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.
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.
Pope Francis tells readers of his new book Let us Dream, to allow suffering to transform us, to let ourselves be touched by others’ pain. Only thus can we be effective change agents for the post COVID world. Certainly, there is more than enough suffering to go around at the moment. It overflows, to use another Francisism, creating previously unthought of possibilities that can be discerned through dialogue, solidarity, and political action. But since few of us allow ourselves to be touched by suffering, as doing so inevitably changes things, changes us, and most of us are change averse, how can this happen? Francis tells us to see, judge, and act.
Seeing, witnessing the suffering in nursing homes, both that of the staff and the patients, should be enough to transform the coldest heart—the heart of stone – to a heart of flesh. In Canada, nursing home deaths account for 80% of the total deaths from COVID-19, and in California, where I live at the moment, they are a strong runner up at almost 50%, over one hundred per day at the end of 2020. As of December, 2020, COVID had killed over 106,000 residents and staff of US privately owned, but publicly-funded, long term care facilities. Staff shortages and lack of PPE, both of which reflect lack of investment in the public health infrastructure, are two factors driving the high death rates. And death rates are significantly higher at “for-profit” nursing homes than their non-profit counterparts, despite the fact that both receive public funds for patient care, and are heavily regulated.
Seeing reveals that this public expenditure and ineffective oversight are rooted in institutionalized ageism, a cultural gaze as pernicious and lethal as racism, sexism, and all the other isms that relegate our fellow human beings to the existential margins, the spaces that in Pope Francis’ analysis, will drive the post-COVID, crisis-induced transformation. The suffering of nursing home patients, their families, and the underpaid staff, in other words, has agency. It can ground a “universal solidarity of the living and the dead guided by the memory of suffering and the practical struggle for emancipation.” This political theology of Johann Baptist Metz, a German theologian of the Shoah, calls for “a mysticism of open eyes,” that is, eyes trained to see the face of God in the fleshly faces of those in pain or need.”
Judging, reflected in reports such as those published by Amnesty International that describe the COVID-related suffering in nursing homes as violations of the rights to health and non-discrimination, follows this type of seeing. I judge that the rights to be free from torture, neglect, and cruel and inhumane treatment should also be stipulated. These human rights violations are acts of omission, rather than commission: they are a failure to protect that is rooted in ageism. Combined with the regulatory failures that preceded the COVID crisis, they turned nursing homes, ostensibly places of safety and care, into charnel houses. Such judgments raise the spectre of prosecutions for gross negligence and involuntary manslaughter, but who are the defendants in such cases given that nursing homes are mired in webs of bureaucracy? As Hannah Arendt noted,
In a fully developed bureaucracy, there is nobody left with whom one could argue, to whom one could present grievances, on whom the pressures of power could be exerted. […] for the rule by Nobody is not no-rule, and where all are equally powerless we have a tyranny without a tyrant. (Arendt, 1970)
Action. So how to act once we have seen and judged: once we have allowed the suffering to touch and transform us? Pope Francis, unlike Metz and Arendt, is practical rather than theoretical, calling for transformation and intergenerational solidarity to overcome the ageism that allows both younger and older persons to be (respectively) rootless and abandoned, a situation that renders society ‘sterile’. He suggests community-wide Political movements (with a ‘capital P’ in his words) that organize to to identify and befriend the lonely and abandoned among us, and he wants to ensure that care homes “are as much like families as possible, well-funded and embedded in the community.” (Francis, 2020) But the ‘well-funded’ part calls on not just us, but policymakers who oversee budgets to also be transformed by suffering, which once again entails confronting the deep-rooted ageism that disdains elders as unproductive, ineffective, and a waste of public resources. How is this to be done? Policymakers are famously self-interested, always having an eye on the bottom line and the next election.
A counterintuitive answer exists in the new science of compassion, which is generating evidence showing that operationalizing compassion can strengthen health systems and be an antidote for the burnout health care providers everywhere are experiencing. Scientists define compassion as an emotional response to another’s pain or suffering, involving an authentic desire to help, and insist that it must always be combined with clinical excellence to produce optimal results. Acting with compassion doesn’t reduce us to boundaryless, ineffective blobs, as the old narrative might have it, but just the opposite! It increases resilience and will be the jet fuel to help health systems build back better.
Knowing this, we can encourage policymakers to allow suffering to change them. We do so confident, and in solidarity, with the communities in which we stand. I stand with the palliative care community, a global tribe of interdisciplinary teams and networks dedicated to the vision of a world free of health-related suffering. We allow suffering to transform us into advocates, caregivers, administrators, volunteers, clinicians, and chaplains. The suffering now taking place at the peripheries – in the COVID infected nursing homes – can also transform the policy world once it is given voice through advocacy. Clinicians, administrators, and policymakers own self interest can be the point of entry for arguments that compassionomics is more cost effective than wasteful, profit-centered careerism.
The toxic cocktail of COVID and institutionalized ageism brought about the unthinkable in the professional care sector of “developed” countries. Hundreds of thousands of older persons died in entirely preventable suffering, and many more are still living a sort of ‘civil death,’ perishing of loneliness, isolated from their nearest and dearest, for ‘their own good’ and the good of the wider society. Nursing home residents are not inherently vulnerable, as the dominant narrative would have it — they are underserved — a political category. They are disfavored. Their suffering is not a ‘tragedy’; it is a crime. It is beyond shameful, and as a society, we must say ‘never again’ just as we did to the Shoah.
2021 must witness our common commitment to an intergenerational culture of solidarity — yes even with the dead — that allows their suffering to change us, and that values the lives of those who are older, differently abled, impoverished and incarcerated just as much as it scrambles to save the lives of those who are younger and members of privileged elites. Otherwise, there’s just no way we can think of ourselves ‘civilized.’
Written for Elder Abuse Awareness Day, June 15 2021 in honor of all those who died in care homes worldwide during the pandemic.
The Inter-American Convention on the Rights of Older Persons defines elder abuse as “a single or repeated act or omission to the detriment of an older person that harms their physical, mental, or moral integrity and infringes the enjoyment or exercise of their human rights and fundamental freedoms, regardless of whether or not it occurs in a relationship of trust.”
“Failure to integrate palliative care into health systems, including into long term care, constitutes elder abuse as an act of omission.”
The world has marked Elder Abuse Awareness Day on June 15 every year ever since the International Network for the Prevention of Elder Abuse (INPEA) began the tradition in 2006, persuading the UN General Assembly to adopt an official resolution of recognition in 2011. A decade later, in 2021, we must shout from the rooftops that what happened to older adults during the pandemic, particularly those living in care homes in high income countries, was elder abuse. Both a Deputy Director of the WHO and a highly placed Vatican official went further, calling it “the massacre of the elderly.”
In hindsight we know that, underlying the appalling death rates in care homes, particularly in Canada, Belgium, Spain, Sweden, and the US, is a tangle of causes and conditions, all nourished in the soil of toxic social ageism. Palliative care, along with prevention and treatment, would have mitigated, if not alleviated a great deal of the suffering of older persons and their loved ones during the pandemic.
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It • Aims to improve the quality of life of patients, their families and their caregivers. • Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process. • Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement.
Former UN Independent Expert on older persons Ms. Rosa Kornfeld-Matte said in 2015 that “States should ensure the availability and accessibility of palliative care for all older persons in need, particularly those who suffer from a life- threatening or life-limiting illness. Training, and adequate and affordable medication and therapeutic measures, should be provided in public and private care settings.” Never has this been more relevant than now, as UN member states prepare for a UN Special Assembly on COVID in November.
Obligations to Respect, Protect, and Fulfill
By becoming parties to international treaties, States assume obligations and duties under international law to respect, to protect and to fulfil human rights. The obligation to respect means that States must refrain from interfering with or curtailing the enjoyment of human rights. The obligation to protect requires States to protect individuals and groups against human rights abuses. The obligation to fulfill means that States must take positive action to facilitate the enjoyment of basic human rights. States clearly failed to meet their obligations to protect and fulfill the rights of older persons during the pandemic by neglecting to integrate palliative care into their health systems.
Moreover, as many of the aged care homes where multiple deaths occurred were businesses, UN Guiding Principle 1 is applicable “States must protect against human rights abuse within their territory and/or jurisdiction by third parties, including business enterprises. This requires taking appropriate steps to prevent, investigate, punish and redress such abuse through effective policies, legislation, regulations and adjudication.” (emphasis added) Care homes, whether public or private, must prevent elder abuse by omission by integrating palliative care into their operational plans.
Government failure to integrate palliative care is both an act of omission — failure to fulfill the right to health, and an officially actionable failure to protect — to prevent abuse — under the definitions cited above. Litigating this requires older persons to have access to justice. Integrating palliative care into primary health care as a component of the rights to health and to life, and making it available at all institutions that serve older persons is an appropriate action for pandemic preparedness planning going forward.
IAHPC advocates that a right to palliative care as a component of the right to the highest available standard of physical and mental health should be included in a binding convention on the rights of older persons. Suggested text: States Parties shall ensure palliative care services of good quality are available and accessible for patients and their families facing severe health related suffering.
Palliative care (PC) advocates are always trying to get more traction in the global health narrative, which systematically sidelines our equity concerns about access to essential opioid medicines and PC services. The polite lack of interest on the part of global health elites is unsurprising given their fixation on “reducing premature mortality” and “saving lives,” something PC declares itself powerless to affect. Governments construe the right to health as prevention and treatment of disease, giving little if any thought to health system planning for population level consequences when prevention and treatment are unavailable (for the vast majority of the world’s poor) or ultimately fail to produce the desired results by saving lives.
Not only is palliative care guilty of failing to prevent or control disease, the discipline admits its powerlessness over mortality itself. The World Health Organization definition says PC “intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.“ Paradoxically, this recognition is the source of palliative care’s power and underlies our offer of interdisciplinarity as the best clinical bet for people facing existential crises such as serious illness and death. PC’s interdisciplinarity produces the distinctive polyphony of palliative care teams, which is echoed in the public voice of advocacy.
Interdisciplinarity in the face of serious distress and unrelieved physical pain has the power to address both the conditioned and unconditioned domains of existence. Attention to the unconditioned, or unattended spiritual dimensions of distress, accessible when physical pain is properly managed, can relieve the anguish of patients and families whose hopes have been pinned on treatment and cure. Monastics’ prayer for a “holy death” refers to the impression our “passing” indelibly leaves with those who attended our final weeks, days, and moments. Palliative care can help us to leave them a gift, rather than traumatic memories.
St. Benedict transitus.
Henri Nouwen says, “Very often people’s lives are destroyed, harmed, or permanently wounded by the deaths of their relatives or friends. We have to do whatever we can to avoid this. When we are near death what we say to those who are close to us, whether in spoken or in written words, is very important.”
I would add, not only what we say but how we are, the kind of space we hold for the dying person and their family. There is a grace in acceptance of death and a desire to cultivate the garden of one’s dying as a way to bear fruit that can transform the lives of others. That can often come from the accompaniment offered by volunteers, clinical teams, and family members.
Photo by the author
Caryl Houselander said, “To try to avoid suffering is useless, for the seed of it is in the human heart…If it is useless to avoid, or to try to avoid, suffering, if suffer we must, it seems at least as reasonable to do it well as it is to speak well or to walk or sleep well. By suffering badly I add to the common burden …By suffering well I lighten it.”
Palliative care helps patients and their family caregivers to suffer well. At the health system level, it lightens the common burden. PC admits its powerlessness to change the outcome, but not the process or experience of serious illness and eventual decline. Acceptance of the outcome generates the power to transform the experience, to relieve the suffering. This entails courage to approach the unknown, the apparently fraught and threatening periphery, with truth telling, skill, and confidence supported by a team of like minded colleagues.
Interdisciplinary palliative care teams (IDTs) must include advocates! Our resilience and sustainability will eventually win us a seat at the global health table.
The featured image shows an IDT on a home visit in Addis Ababa led by Dr. Anne Merriman, Hospice Africa Uganda founder, with a nurse Bernadette Basemera, and Medical Officer from Hospice Ethiopie Dr. Ephrem Abaathun, with a patient and her family. Photo taken by the author and used with permission.
The IAHPC was honored to convene a side event at the 11th UN Open-Ended Working Group on Ageing with experts Dr. Farzana Khan, Ms. Harmala Gupta, Dott Simone Cernesi, Dr Zipporah Ali, and Mr. Marvin Mutch. These panelists, joining from Dhakka, Delhi, Modena, Nairobi, and San Diego respectively, addressed participants around the world who wanted to learn more about the palliative care needs of older persons during the pandemic.
“Side events” are set up — usually by civil society organizations such as IAHPC, at these meetings to educate civil society partners and member states, which are often represented by Permanent Missions at UN organizations, about particular issues relevant to the agenda items under discussion of the UN meeting itself. For instance in this case, many member states know next to nothing about palliative care, let alone the palliative care needs of older adults during the pandemic. The side event gave them an opportunity to hear from providers in the field, working under the most challenging circumstances for the past year.
We were very fortunate to have two global cosponsors, the International Federation on Aging and the Worldwide Hospice Palliative Care Alliance, as well as several NGO sponsors. A side event is like a “pop-up” at a meeting of UN member states, so we were delighted that representatives from so many civil society organizations attended this very graphic and moving discussion of the palliative care needs of older adults in multiple settings, including prisons, nursing homes, family homes, the community, or the village.
Dr. Farzana Khan, founder of Fasiuddin Khan Research Foundation in Bangladesh, spoke about her work with the International Organization on Migration, training Rohingya refugee residents of the Cox’s Bazaar to provide basic palliative care to their neighbors. She told the story of an older woman paralyzed by a stroke who learned the exercises sent by one of the palliative care team and who now says she “has her life back.”
Still very troubling and challenging is the lack of access to pain medicine in the settlement, Dr. Khan has to prescribe “every tablet” of morphine used to control severe pain, even though the Department of Narcotics Control, Ministry of Home Affairs reports that morphine is not a “drug of abuse” in Bangladesh.
Given the “digital divide” that particularly marginalizes older persons everywhere, Dr. Ali’s description of how community palliative care teams in Kenya purchased smartphones for older persons who went home to their village to die before the lockdown – so they could continue to communicate with their families — was striking. The fact that Dr Zippy could speak about this innovation to a global audience is also striking, since it raises the awareness in the world of how what is taken for granted in one location is not necessarily the case in another. Connectivity is also an issue. KEHPCA was able to assuage the fears and paralysis of many clinicians facing the specter of COVID by organizing educational workshops in basic PPE use, primary care, and symptom control.
Harmala’s report from CanSupport in New Delhi on the distress driven obstinacy of a daughter-in-law who refused to care for her mother-in-law’s apparently repulsive cancer shows the need for training and counseling family caregivers, many of whom are thrown into a role they are completely unprepared and uncompensated for. Their roles routinely involved skilled nursing, spiritual care, and in most cases servant, subjected to hard physical labor of taking care of a body in decline. It is an extremely unappealing role for many, one they certainly don’t do for the money. Harmala’s team at CanSupport is volunteer and donor funded, going out to families to support them in any way possible including clinical. Policy is needed to support them, as well as funding and respite care.
As Harmala said, “COVID didn’t take away our ears.” Palliative care teams can still listen, can still hear what matters to people who are mostly frightened and have no idea how to cope with what seems to be an unstoppable monster, including bringing financial ruin and existential crisis to families that had otherwise been stable. All the speakers emphasized the fear that has come up for older persons and their families during the pandemic, especially the fear that if they die alone from the disease, their families will be unable to send them off with the proper religious rites.
Dott Simone Cernesi, a primary care physician and gerontologist who has been working on the front lines of a nursing home in Modena, Italy, gave a strong presentation on the terrible situation of older persons in the pandemic, their utter abandonment by the health care system, and their “living like prisoners” in their rooms, unable to leave or socialize, share a meal, or worship together. He highlighted the bioethical issues raised by the pandemic, including for staff, who have to work extra hours with very little pay under very challenging conditions. Simone’s grim warning that, without palliative care, euthanasia and physician assisted dying are around the corner, was prescient. In some US states, and indeed in some countries, euthanasia is now allowed as matter of public policy, even as palliative care is not mainstreamed and readily available to all as the IAHPC recommends.
Mr Mutch continued Dr. Cernesi’s prison theme speaking from experience of an incarcerated person’s fear of dying in prison, indeed dying alone, shackled to a bed, without any form of care or comfort. He talked about how older persons are preyed upon in prison, seen as weaker, and more vulnerable, and therefore fair game for bullying. Fortunately, there are some great NGOs working on the US enthrallment to mass incarceration and life sentences. Very few policymakers have thought through the consequences imposing life sentences, which under international law entail including palliative care for incarcerated persons whom they have sentenced to die in prison. Mr. Mutch, advocacy coordinator of the Humane Prison Hospice Project, who was wrongly sentenced to 42 years at San Quentin State Prison before being released thanks to the work of many prison reform organizations, entreated us to remember that “ending well should not be premised on living an exemplary life…we cannot allow our collective need for vengeance overwhelm our humanity and continue to throw away lives.”
The chat box was full of comments and shoutouts from around the world, a witness to our global movement. Joan Marston, founder and former president of the International Children’s Palliative Care Network, now working as a volunteer with dementia patients in Capetown, thanked the panelists for “mentioning dementia. So many with dementia cannot understand the restrictions or the reason families cannot visit them. They struggle to concentrate on Whatsapp video so don’t feel connected . And while they may not be able to understand the reasons, they can feel the loss of family contact and we are seeing increased depression on top of demential which is heartbreaking.”
The way forward There is so much to do to ensure that all people everywhere receive the palliative care they need at a price they can afford. This side event just scratched the surface of what is being done around the world for older persons, and what needs to be done. UN member states are not stepping up to the plate as quickly as we would like them to. The international system seems to be on emotional and cognitive lockdown. Few mission representatives attended the interactive sessions of the Working Group, even though they were virtual, or participated beyond reading statements from capital on the first day. We know that many government officials are very busy, they have only small missions, and have to prioritise topics in a full agenda. They say they want to give attention to the issue of older persons but can’t. That’s one reason, but as many speakers this past week at the OEWGA11 said, the main reason is ageism, the poison that has infected modern society along with the many other isms on the table right now. It is both universal and tribal. Harmala said that “at least the pandemic didn’t cover our ears,” but she meant ordinary peoples’ ears. The world’s ears are covered though – the member states ears are covered, and we will have to take the lead. That’s all there is to it.
The presence of global civil society this past week was sophisticated evidence that our ears are not covered. We are listening to each other and to older people everywhere. We can recognize and weed out ageism, now that we are more aware of its deadly manifestations, and create a world that celebrates the mutuality and interdependence of all ages. Sadly, the multilateral system that should be putting energy into protecting the rights of older persons, is missing in action, its commitments in the much vaunted human rights system unfit for purpose. Multilateralism is out of fashion in the global north, but the human rights discourse it spawned has found a new home in some of the global south countries, and in civil society.
The 11th session of the OEWGA was evidence that the multilateral system of member states as it exists today is not fit for purpose unless it admits civil society organizations as equal partners and not simply as courtiers.
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.
It is my very great privilege, and my daily inspiration, to share my life with friends and colleagues who provide palliative care around the world, sometimes against all the odds, and certainly against the prevailing global health ideology, where only lives that are saved count. Below is just a small sample of the reports IAHPC received from our Advocacy Focal Points and Board members around the world. For more information and reports see Ehospice and the WHPCA World Day website.
Our IAHPC Focal Point in Kenya, Dr. Zipporah Ali, founder and Executive Director of the Kenya Hospices and Care Association, sent a link to KTNN’s TV news story describing the benefits of palliative care and highlighting Nairobi hospice. The hospice nurse told the audience that an estimated 1 million Kenyans need PC but only 10% of adults and 1% children have access. gave several newspaper interviews that resulted in big stories! Dr. Zippy also presented on a panel on palliative and dementia care on Monday, October 11 with Dr. Stephen Connor of the WHPCA and Justin Derbyshire of Help Age, among other civil society leaders.
It is a blessing to have colleagues who care and work for the integration of palliative care into dementia care. Such a revolution of tenderness, according to Pope Francis, in public discourse is the connective tissue of kinship, according to Fr. Greg Boyle, SJ, founder and director of Homeboy Industries in Los Angeles, the biggest gang intervention project in the world and winner of this year’s Templeton Prize. Dr. Connor also released the updated version of the WHPCA Atlas, an essential tool for global palliative care advocacy, which published the data from the Lancet Commission on Pain and Palliative Care.
IAHPC Focal Point for Bangladesh Dr. Rumana Dowla, sent a screenshot of the session palliative care colleagues held on Pulse, a virtual telemedicine platform and application offering 24/7 video consultation with doctors and healthcare providers in Bangladesh.
IAHPC Board member Harmala Gupta reported from Delhi that “On the 10th, CanSupport too held a programme on a national TV channel in which health ministers from five states and a health advisor from another participated. They discussed palliative care and its relevance on a public platform for possibly the first time. So yes, a small but important beginning has been made.”
Harmala also published an editorial in the Times of India entitled “Medicine’s neglected half: The relevance of palliative care is growing. In Covid times, it can provide total care.” Dr. Sushma Bhatnagar, President of the India Association of Palliative Care and IAHPC Advocacy Focal Point sent in a YouTube video documenting their activities.
In the Caribbean, IAHPC Board member Dr. Dingle Spence in Jamaica shared a YouTube link declaring CARIPALCA’s support for the “clarion call of PC around the world of all who need it!” She presents the IAHPC consensus based definition of palliative care, dispelling the myth that PC is “only for the dying” by describing the benefits of early integration. Dr. Natalie Greaves of the University of the West Indies cited evidence that most people in the Caribbean will die from one or more chronic diseases, which palliative care can be very helpful for. Nonetheless, she said, PC services in the Caribbean were very sparse.
Also in the Americas, Panama’s palliative care team at the government’s Social Security Institute took to Twitter posting short videos and interviews such as this one. Not to be outdone, the Costa Rican Social Security office took to Facebook to discuss palliative care in that country, where it is very well integrated. And finally, the El Salvador and Argentina palliative care associations issued informative press releases inviting policy makers and media contacts to ‘come and see’ what they were doing and share in the festivities.
The Palliative Care Association of Uganda celebrated with the Irish Ambassador to Uganda, William Carlos and Rev. Cannon Gideon Byamugisha, with a zoom webinar and Facebook feed. For more information on HAU’s wonderful work and professional training programs see their website.
Last but not least, Dr. Mwate Joseph Chaila, IAHPC Focal Point for Zambia sent a report from the “multi-disciplinary team of health workers at Livingstone Central Hospital, St. Joseph’s Hospice, and St. Francis Home Based Care. This team endeavours to improve the provision of palliative care for people with life limiting illnesses that are compounded by the HIV/AIDS pandemic, and increasing cancers and other non-communicable diseases like diabetes, cardiac failure, disability, etc. in Livingstone, Southern Province and Zambia as a whole.” The Zambia team had two radio interviews, and visited patients at the hospice and at home, distributing donations of foodstuffs to patients and families.
They captioned this photo “Team members filled with joy as they go back to their homes” Report by Munkombwe Wisdom Muleya, Chair person of the Livingstone PC Team. For more information contact firstname.lastname@example.org
What is most hopeful, and what was very apparent on World Hospice and Palliative Care Day, October 10, 2020, is that we are a global, hyper-connected movement of professionals, patients, families, and some friendly governments! We promote a cosmopolitan and egalitarian narrative that prioritizes multilateral commitments, including human rights, and insist that palliative care should be high quality, universal, and accessible before any government considers legalizing practices of euthanasia or physician assisted dying. In fact, the trail from the bedside to the halls of power is lit with this hope, which treats life’s grand finale with as much care as its grand entrance.
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.