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.

Humane Prison Hospice Project Marks Mandela Day, July 18, 2020, for Prisoners Facing the COVID-19 Pandemic in Solitary Confinement

FIVE YEARS AGO, the United Nations General Assembly decided to extend the scope of Nelson Mandela International Day, observed each year on 18 July, to promote humane conditions of imprisonment. The UN adopted the revised Standard Minimum Rules for the Treatment of Prisoners, and approved the name “Nelson Mandela Rules” in order to honor the legacy of the late President of South Africa, who spent 27 years in prison and is known for championing global human rights, equality, democracy and the promotion of a culture of peace’.

The ‘Nelson Mandela Rules,’ stipulate that “prisoners should enjoy the same standards of health care that are available in the community; and in cases where prisoners are suspected of having contagious diseases [particular attention shall be paid to] providing for the clinical isolation and adequate treatment of those prisoners during the infectious period.” Rule 43 states that “In no circumstances may restrictions or disciplinary sanctions amount to torture or other cruel, inhuman or degrading treatment or punishment. The following practices, in particular, shall be prohibited: (a) Indefinite solitary confinement; (b) Prolonged solitary confinement.” Many incarcerated persons in California are now subject to both these outlawed practices.

The Humane Prison Hospice Project, a Bay Area civil society organization co-founded by Ladybird Morgan, Sandra Fish, and former prisoner Marvin Mutch, to implement end of life care in prisons by supporting and training prisoners to be the caregivers, is appalled by the fact that more than 5000 incarcerated persons in California’s prisons have contracted the disease thus far, an infection rate of about 40 per 1,000 and rising — more than seven times higher than the infection rate for the state’s general population as a whole. 730 of California’s prison staffers have tested positive as well, with at least two having died from the infection. As of this writing, thirty-six California prisoners have died in chains and without palliative care.

Humane Prison Hospice Board Member Dr Katherine Pettus said “I received a letter today from my son Pablo who is incarcerated at San Quentin for a drug related offense; three weeks ago, my son and hundreds of other San Quentin prisoners tested positive for Covid-19. Pablo is now being held in a state of indefinite solitary confinement at San Quentin and wrote “this is making history as my friend in the cell next door has been saying. We don’t even get [exercise] yard. I can’t go out and get some fresh air and sunshine.  P.S. My neighbor says over ten people have died in the prison from COVID-19.””

California can and must do better. Although the US doesn’t appear to value international law, the Humane Prison Hospice Project urges Governor Newsom, California mayors, and prison wardens to adhere to international human rights standards such as the Mandela Rules.