A New Year’s resolution: allow suffering to transform us, starting with nursing homes

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.[1] 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.[2] As of December, 2020, COVID had killed over 106,000 residents and staff of US privately owned, but publicly-funded, long term care facilities.[3]  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.[4] And death rates are significantly higher at “for-profit” nursing homes than their non-profit counterparts,[5] 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.”[6]

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.[7] 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.’

[1] Ezekiel 11:19

[2] https://www.latimes.com/projects/california-coronavirus-cases-tracking-outbreak/nursing-homes/

[3] https://data.cms.gov/stories/s/COVID-19-Nursing-Home-Data/bkwz-xpvg/

[4] https://www.aarp.org/ppi/issues/caregiving/info-2020/nursing-home-covid-dashboard.html

[5] https://nonprofitquarterly.org/aarp-for-profit-status-correlates-to-more-nursing-home-deaths/

[6] https://politicaltheology.com/apocalyptic-witness-johann-baptist-metz-1928-2019/



[7] https://freakonomics.com/podcast/compassionomics/

Nursing home morgue.

IAHPC Partners Celebrate World Hospice and Palliative Care Day — Part 2 of #WHPCDay2020 blog

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 wisdommunkombwe@gmail.com

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.