Elder abuse also an act of omission: COVID lessons and the global abyss in access to palliative care for older adults

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.

Illustration by Cathy Gendron

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.

For a tribute to older persons in the US who died in nursing homes, see the excellent Honoring Nursing Home Lives Lost to the Pandemic.

Inter-disciplinary teams (IDTs), palliative care, and the gift of powerlessness

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.”

Bread for the Journey, by Henri J.M. Nouwen, ©1997 HarperSanFrancisco. 

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. 

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.

Global Palliative Care Needs of Older Adults in the Pandemic — Open Ended Working Group on Aging 11th Session Side Event Sponsored by the International Association for Hospice and Palliative Care

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.”

Post-stroke, isolation, and now palliative care!

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.

Courtesy of the Kenya Hospices and Palliative Care Alliance

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. 

Please consider joining the International Association for Hospice and Palliative Care to support our very vital work for a world free of health related suffering.

Links to other organizations and documents

World Health Organization Global Report on Ageism, March 2021

CanSupport New Delhi

Faziuddin Khan Research Foundation, Bangladesh

Kenya Hospices and Palliative Care Association

Movimiento Giotto

Humane Prison Hospice Project

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.

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.