Patient militancy — palliative care advocacy more crucial than ever!

Palliative care advocates have been exasperated by several recent UN entity meetings, including the 74th World Health Assembly taking place at the moment worldwide on a virtual platform. Our global organizations have been sidelined or ignored by UN member states obsessed with funding agendas that reduce “preventable mortality” and stimulate economies. Mortality that cannot be prevented, or services that might not immediately stimulate the economy are not worthy of notice. Palliative care has been lost in the national, global, and regional policy shuffles.

One thing I have learned over the years of doing this is that palliative care advocates must have a lot of resilience because we meet with so much indifference or ignorance about our cause from member states and often from other global health NGOs. Advocacy is one way of raising awareness about the benefits of palliative care, clearing up misconceptions: “it is only for cancer, only for end of life, and equivalent to euthanasia” and educating policymakers about the benefits of integrating palliative care into health systems. Our advocacy has been exceptionally critical during the pandemic, which has revealed that palliative care and leadership skills are just as crucial as diagnostics, vaccines, and therapeutics in any sustainable pandemic response. But the funders for our advocacy and the member states are MIA.

The general indifference to the palliative care message on the part of the medical profession, member states, academia, and other NGOs is a shame, because it means that these key actors are ignoring a critical pool of public health expertise. Their indifference reflects not only willful ignorance but unwillingness to deal with a topic (mis)identified with suffering, rather than alleviation of suffering, quality of life, and in a word, joy.

Pablo Picasso “Joy of Life”

Palliative care advocates need resilience and a source of strength to keep us going with a good attitude, always ready to pick ourselves up, dust ourselves off, and start again. Failure is not an option, because we represent patients and their caregivers with serious health related suffering. This will never go away as long as we are mortal so our job is not done until all patients and families who need it in the world receive basic palliative care attention.

A kind of patient — etymologically related to ‘passio‘ or ‘suffering — militancy, is essential. Our inspiration as palliative care policy advocates comes from our palliative care providers, from their passion and commitment. Their passion in turn comes from their patients, whose vulnerability, from neonates to frail elders, paradoxically activates a vital circuit of truth telling (parrhesia) that health systems ignore at their peril.

Palliative care providers and service recipients, when multilateral organizations and governments give them the floor at their meetings, are great advocates for this insurgent holistic practice. Physicians, nurses, social works, chaplains and other IDT members provide the authenticity and authority needed for effective advocacy while policy wonks such as myself navigate the governance structures to get them a hearing. Palliative care patients and providers, whose existential vulnerability to suffering is a condition of their effectiveness, are legitimate spokespeople for a practice that enhances, and does not just quantify, each and every unique life.

Civil society organizations are essential consultants of UN member states, which is why we are granted “consultative status” with the Economic and Social Council and recognized as “non-state actors” in official relations with the World Health Organization. Our participation in multilateral meetings is now more essential than ever, and we must join negotiations for the proposed global framework convention on pandemic preparedness and response, to be discussed at a UN General Assembly Special Session (UNGASS) in November.

Loaves and Fishes — a parable for palliative care advocacy

Palliative care advocacy is challenging at the best of times — policymakers simply don’t want to think about the expense of caring for people with chronic and terminal illnesses. These constituents don’t contribute to the bottom line, and they don’t or soon won’t, vote. In the worst of times — the pandemic — advocacy is doubly challenging as all eyes are fixed on saving lives, the quintessential ‘rescue medicine.’ And so many people don’t even know what palliative care is: a recent survey revealed that more than 7o% of older Americans remain in the dark about it. There is a movement to rename it. Since most politicians and foreign office functionaries (the diplomats who negotiate UN resolutions) don’t know what it is, our advocacy must always begin with education — a synthesis of evidence and stories designed to compel, persuade, entreat, and so on!

Jesus’ feeding of the five thousand — today’s gospel — encourages me. He takes the little that was offered — five loaves and two fishes — in the context of great unmet need (such as the global need for palliative care) and exponentially increases it to the extent of overflow. Twelve wicker baskets full.

We can do the same in our advocacy: give everything we have, even if it seems pathetic and inadequate in the context of overwhelming suffering. Over and over again without expecting results. For some this is the definition of insanity, for others the payoff is enormous. At some point, maybe not in our lifetimes, the fruits of our labor will become apparent. Others will taste those fruits, that bread and fish! and the joy that has room to grow when their suffering is relieved by well trained palliative care teams equipped with appropriate medications, will reach to the ends of the earth. May it be so.