Palliative care and the feast of the Holy Family December 31

Today’s first reading from Sirach reiterates the basic commandment to honor parents. I did a very shoddy job of that when my mother and father were still alive. I was not a Catholic then and knew nothing about the church, or religion, or ethics. Our family was ordinarily secular and attended church only on Christmas and Easter, if at all. Contempt for our parents and rebellion against the older generation was nothing out of the ordinary in London in the 1960’s. We heard no injunction to honor parents. We obeyed them out of fear and habit.

Fortunately, although both my parents are long gone to ‘the other barrio’ as my neighbor in Spain calls it, it’s not too late to repent and honor my father and mother in absentia. After all, we don’t honor for their sakes, any more than we honor God for his sake — he can’t possibly need anything we have to give! — we do it for ourselves and our own spiritual growth. Looking back at how I saw and judged them then, shows me my own defects and lack of compassion, and where I need to grow. They did the best they could given what they knew in their circumstances. Begging forgiveness is an ongoing process.

Honoring, in my case, takes the form of dedicating my life to redeem the less than ideal circumstances of my mother’s death, which could have been significantly improved by a skilled palliative care team. Palliative care was in its infancy in those days, and home hospice very rudimentary in Washington DC in the early 1970s. We now know that people with palliative care needs can live well with chronic disease and die peacefully. Some may need medical assistance, others not. Dying ‘badly’ as my mother did, without skilled medical assistance when it was needed, scars the families of patients — the bystanders and caregivers — perpetuating fear of death rather than trust in a loving continnum of life.

Dying well, not unduly fearfully or in pain, confidently because accompanied by confident caregivers, is not the norm in most societies. St Paul (Heb:2,15) describes his contemporaries — a description that could also apply to us moderns — as ‘slaves’ to the fear of death. Seneca tells us that Socrates was celebrated for having sought to free his followers from the fear of death by the way he himself faced it (Seneca, Epistle 24.4). Such freedom from that fear, unmarked by arrogance, is a mark of confidence — con-fide — with trust. Justified trust.

In our secular age that rejects concepts of eternity and honoring as Bronze Age nonsense, confident palliative care teams can be the source of trust in the process of dying. Justified trust, according to the philosophers, is productive of many social and common goods — a reason in itself to build palliative care into healthcare systems haunted by fear of death and the mania to cure at any cost. So I honor my mother and father these days by promoting trustworthy palliative care services as an essential public health service. And practicing my faith, often with lamentation, but con fide.

Massacre of the Holy Innocents 2023

Today, only a few days after Christmas, the Roman Catholic church remembers the massacre of all children under two in Bethlemem, ordered by King Herod to ensure he got rid of the baby Jesus. Since the Magi — “wise men” from the East — had told him that the prophecy had said that Jesus was “King of the Jews,” Herod saw him as a threat to his throne. Like so many political leaders now and through history driven by insecurity to consolidate their power at the expense of others, Herod ordered all the babies killed to ensure he got Jesus. He didn’t get Jesus, whose parents had fled into Egypt, having been warned by an angel of Herod’s plan. The babies were “collateral damage”.

It hardly needs saying that Herod’s self serving massacre of Bethlemen’s babes and toddlers is an archetype of the political violence that continues to haunt our world. We see it reported and recorded in real time on social media from many sites across the world, in places where people of all cultures, religions, customs, and power sacrifice children on the altars of ego and power.

And not just political leaders either — the sins of the churchmen are relentlessly exposed, as well they should be. News of child abuse and child sex trafficking as well as child slave labor constitute the dark underbelly of modern consumer culture. All of us moderns are implicated in one way or another. Acknowledging the interbeingness of this world entails acknowledging that none of us has clean hands. As the first letter of St. John says, “if you think you are not a sinner, you lie.” Direct resistence may be heroic, but it is futile against the weapons of this world and yields only sterile martyrdom. So what sort of counter-praxis of lamentation, repentence and atonement, can stand athwart the Herods of this world?

I like to think that palliative care is not just a blessing for people who have serious illness, whether death is near or not, but that its evolutionary praxis can confer blessings that undermine institutionalized violence. Palliative care, counter-intuitively, is a blessing because it befriends death, in the words of Henri Nouwen. In this way it is generative: the “blessed ones” the beneficiaries of palliative care as well as its practitioners, generate light, now matter how small the spark, that penetrates the darkness of suffering. That spark welcomes us all into the fellowship of the life that was made visible to us when God pitched his tent among us in Bethlehem. 

Palliative care, with its explicit attention to spiritual pain, to the infinite value of the human person, confronts the culture of death that authorized the massacre of the Holy Innocents, the estimated 1.5 million children killed in the Shoah, the taking of children as hostages on October 7, and the retalitaory genocide of children in Gaza, among other current wars. It is our work to cultivate the growth of palliative care into a modern Trojan horse whose interdisciplinary teams, rather than soldiers armed with lethal weapons, will dismantle the death system from behind enemy lines so to speak, one bedside at a time. Only in such a culture of life can further massacres of the innocent be unthinkable.

Christmastide greetings

Dear friends and colleagues

It has been such a privilege to work with you this past year. Please accept my gratitude for your friendship and my best wishes for a new year full of growth and prosperity.

Your commitment to palliative care, the sacred space where the veil between life and death is thinnest, inspires me. It takes humility — awareness that you are on holy ground — to compassionately accompany people taking their leave of this life. Your courage to share their suffering, if only for a moment, in order to glimpse its source and envision how your professional skills can relieve it, is contageous. It drives me into the spaces where international health law and policies are discussed and approved.

Advocacy speaks the truth in love even when those we address prefer we stay muted! Our short speeches to delegations and government representatives echo around the floors and ceilings of power, seeking somewhere to land. Charged to put love where love is not, to paraphrase St John of the Cross, our advocacy transmits the voices of your patients, their families and your care teams to the lawmakers responsible for crafting the public policies that supports life, health, and wellbeing to the end.

When our representatives’ apparent tone deafness to suffering and the relief of suffering tempts me to exasperation, I try to remember that our advocacy is a practice in kairos, or sacred time — the ‘acceptable time’ — rather than chronos, or chronological time. Your steadfastness in caring for your patients through thick and thin sets the standard and keeps me faithful to the mission. Together we follow the path that is no path, cultivating the patience that waits for our advocacy to bear fruit.

So thank you again for being part of this evolutionary partnership called palliative care advocacy and for helping me to turn stumbling blocks into stepping stones as together we work to make palliative care and essential medicines available to all who need them.

“Expert Patients Moved by Love”

Palliative care in a non-denominational ethos

On a work related visit to Hospice Africa Uganda, I was privileged receive an invitation to Kawempe Home Care, led by Dr. Samuel Guma. When I asked the origins of their slogan “moved by love,” the management team described Kawempe’s first AIDS patients as “abandoned and unloved”. Since the three founders of Kawempe, all of whom were Christians of different denominations, had no resources with which to start the project in 2007, they decided, following the example of Mother Theresa of Calcutta, to be “moved by love.”

This meant “to do for our patients what we would want someone to do for us if we were that sick.” Dr. Sam is in his second year of a Masters Degree in Palliative Care at Cardiff University. Providing free medical and care to disadvantaged people living with HIV/AIDS, TB and or cancer, the inter-denominational, inter-disciplinary Kawempe team, which now numbers thirty, starts every day with prayers. Team members reaffirm that they are “moved by love”, before moving on to their full day of tasks. When a team member goes “off the beam” [their words] and his or her actions start challenging the team ethos, her colleagues confront her with the question “are you moved by love?” — and within a short while, the ethos is restored and realigned.

Kawempe, together with its US partner, Samaritan Hospice in New Jersey Mission to Uganda, won the 2015 Global Partnership Award. As the leadership team and I reflected together during my visit, I could not help but wonder whether palliative care as it is developing in the US and Europe can be sustained over the long term by teams that do not articulate the explicitly spiritual ethos exemplified in the “moved by love” slogan. Can the unique palliative care values of care, courage, and honesty flourish in an explicitly atheist or legally secular environment?

Kawempe’s three person leadership team, which includes an Anglican, Roman Catholic, and a Muslim, decided from the start that they did not want to affiliate with any religion. “The diseases we are dealing with do not discriminate between religions,” Dr. Sam said. “It all comes down to being compassionate. Can you be compassionate if you are not spiritual?” he asked rhetorically. “A religious person is one who does acts of charity and care. This is how you know people are religious. Our religion is love. This is what moves us.”

As they described their work, the team’s use of the term “expert patient” caught my attention. Expert patients were Kawempe’s original very sick, indigent, community members suffering from AIDS, who were abandoned and “unloved,” in Dr. Sam’s words. Once restored to health by the team, through a course of ARVs, impeccable clinical care, and adequate nutrition, expert patients are the key to the program’s sustainability. Asked, “do you want to do for others what was done for you?” those who say yes, as most do, are trained as volunteers, and sent into the community to inspire and care for others in the same condition as they had once been, destitute of both hope and health. As “expert patients,” they go to those similarly destitute, those who are ready to give up, and share their stories. They say “see, we were just like you! Now look at us!” They mentor the dejected ones as they are restored to health, to become expert patients themselves, community volunteers, in turn. “This qualifies them as “religious” Dr. Sam says.

Kawempe’s “moved by love” ethos translate into vigorous practical social and clinical programs to benefit the community. These include a daycare and home visitation program for HIV positive children and pregnant moms; a prevention/education drama and music program for teens; income generating projects for community members such as a piggery, a mushroom farm, and a sewing workshop that generates beautiful purses, table mats, aprons, and laptop bags, and of course the beads for education project. Because the demand for their beautiful tailoring products is much higher than supply, they need about four more heavy duty sewing machines to increase output and thereby allow more families to support themselves.

Income from these various enterprises, most of which take place on the premises, supports school fees for the children of patients, always a high household budget line in Sub-Saharan Africa where all education has been privatised. Sales also support nutritional and program support for destitute families. The Kawempe monitoring and evaluation team keep tabs on all the results of these programs, and identify gaps requiring more resources. Lodged at a spacious rented duplex in an informal settlement or “slum”, Kawempe has a lab that runs tests for TB and HIV, and has set aside a special screening room for cervical cancer, one of the biggest killers of women in Sub-Saharan Africa.

Resource restrictions have prevented them from purchasing the crucial cryotherapy “gun”, however, which would allow them to freeze the lesions they detect. Kawempe has been seeking donations to buy land for a new center, as they are bursting at the seams with patients, staff, and activities. Love has indeed moved this project to its current state of flourishing. To enquire about donating sewing machines, or funds to purchase other sorely needed equipment, contact info@kawempehomecare.org.

[Author’s note: we were able to raise the funds for the sewing machines, which were delivered later that year.]

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