sphere, much as stem cells do. They are rebuilding damaged ethical tissue from the inside out, causing the dominant system or politeia—body politic—to shed its old skins, and reorient itself toward the common rather than the private good.

Palliative care and hospice practice inspire learning along spiritual, as well as clinical and psycho-social dimensions. Practitioners’ proximity to death and embrace of vulnerability, advances the emotional intelligence of society as a whole. We have the privilege of accompanying people who are journeying between the worlds, our ‘patients’. They and their personal caregivers have so much to teach us about what is really important during their final months and days.

Those teachings usually concern the values of surrender and open heartedness, as well as struggle. Surrender, paradoxically, opens human consciousness to truths and realities that are not otherwise apparent when we are immersed in the more “worldly” dimensions of achievement and commerce. Contrary to the mainstream understanding, rather than showing weakness, surrender reveals the inherent power in vulnerability, which calls forth our better angels of compassion and accompaniment.  

Bedside practice teaches us to slow down, listen, and be respectful of both the “undignified” and the unfathomable. What we learn there informs our family and public lives. It creates a ‘meme’ that can replicate effectively, transforming other key domains of our worlds.

May the vision of universal palliative care become a reality!

 

Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires a strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then, I account it high time to get to sea as soon as I can.

Palliative care as spiritual friendship in the ‘black river of loss’

Writing on Good Friday from lockdown in Spain, I am reflecting on what I am grateful for in these very challenging times. My family of course, my faith, and also my job. One of the main reasons I work as a global advocate for palliative care is because I admire and love my colleagues all over the world so much! That love and admiration gets me up every morning to support their work at the bedside by advocating through the UN system for supportive standards, policies, and budgets in all countries, in conformity with international law.

Palliative care is a unique bio-psycho-social-spiritual approach to serious illness whose practitioners, unlike most clinicians, see attention to “spirituality” as an essential element of delivering services, including being with dying. Not being with “the dying” necessarily, but being with dying as a process to which, all life is subject.  Spiritual care includes both providers and patients, and creates provisional communities, or ecclesias of care. Spiritual care is not necessarily religious, and can be described in secular terms as a form of friendship, or being for the other, as Aristotle described it. 

Ecclesia means “those who are called out or summoned.” Palliative care practitioners are “summoned” to accompany those who are seriously ill, and to alleviate their suffering, physical, emotional, and spiritual. Palliative care teams that escort the dying and their loved ones to the frontiers of the unknown, exemplify what ancient and medieval philosophers called the virtue of friendship. Aristotle described friendship as a relationship that wants only the good of the other, for the friend [not for oneself].  In the Christian context, the virtue of friendship, or spiritual friendship, prefigures the friendship with, and of God. Indeed, in the Sufi spiritual tradition, Rumi calls God “the Friend.”

Both secular friendship and friendship with God demand commitment and practice. As the ancients saw it, the virtues had to be practiced in order to take hold in an individual or a community. When I was taking my RCIA (Roman Catholic Initiation for Adults) courses before my baptism several years ago, my teachers told me that friendship with God was like any friendship, requiring dedicated time, maintenance, attentive conversation, etc. And just as human friendships die when those things are neglected rather than nourished, so does friendship with God. Or it just never gets off the ground. The bottom line for those of us who profess a faith is that unless our work embodies service and love of neighbor, we can’t think of ourselves as God’s friends.

It seems to me that we can practice for or rehearse this friendship with God by hanging out and speaking our truth with friends in this world. Our friends are people who challenge us spiritually, emotionally, and intellectually. They challenge us while loving us for who we are. And by loving them for who they are, we imitate what scripture tells us is God’s love for us. This sort of friendship in the world gives us, or at least gives me, the fortitude to be out in the world and to toil, as Jesus describes it, in the vineyard, one of the metaphors for the kingdom.

Palliative care volunteers, clinical providers, spiritual counselors, and social workers accompany, or escort, patients and families to the frontiers of the kingdom, whatever any of their individual conceptions of that unknown space happen to be. The gospels describe the kingdom as an energetic space where there is no fear. “Fear not” are the two words spoken most authoritatively throughout the New Testament, often by angels, God’s ambassadors.

The kingdom of Jesus’ praxis — he doesn’t just talk about it, he enacts it — is a space where the outsider, the weak, the vulnerable, and the dependent, are accepted and welcomed. It actually invites the seriously ill, weak, paralyzed, and actively dying, to enter this space configured and prefigured by the frequencies of committed friendship. Palliative care is a practice, or praxis, of committed friendship, based on truth-telling, courage, and generosity, the other cardinal virtues.

Of course, the more secularly minded can take God and the kingdom out of the equation altogether, and make the practice of escorting the dying and their families, both spiritually and clinically, a practice of friendship tout cort. Many palliative care providers I know do that. That would be enough. It is more than enough, given that so much energy is needed for palliative care to take root in the world, and for its potential as an agent of social change to grow and flourish. Palliative care prefigures the kingdom whether or not its practitioners think of themselves as “spiritual” or religious. It simply emerges from their work.

One of the hardest aspects of friendship is allowing it to go, either when the friend dies, or when the friendship itself dies a natural death. This is the “black river of loss” Mary Oliver talks about and the need to do three things:

to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it
go,
to let it go.

But what about loving the immortal? Practicing friendship, the loving and the letting go, both among ourselves and with our patients and families, brings what Jesus called “the kingdom” to life, and teaches practitioners, through many fits and starts, to be friends of God’s. That is a status I covet, meaning I have a lot of spiritual work still to do!!

Palliative care patients in negative space: the politics of invisibility

“For nothing is hidden that will not become evident, nor anything secret that will not be known and come to light.” Luke 8:17

San Quentin State Prison, CA, USA

One of the most challenging aspects of being a global advocate for patients and families needing palliative care is that the vast majority of those with unmet needs are hidden away from view. They are invisible to the public, health systems, and policymakers. The patients I have seen with the palliative care teams I have gone out with in Addis Ababa, Bogota, Nairobi, and Kerala are as hidden as those who are locked up and dying alone in prison.

Improving access to palliative care for prisoners involves gradually bringing that stigmatized invisible population back into focus for policymakers. I cannot give firsthand evidence. I am not allowed see the conditions under which prisoners die, because the prison is a closed world. I’m not allowed into the cells at San Quentin, only into the visiting area, and into the chapel for a graduation ceremony for men trained to care for dying cellmates. I only can hear what it is like from those who have been released or can talk about it inside to someone else able to get the word out, sometimes through film.

Invisible patients in countries with weak health systems are not concentrated behind walls though. Once they have gone home to their village, barrio, or suburb to die as instructed, they disperse, and the public health service usually loses track of them. They pass through the veil into invisibility. The result, as the Lancet Commission on Pain and Palliative Care pointed out, is that researchers never measure their suffering. And since what is not measured is not done, the suffering continues unabated. It can only abate once advocates make these patients, their caregivers, and their unmet needs more visible to policymakers and funders, retrieving them from negative space by giving them voice. Palliative care teams can only identify and visit the patients who have been sent home to die if hospitals and clinics refer them, extending the net of care, rendering them visible to palliative care providers, and through advocacy, to policymakers.

National and local palliative care associations can advocate for patients and families. They can monitor the referral systems and ensure the ongoing development of a trained workforce and adequate supply of controlled medications meets patient needs. This requires close collaboration with government agencies in charge of health, education, ‘drugs’ and social care. The process of education and advocacy for sufficient procurement of essential palliative care medicines for the relief of severe pain and symptoms such as breathlessness, is ongoing.

Another challenge of this work is accepting the slow pace at which the system change we so urgently need, takes place. It is tempting to get frustrated! Integrating palliative care into health care systems and ensuring adequate access to controlled medicines in the context of drug control systems by definition entails systems change, which is slow. Elites tend to resist it, fearing loss of power. I find it hard to accept that the change must take place in God’s time not mine, when so many patients are suffering so acutely all over the world for lack of adequate care. Van Gogh’s image of the sower helps me to remember we are sowers, not reapers; early adopters who have been fortunate enough to see the value of palliative care, often for our own family members. The challenge is to make the invisible visible so those those with eyes that can see bring about the change. We do that through evidence based advocacy and partnership building.

What is hidden will come to light.

How stigma and single payer systems can solve the opioid crises

Morphine is a stigmatised medicine. It is associated with cancer, death, and end of life care. Purdue Pharma took care to distinguish OxyContin, its brandname opioid, from morphine, saying it “didn’t want OxyContin “to be polluted by all of the bad associations that patients and healthcare givers had with morphine.” Morphine is so stigmatised that, in some countries it is often kept in locked boxes marked “Poison.” It is also an “essential” palliative care medicine, used where available by appropriately trained practitioners, to relieve severe pain and breathlessness.

Single payer healthcare systems, like morphine, are also stigmatised, particularly in the US, which labels them “socialised medicine,” and there is a growing push, even in Europe, for privatise healthcare, particularly given the high cost of medicines and medical devices. Yet a single payer system may be a government’s optimal mechanism for ensuring access to essential medicines for palliative care and treatment of substance use disorder, while preventing an epidemic of non-medical use of opioids, such as that reported in the USA.

It’s crunch time for all the UN member states that have committed to the seventeen goals of the 2030 Agenda for Sustainable Development, which replaced the Millennium Development Goals in 2015. Governments now have 10 years to meet the 169 targets, one of which, Target 3.8 of the health goal, stipulates integration of the spectrum of primary health services under Universal Health Coverage (UHC). This spectrum includes adequate access to treatment for substance use disorder and to palliative care services. Since both entail adequate access to opioids, governments aiming to hit both targets will have to acknowledge and overcome the stigma that attaches to all opioids, both legal and illegal, in order to use that stigma to their advantage. Opioids included in the World Health Organisation (WHO) Model List of palliative care medicines are considered essential, which means they should be available, accessible, and affordable in the public health system at all times. The kind of public health system that best supports this palliative care objective and the objective of preventing diversion and harmful non-medical use is a largely public, or single payer system.

Governments wanting to hit the Target 3.8 component of ensuring access to essential medicines must ascertain if they have an opioid access crisis. Chances are that they do, since more than 2/3 of the world’s population lives in countries with low to inadequate access to opioid analgesics. If they do, improving availability of those medicines without triggering an excess crisis like the one ravaging parts of the US and Canada (which would undermine progress toward Target 3.5, “Strengthen the prevention and treatment of substance abuse, including narcotic drug abuse and harmful use of alcohol”) they must act as a single payer for medical opioids and and make a public commitment to ensure adequate availability of internationally controlled essential medicines for medical use under UHC.

Acting as a single payer is a necessary, but not sufficient, condition for achieving both SDG Targets. Government procurement agencies in such a system will also have to overcome the stigma attaching to morphine, and forgo the attractions of the more profitable “designer drugs” peddled by the pharmaceutical companies. The profits attaching to these medications also make them more susceptible to diversion and trafficking, as the textbook case of the US opioid crisis demonstrates.

That said, it is disingenuous for US courts to hold the pharmaceutical industry accountable for the damage done by the opioid epidemic. Not because the corporate executives have clean hands in the case, but because the mandate of corporations is to maximise profits for shareholders, not to protect the public good. It is the government’s job to protect the public good, which includes the public’s health, from the harms generated by private interests, in this case the harms caused by “diversion and abuse” of substances under international control (opioids), and lack of access to opioids for medical purposes. Since industry’s job is to maximise profits, it must be expected to market legal commodities (such as branded designer opioids) even if they are harmful to public health. Government’s job is to limit those harms to the greatest extent possible. The US government, specifically the offices of Health and Human Services and the US Drug Enforcement Administration, failed spectacularly in this regard.

According to the media narrative, the regulatory agencies failed because industry influenced a majority in Congress to circumscribe the power of the DEA. As a result, cities, states, and tribes have to sue the pharmaceutical companies in civil court for ‘the damage done’ as Neil Young put it back in the day. This begs the question, though, how could Congress have been bought off in the first place? And what other regulatory measures might be necessary to head diversion and misuse off at the pass, so public health systems don’t have to deal with the downstream effects such as an epidemic of deaths from overdose?

Painting by Ruth Pettus, used with permission

The answer to the first question concerns the well known role of money in US politics and the rights of corporations to influence the political process. This political configuration is not universal though, and in many countries influence peddling is a criminal offense. Countries with high corruption indexes will be vulnerable to the power of big pharma of course, but can strengthen their public health systems to provide an adequate defense.

Countries and sub-units of governments that have succeeded in balancing the imperatives of supply and control of medications containing opioids provide best practice models that exemplify political commitment, often generated and supported by the dedicated advocacy of non-governmental organisations of providers and patients, to ensure adequate access to opioids for medical purposes while preventing diversion and non-medical use. Public health systems such as Colombia’s, which provide basic coverage for the whole spectrum of services, and in which the government acts as single payer for medicines, are the most strongly immunized against an opioid epidemic. Of course this does not describe the US model, which combines public and private services and multiple payers.

In sum, the necessary and sufficient conditions for governments to achieve both Targets 3.5 and 3.8 are that they act as a single payer for medical opioids and commit publicly to adequate availability of generic (stigmatised) internationally controlled essential medicines for palliative care and treatment of substance use disorder. It’s a ‘both/and’ not an ‘either/or’ prescription. The risk of diversion to the illicit market is minimised, since government procurement agencies will avoid purchasing the profitable “designer drugs” peddled by both pharmaceutical companies and traffickers. Governments that procure generic oral morphine and methadone in bulk as the staple medicines of choice in the public health system can use stigma to their advantage, getting a bargain on efficacious and essential controlled substances that are unattractive to the black and gray markets.


[i] UNODC, which is responsible for executive tasks regarding both,  coined this term

Punishing big pharma through the courts exposes democratic deficit

Opioid policy nerds will doubtless have read the most recent Lancet Editorial on the J&J opioid verdict handed down by a federal court judge in Oklahoma. The critique, entitled “Lawsuits alone will not fix the US opioid overdose crisis,” doesn’t go quite far enough to identify the real culprit, which is the democratic deficit in the US. The democratic deficits drives health system deficits, particularly in the domains of mental health care and treatment of substance use disorder. My earlier blog, which speculates on how repercussions from the verdict could harm palliative care patients, can be found here.

The Lancet editorial claims that

“Pharmaceutical companies did not create the situation alone. Government at all levels in the USA and abroad and health-care providers played a role. Addressing the crisis must go beyond just financial penalties to ensure support and care for those affected. As important, medical professionals and institutions at every level need to begin rebuilding the trust that cynicism and the profits-above-patients nature of the opioid overdose crisis has badly eroded.”

Unpacking this correct, but incomplete, assessment from an explicitly political perspective exposes government’s role in the opioid crisis as one of omission, rather than than commission. The neoliberal economic policies that, for decades have reduced national and state governance to promotion of commercial, rather than public interests, explicitly support inadequate oversight and corporate impunity for negative public health outcomes such as the opioid crisis. State and local units of government damaged by the opioid epidemic can only resort to the courts for financial remedies — civil damages because political remedies have been taken off the table.

While in no way defending bit pharma, the dominant public narrative that points the finger at industry begs the following questions: where was the appropriate government oversight of the pharmaceutical industry, and why aren’t towns, cities, states and affected families holding elected representatives accountable for the oversight failure? After all, as everyone knows, the logic of capitalism and private industry is to make profits; the logic of democratic, representative government is to protect the “public weal” or welfare.

Political theory throughout the ages has taught that he public welfare is protected by the social contract, or the general will, expressed through legislation and the political process of representative government. The social contract ensures the safety and wellbeing of the polity – the citizen body. Increasing privatisation of government and healthcare, both now internally colonized by corporate interests, undermines that public purpose and replaces it with private sector interests. While they can hold those interests financially accountable through the imposition of civil penalties, the courts courts can’t make up for the political deficit. Only the electorate can empower itself by selecting political representatives who will protect their interests and fulfill their part of the social contract.

Doing so entails developing a conception of citizenship that is more inclusive and robust than the version upheld in the dominant narrative, which reduces the citizen to consumer, client, or customer. Providing resources to support people who use drugs non-medically, as well as vulnerable persons who need opioids for the relief of serious health related suffering, should be a political choice for a public budget based on rationally determined tax income, not the prosecution of civil lawsuits that will impose fines on corporate profits. Privatized healthcare in the context of a systematically shrunken public sector will inevitably produce crises such as the epidemic of non-medical opioid use. The US has become a “fragile state” in the realm of public health, largely because of government capture by the private sector. The victims of the opioid epidemic are “collateral damage” to use a military metaphor, or a “negative externality” to use an economic term.

The really interesting academic research on the opioid epidemic being published now interrogates the relationship between social capital, or civic trust, and public health damage from non-medical use of pharmaceutical opioids, both legal and illegal. Germany is the important counter-example to the US, the exception that proves the rule. Opioid prescription has increased sharply in Germany in recent years, just as it has in the US, but addiction and overdose rates in Germany have fallen. Levels of civic trust are high in Germany, which still provides its population with universal health coverage that includes harm reduction and palliative care. The German healthcare system itself is based on a Bismarkian notion of solidarity that is alien to the US, and is a protective factor in the amount of damage that can be done by the pursuit of private profit. There are also important socio-economic associations between non-medical opioid use and overdose in the US. The opioid crisis has not hit all states equally; it is not universal, as it would be if the substances alone were to blame, but is co-extensive with areas with low levels of civic trust and solidarity.

Countries that fear contagion from the US overdose epidemic should implement policies that support health system strengthening and universal coverage that includes harm reduction and palliative care, rather than simply restricting rational access to opioids for medical purposes. They should ensure that “affected populations” of patients, families, providers, and people who use drugs, are included in policy planning, implementation, and evaluation. And they should ensure that the system promotes political accountability rather than impunity, such as that currently enjoyed by US politicians. This will build the civic trust and social capital that undergird the public good.


[1] Heyman, G. M., McVicar, N., & Brownell, H. (2019). Evidence that social-economic factors play an important role in drug overdose deaths. International Journal of Drug Policy.

Perverse incentives: how the J&J verdict could harm palliative care patients

The USD 572 million verdict against Johnson and Johnson this week, resulting from a “public nuisance” suit brought by the state of Oklahoma charging the company with responsibility for the opioid crisis, raises concerns about how this and similar verdicts will harm the rights of patients to prescribed analgesics for legitimate medical use. Apparently the Sackler family, owners of Purdue Pharmaceuticals, are negotiating billion dollar settlements with various cities and states as this goes to press. While these enormous damage awards, which will bankrupt some companies, might help the cities recover public resources spent on epidemic, they will likely harm patients who need these essential analgesics for severe pain, leaving them without prescribers, pharmacists, or the necessary meds. This is already the case for patients in more than 75% of the world, who desperately need opioids for the control of severe pain! Will that number go north to 100% if pharmaceutical companies in the US simply stop producing essential opioids? These analgesics are on the WHO Model List of Essential Medicines for Palliative Care, and access is now widely considered a human right. A whole host of human rights violations could be the unintended consequence of these lawsuits!

To add insult to injury, it is unlikely that the civil suits and monetary awards, however well intentioned, will end the epidemic of non-medical use of opioids. People with dependence issues will simply go to the streets if they can’t get what they need at the pharmacy. The verdicts and settlements are an example of what one historian of the drug war calls imperfect coercion, which only exacerbate the underlying problem. Monetary awards resulting from civil verdicts or out of court settlements that bankrupt the legal industry create supply vacuums that provide incentives for drug cartels to hawk their very profitable lethal wares on the black and grey markets.

One reason that cities, towns and states are forced to prosecute the pharmaceutical companies under (civil) nuisance laws for widespread non-medical use of opioids among the population, is that the Federal Drug Enforcement Administration cannot charge the pharmaceutical companies with criminal conduct. The pharmaceutical companies are not technically cartels or “drug dealers.” They manufacture products approved by the Food and Drug Administration, another federal agency. These drugs are legal. They are only supposed to be dispensed and consumed for legitimate medical purposes by patients. The fact that this legitimate purpose spun out of control, and the products were used illegally (because the profits on improperly marketed opioids were simply too high for so many players to resist) is a governance failure that should be remedied through targeted policy solutions.

Moreover, because the FDA can criminally prosecute the pharmacies and physicians who prescribe and dispense the medicines, and describes them as “drug dealers,” many doctors who prescribe rationally, rather than criminally, will be deterred from entering or staying in what has not become a professional minefield. Even though the pharmaceutical companies can escape federal prosecution and incarceration, the physicians and their distributors take the fall and do the time. This makes doctors who do treat pain appropriately with opioids much more likely to think twice about ever prescribing them again, leaving patients with no relief at all.

The public health issue of the “US opioid crisis/overdose epidemic” represents a perfect storm of ideology, governance deficits, big money politics, and socio-economic deprivation, among other factors. Effective policies to dismantle the crisis without creating further harm will entail an equally multi-faceted, fine grained, political and ethical approach to policies around the regulation of controlled substances and internationally controlled essential medicines for the treatment of pain and palliative care.

If you can’t beat em, join em! Since DEA can’t bring criminal prosecutions against the pharmaceutical companies in federal court for failing to comply with their obligation to red flag the suspicious opioid orders that led to the epidemic, many DEA operatives are leaving the agency to work for the industry and consult on the opioid lawsuits! Alice Through the Looking Glass days!

A call to action. In order to prevent further harm to patients who need opioid medicines now, and those who will need them in the future, providers who use opioids as part of their legitimate practice will have to to work with the FDA, the DEA, and the judiciary, industry, as well as with the towns, states, and cities that will receive these cash awards, to ensure that sufficient product is manufactured and distributed to licensed professionals to meet legitimate medical needs. This sort of balanced policy has always been the goal of the international drug control system, but is one that has rarely been nurtured and supported by regional, national, and local law. Perhaps this crisis will provide an opportunity to devise a system that works for the benefit of all. May it be so.

Universal Health Coverage: palliative care’s brass ring

To go for the brass ring (def) “to try to succeed in an area where there is a lot of competition” (Collins English Dictionary) The term comes from the practice of giving a free ride to the person who succeeded in picking a ring out of a box while riding a merry-go-round. [Slang; late 1800s]

Why grab the brass ring?

Universal Health Coverage, or UHC, has to do with money, both public and private, and what health services that money covers. Ideally, these services are to be universal, meaning all inhabitants of a country are entitled to them. It is debatable whether publicly funded palliative care is universally available in any country. What palliative care provision there is around the world is randomly and precariously funded by charities, faith based organisations, and private individuals, and is far from being universally available. This unsustainable “coverage” situation cannot meet the growing public health needs of aging populations suffering from both communicable and non-communicable diseases, including chronic conditions such as dementia. Palliative care is now a rapidly developing clinical discipline. It is unethical for governments to delegate its provision to the charitable or private sector.

The vision inscribed in the WHO definition of UHC is that “all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.” An opportunity to develop and promote this vision is coming in September, when the United Nations will convene a “High Level Meeting” on Universal Health Coverage in New York. Heads of State who attend, or their official representatives, will adopt a consensus political declaration that reflects their policy commitments regarding coverage plans. Negotiations on the text may be ongoing until September.

The latest draft text of the political declaration (at the time of writing) includes two references to palliative care, one of which flags the need to develop services for older persons with chronic conditions. Although this double inclusion represents rhetorical progress at the multilateral (UN) level, the challenge is to join up the dots at the regional and national levels. National palliative care associations will be key players here once the political declaration is adopted with this consensus language. This will provide an opportunity (the “brass ring”) for governments and WHO country offices to familiarise themselves with service providers on the ground, and to enlist their collaboration in the drafting and implementation of comprehensive national plans. The stakes of grabbing that brass ring are very high — for palliative care patients, their families, providers, and healthcare systems themselves. Without UHC, and without integrated palliative care, the “curative” services patients currently “use” at their own expense in most countries, expose them and their families to serious financial hardship. What preventive and promotive services do exist fail to protect households from the financial hardship associated with futile “curative” treatments when these come “too late.” Palliative care can avert some of that hardship that by convening honest conversations about goals of care, from the beside to the health system. Without it, medical professionals are railroaded into “doing everything” and households are driven deeper into the “health poverty trap.” This is why achieving UHC is included in Target 3.8 of the 2030 Agenda for Sustainable Development.

UHC 2030

One problem with the wording of WHO’s definition of UHC is that it addresses only health system users. The vast majority of the world’s people with serious health problems are not health system “users” and have no access to preventive or curative services, let alone palliative care. The UHC political declaration under negotiation must include a commitment to provide accessible basic services to the currently invisible populations experiencing serious health related suffering in unserved locations. Palliative care advocates can identify these invisible populations and consult with governments to establish appropriate, publicly funded services.

The recent Chatham House (CH) briefing “Closing the global access abyss in palliative care and pain relief – A top priority in achieving Universal Health Coverage” was convened to analyse the abyss and discuss how to promote palliative care as an essential service of UHC. Participants agreed on the indivisibility of the spectrum, which ideally should prevent and treat much of the suffering palliative care practitioners now address and accompany when “nothing more can be done.” This is an ethically unacceptable state of affairs from a systems perspective.

Again, ideally, palliative care should fill the key health needs of populations whose mortality is no longer preventable or treatable in a public health system that meets basic needs. Appropriately addressing the needs of this population will liberate sections of the healthcare system that are currently jammed up with futile procedures, rescue medicine, and communications that sell false hopes for a cure. According to one researcher at the Chatham House meeting, doctors and administrators need to understand how palliative care can help them do their jobs as cardiologists, GPs, etc. Those who see palliative care as a rival for scarce professional recognition and resources act as a barrier to palliative care development.  

Ms Claire Morris, Advocacy Manager for the Worldwide Hospice Palliative Care Alliance discussing UHC with Dr. Jane Bates, a palliative care physician who works in Malawi, and Ms. Lilatoul Ferdous, RN. Palliative Care Society of Bangladesh.

Indeed, one senior palliative care physician at the CH meeting identified the medical profession itself as both a cause and accomplice to suffering: “We need to start discussing the fact that doctors don’t feel it is their job to relieve suffering.” The profession is an accomplice to serious financial and existential suffering when it engages in therapeutic obstinacy. Palliative care providers often get patients and families who have been battered by the healthcare system already and have lost their only source of income and stability. Serious illness doesn’t subtract only one family member from the economy, it also subtracts at least one caregiver, who is either a wage earner, grandparent or a student who has to drop out of school. Establishing community level palliative care supports households and local economies, the basis of sustainable development.

Meeting process: the meeting was legitimated by inclusion of service users (“affected populations”) from the UK and Uganda, patients whose lives have been improved and extended by palliative care, including appropriate use of opioid analgesics. All had received palliative care for serious health related suffering, including for HIV/AIDS, cancer, and rare genetic conditions. They demanded patient involvement in all stages of the advocacy, policy development and implementation processes. All who spoke at the meeting, both live and through video link, emphasized the fact that, without palliative care they either would be dead, or better off dead. They discussed how palliative care’s support for their participation in family and public life has converted them into policy evangelists. See here and here for outstanding examples of service user advocacy.

Palliative care service providers from resource challenged settings in India, Kenya, and a Rohingya refugee camp in Bangladesh testified after the service users. The refugee camp workers contrasted the generosity of private donors and tenacity of frontline providers with the support vacuum of governmental and inter-governmental agencies. This unsustainable situation is a microcosm of the challenges facing all societies experiencing ever greater burdens of chronic and non-communicable, as well as communicable diseases. Grabbing the brass ring entails persuading governments to provide public funding, require palliative care education, ensure adequate access to controlled medicines, and partner with providers already working in the field.

The global palliative care community can show member states the way forward through our own internal collaborations, practice, and ethos. We can model the way by including affected communities – patients, families, volunteers, and caregivers —  as equal partners alongside clinical and policy professionals. The challenge is to give authentic “voice” ad-voc to those who receive and provide services. The Chatham House meeting was a terrific example of this inclusionary ethos. Patients and practitioners had the floor first, upending the usual protocols. The WHO DDG was called on to respond to them, rather than vice-versa.

Content

On the CH briefing table were the topics of funding, leadership, and the ongoing challenge of addressing inequitable global access to opioid analgesics, especially in the fraught context of the WHO withdrawal of two key guidelines on balanced policy and prescribing. Speakers expressed frustration that the opioid crisis in the north was overshadowing and negatively affecting the opioid access crisis in the global south. Leading providers of palliative care in both India and Uganda, who have successfully fought for improved availability of oral morphine in their facilities, have testified to the fact that the oral morphine they have provided to tens of thousands of patients over the years is not diverted and abused in their institutions. In qualified hands, generic oral morphine has life-giving, and life-saving value. This provider testimony to non-diversion confirms the finding of the 2019 World Drug Report, which states that the vast majority of morphine seized by law enforcement authorities was illicitly manufactured, not diverted from the pharmaceutical supply chain. Once again, it is key to include the voices of patients and providers discussing their experience of safe morphine use for severe pain and breathlessness.

Funding Without philanthropic funding, hospices around the world are going under and reducing their capacity to serve patients. As the Chair of the Lancet Commission on the Value of Death, referring to the charity shops that underwrite most British hospices, said “No one would dream of funding cardiology and osteopathy by selling old clothes, so why are doing it with hospice and palliative care?”[1] Dr. Anne Merriman, founder of Hospice Africa Uganda (HAU) the beacon of palliative care and morphine availability in Africa, was on late night BBC TV recently begging for a billionaire because HAU’s charitable funding has dried up, and the government has not stepped forward to pay the tab. Since Uganda, like many “developing” countries, sends its elites abroad for treatment at public expense, few policymakers are viscerally aware of the situation in government clinics and hospitals. Universal Health Coverage, properly initiated and established, and including the voices of both providers and patients, should fill the identified palliative care service gaps in all countries. This requires governments to engage with national palliative care associations whose members are already doing the work. Representatives of those associations will have to make the first move and grab the brass ring!

The absence of any participants from either the UK government, specifically DFID, or the UK Hospice movement troubled participants at the CH meeting, who identified the UK as the “birthplace” of the global hospice/palliative care movement and a potentially global leader for publicly funded palliative care. The philanthropically funded aid pot is shrinking and the responsibility for sustainability lies fair and square with national governments to design, fund, and implement UHC policies for populations that use, and do not yet use services. It’s up to palliative care patients, professional associations and policy advocates to help their governments grab the brass ring of UHC by convincing them a) that it’s doable, and b) that the social and financial returns on investment will far outweigh the initial costs of health system strengthening and workforce training.


[1] He agreed to be quoted for this piece.

A Teachable Moment? The World Health Organisation’s Decision to Discontinue the “Ensuring Balance” and the Pediatric Pain Guidelines

The still fragile health rights of pain and palliative care patients around the world are under siege yet again following a decision by WHO to withdraw two key guidelines at the request of the authors of a misleading US Congress report entitled “Corrupting Influence: Purdue and the WHO.” The report falsely alleges that experts and organisations tainted by industry money influenced the content of the 2011 and 2012 guidelines, Ensuring Balance in National Policies on Controlled Substances: Guidance for availability and accessibility of controlled medicines, and WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. The international palliative care movement has responded to the WHO’s withdrawal of the guidelines with a globally endorsed, evidence-based Joint Position Statement.

The two poles of this now global uproar are the North American “epidemic” of non-medical use of opioids, and the worldwide abyss in access to opioids for legitimate medical use. The aim of the two (now withdrawn) WHO guidelines, which have been translated into multiple languages, was to provide governments and health systems with the clinical and policy tools to remedy this abyss. They served this purpose well for almost a decade. Yet Corrupting Influence depicts the organisations and individual experts who contributed to them as lackeys of Purdue Pharma. WHO’s abrupt withdrawal of the two guidelines at the request of the authors of the US report implicitly condones its slanderous allegations, discredits the experts, and leaves a policy vacuum that will harm patients of all ages for years to come.

The Corrupting Influence authors seem to have missed the fact the now withdrawn guidelines recommend essential controlled medicines on the WHO model list, and their “drug of choice” for pain treatment is generic morphine in all its preparations: oral, injectable, tablets, etc., not designer opioids such as Purdue’s Oxycontin. Recommending that governments improve the availability of generic morphine directly undermined Purdue’s marketing strategy for “oxy.” It is a matter of public record that Purdue Pharma wanted to brand Oxycontin as completely distinct from morphine. They didn’t even want it associated with cancer pain!

Purdue CEO George Sackler said morphine was viewed only as an “end of life” drug that was frightening to people [… and that the company] didn’t want OxyContin “to be polluted by all of the bad associations that patients and healthcare givers had with morphine.” Purdue took advantage of the vacuum of palliative care and pain education in US medical schools, as well as the palliative care stigma attached to morphine, to market Oxycontin in the North American market by falsely claiming it was a weaker and “less addictive” medication for chronic pain patients.

The public health policy goal of reducing harmful non-medical use of opioids by denying legitimate medical access to patients is doomed to fail on all counts, simply because the supply chains and demographics of the two markets are distinct. The “licit” global market in pharmaceutical opioids imperfectly meets the global need for legitimate medical use; the thriving black and gray markets perfectly meet the escalating demand for non-medical use. Traffickers, by definition, obey the demand of the illicit market, not the public health laws of the land.

Unlike “oxy,” the morphine circulating through the legal pharmaceutical supply chain tends not to be diverted and misused. The 2019 World Drug Report states clearly that the majority of illicit morphine seized by drug control authorities had been illicitly produced.

Recommendations

WHO knows better than to subscribe to the politicised mainstream narrative that demonises all opioids. Its own “Roadmap” to improve access to essential medicines acknowledges the global crisis of untreated pain. The Secretariat should be taking an evidence-based approach, defending its guidelines and experts, and rebranding generic morphine as its “gold standard” medicine for the treatment of moderate to severe pain. Prescribed by appropriately trained practitioners, morphine is a medication that improves both quality of life and end of life, depending on the needs of the patient (palliative care, post-op, etc). By withdrawing the two cornerstone guidance documents, both of which promote generic oral morphine for relief of severe pain and dyspnea, WHO inadvertently played into the hands of industry and traded off the rights of one group of patients for another.

If, in retrospect, the ten year old Ensuring Balance guidelines can be faulted for anything, it is their failure to explicitly de-stigmatise morphine and emphasise the need to increase legitimate supply and demand in the context of strengthened health systems, coordinated pharmaceutical supply chains, and mandatory palliative care education. This textual shortcoming is easily remedied by a team of appropriately vetted experts.

I recommend that such future fiascos be avoided by requiring all WHO staff and all US Congresspersons to take a brief basic course (no more than one hour with pre- and post- tests) regarding the global state of play regarding palliative care, essential medicines, and human rights provisions that apply to health law. This is a teachable moment.

Strange (but passionate) bedfellows: palliative care and drug policy

Bedfellows: Sp. compañeros de cama; Fr. un drôle de tandem. A similar term is odd couple, a pair who share either housing or a business but are very different in most ways.Palliative care advocates, many of whom are seasoned practitioners, and drug policy diplomats make strange bedfellows indeed. The misery that brings them together is the preventable suffering of patients in more than 75% of the world who lack access to essential medicines that are listed in the schedules of the international drug control conventions.

Why? Because international drug control law left these medicines in a legal and policy limbo. Palliative care advocates and practitioners have been working to extract their essential medicines from this legal limbo by raising their visibility in the global, regional, and national drug policy arenas. Although some progress has been made, emphasis on public health harms of the non-medical use of drugs in some regions once again threatens to overshadow our emphasis on the public health harms of the global epidemic of untreated pain.

The Single Convention on Narcotic Drugs, drafted and ratified in the 1960s, before the development of modern palliative care, explicitly instructs all governments to promulgate public health regulations that prevent “diversion and misuse” of essential medications containing controlled substances (aka drugs). This is important. Catastrophically however, the Convention fails to explicitly instruct all governments to promulgate regulations that ensure adequate access to those same medicines. This legal limbo left a policy vacuum that persists and is worsening now, generating untold preventable suffering for millions of palliative care patients worldwide.

David Plunkert, NYT 2/12/16

Governments did as the Convention told them: they prevented the hypothetical diversion and abuse by putting controlled medicines in a regulatory chokeholds and depressing demand (by not developing palliative care). There is evidence now , though, that the vast majority of morphine seized in the “illicit market” has not been diverted from the medical supply chain. Licit medical morphine simply is not a valuable commodity, so is not marketed or promoted by pharmaceutical companies. This is a policy issue because governments must make a political decision to subsidise the production, distribution, and consumption of affordable controlled essential medicines. Leaving them to the market creates distortions and negative externalities such as the global crisis of untreated pain.

Hence the strange bedfellows: palliative care practitioners must step carefully into this legal marriage bed and dismantle the wall built around access to the medicines, many of which, including generic oral morphine, are essential palliative care medicines on the WHO Model List.

IAHPC advocacy in the drug policy arena

In its mission to “serve as a global platform to inspire, inform, influence, and empower individuals, governments and organizations to increase access and optimize the practice of palliative care,” IAHPC advocates for balanced drug policies that maximise public health outcomes. These prevent diversion and misuse of palliative care medicines through strengthened health systems and workforce training, not through supply control alone. It has taken a couple of decades of practice to fine tune policy formulae that can be adapted to local contexts, but palliative care experts now know how to help governments with sufficient political will to at least begin the exercise. A handful of UN member states and localities are moving towards balance, both ensuring patients have legitimate access and avoiding a fatal “epidemic” of non-medical use.

The other opioid crisis. All organisations within the UN system are responding to the North American “opioid epidemic” of non-medical use, the tragic outcome of unbalanced drug policies. This response, unfortunately, is threatening the health rights of pain and palliative care patients around the world, trading off the rights of one vulnerable population for another. The international palliative care movement has responded to the WHO discontinuation of guidance documents with a globally endorsed, evidence-based Joint Position Statement. The statement requests that committees of local and global experts, including patients and families, convened according to standard WHO policies and procedures, update and reinstate the discontinued guidances as soon as possible to avoid further harm.

Once the updated WHO guidances are published, member states and/or philanthropic funders will be needed to help palliative care providers work with governments to repair the damage created by this latest challenge to the rights of patients. Governments will need both technical and normative guidance to improve affordable opioid availability for medical purposes, particularly the availability of immediate release generic oral morphine, and to expand palliative care beyond the private, charitable, philanthropic domain to the publicly financed health and social welfare domains. As palliative care is now included in both the spectrum of Primary Healthcare and Universal Health Coverage, it is WHO’s obligation to ensure that evidence based guidelines on controlled medicines for patients of all ages are available to member states.

Target 3.8 of the 2030 Agenda for Sustainable Development requires governments to develop Universal Health Coverage, which includes palliative care as an essential service. The clock is ticking for member states wishing to make good on their commitment to ‘leave no one behind. They will leave ‘affected populations’ behind, though, unless professional and patient associations hold them accountable. ‘Leaving no one behind’ means considering the needs of all patients whose illnesses can no longer be ‘prevented or controlled.’ Achieving SDG Target 3.8 means that clinical vocabulary will have to replace the dreadful words ‘there’s no more we can do,’ with assurances that palliative care is in place to relieve their serious health related suffering.

Leaving no one behind is the political version of the clinical ethic of “non-abandonment.” Non abandonment in the political realm entails evidence informed and passionate advocacy — within the drug policy system itself. Well informed and organized associations of patients, family members and caregivers can teach drug policy diplomats about palliative care. Strange bedfellows indeed and there’s a lot of kissing and making up to do before all UN member states have adequate access to controlled medicines!