Today is the Feast Day of St. Ireneus, whose most famous statement was, ‘the Glory of God is the human being fully alive.” How does this relate to End of Life (EOL) Care? Is a fully alive human being one who stays alive for as long as possible, extending bodily life indefinitely with chemicals, and machines, tubes hooked up to every orifice? I think not. Fully alive means attending to the life of the spirit as well as the body, and as St. Augustine said in sermon 127, “If so much care and labor then is spent on gaining a little additional length of life, how ought we to strive after life eternal?”
As populations age all over the world, and people live longer with more chronic conditions such as heart disease, cancer, diabetes, stroke, etc. churches face the wonderful challenge of reminding parishioners that the life of the spirit can be cultivated when a person is diagnosed with a life limiting illness, and that palliative care must always include spiritual care, or it is not truly palliative care. The root word of “palliative” is “pallium”, which denotes the wool cloak the Pope places on the shoulders of a bishop to remind him to care for his sheep. The Pallium Niche in the vault of St. Peter’s Basilica in Rome contains the wool woven by nuns from the sheep raised at Vatican farms.
Spiritual distress toward the end of life is often profound, both for believers and non-believers, and clinicians need to learn to recognise it so that they can bring in a spiritual care professional or member of the clergy, if requested, to counsel patients and caregivers when the end is near.
A newly published study in the Journal of Palliative Medicine showed that clergy had “poor knowledge of EOL care, and that 75% desired more EOL training…Clergy described ambivalence about, and a passive approach to, counseling congregants about decision making despite having defined beliefs regarding EOL care.” The study concluded that “poor knowledge of EOL care,” and I would add of the teachings of the church re palliative care, “may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.”
The good news is that focused education by trained practitioners can overcome ambivalence, passivity, and poor knowledge of EOL care. The bad news is that pursuing non-beneficial treatments exacerbates the physical, socio-economic, and spiritual distress of patients and families. Instructing doctors and nurses to “do everything possible” to keep a patient alive runs counter to the Catechism of the Catholic Church, which teaches that “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment.” (2278)
The key words are “non-beneficial, burdensome, and disproportionate to the expected outcome.” The family, patient, and palliative care team, including the spiritual care provider, need to know how to unpack what those terms mean for that particular patient and family, preferably before a crisis, not during one, when people are in the rough waves and chaos of active dying.
Human beings nearing death can also, paradoxically, be fully alive, and as many hospice doctors, nurses, volunteers, and caregivers who have attended the dying can attest, they are often at their most luminous and alive when supported by good palliative care, which includes pain relief as well as confident spiritual counseling. Happy Feast Day!
Uruguay is a tiny country, population of just over 3.4 million, where seniors with limited means who suffer from chronic conditions can receive palliative care at home or in the public hospital. It has universal health coverage instituted by a left-leaning, human rights centered government that took office after the dictatorship was deposed. Interestingly, Dr. Gabriela Piriz’s multi-disciplinary team at Hospital Maciel (formerly Hospital de San José y La Caridad) in the old section of Montevideo, is young, militantly secular, and non-denominational. In contrast to Uruguay’s universal coverage, only about 4% of those who need it receive palliative care under Argentina’s public health system, leaving an enormous eldercare and hospice gap barely touched by the faith based organisations I visited in Buenos Aires. According to ACLP President Dr. Tania Pastrana, 96% of people in Argentina die in pain, with treatable symptoms. Argentina ranks 37th of all LAM countries in quality of death. Interestingly, Argentina is chairing the Open Ended Working Group on Ageing at the UN, and supports development of a convention to protect the rights of older persons. I have insisted, during preliminary, exploratory meetings to discuss the need for such a binding instrument, that palliative care is an essential element of any such convention.
The day after I arrived in Montevideo, I went out on housecalls with Dr. Piriz’ service, which supplies free medicines, medical devices, and clinical services to older persons living at home. The only element lacking was spiritual care, in which teams are not yet trained. Impressively, the service has managed to cut the palliative sedation rate of Uruguay to 6.1%, less than half the regional rate. Doctors can give palliative sedation only with patient and family consent in order to mitigate refractory symptoms that are causing unbearable suffering. The majority of terminal sedations in Uruguay are performed at home with family members present. Doctors don’t administer palliative sedation with the intention of causing death, but to relieve terminal agony when no other remedy is available. It is the mark of a well trained palliative care service that they can keep this intervention at bay for as long as possible.
New challenges for homecare teams serving poor neighbourhoods around Montevideo are the extreme weather that occasionally tears roofs off patients’ homes or makes muddy (unpaved) roads impassible. Police actions related to drug market violence can also make it too dangerous for teams to enter the barrios and see patients in their homes. Sometimes they can only enter with armed escorts. Patients with limited family support and the means to pay, can access a system of private, assisted living residences. The Maciel is a last resort when there are no family caregivers and no money.
In Buenos Aires, I visited two organisations serving seniors and the seriously ill with limited means. Both are faith based — one Jewish assisted living and one Catholic hospice — and both are funded by private donations, which are dropping precipitously in the ongoing economic crisis.
Casa de Bondad is a hospice in the Manos Abiertos network, a charity that serves the poorest of the urban poor. This hospice’s work was inspired by the dying words of St. Alberto Hurtado, SJ., the Chilean saint cannonised in 2005, who prayed to imitate Jesus’ injunction to “do for the least of them,” as you do it for me (Mt. 25,40). Below is a photo of an old painting that hangs in Casa de Bondad depicting a band of Jesuits sheltering under the cloak of the Blessed Mother. The hospices, which operate on a shoestring in four Argentine cities today, are the fruit of a dream conceived over ten years ago by one Jesuit priest with a dedicated team that includes volunteer Executive Director, Ana Pannunzio, and Medical Director Dr. Sofia Bunge.
“Serve everyone as Christ himself.”
Only six of the eight beds at Casa de Bondad were occupied, not because there is no demand for all of them (there is a long waiting list) but because the current level of donations won’t sustain the salary of the other nurses who would be needed to fill the extra shifts. 150 trained volunteers, two salaried physicians, and six shift nurses serve the fortunate few who make it through the door at any one time. I met several volunteers and all six patients, five of whom were young adults, aged beyond their years by poverty, and preventable disease, but far from elderly. All were terminal, beautifully cared for at the last, in a relatively non-institutional setting whose mission is to provide them with companionship and skilled nursing at their time of greatest vulnerability. For more information about the hospice and to make a donation, see this link.
The other volunteer palliative care team I met in Buenos Aires worked at the Jewish assisted living home, LeDorVaDor (Hebrew: from generation to generation). LeDorVaDor was founded to serve low income Jewish seniors in Argentina, those whose adult children can no longer care for them, or who have nowhere else to go. Donors and wealthy patients, who are the minority, subsidise the care of those with no means to pay, ensuring that residents lack for nothing in this very high end facility. A lifecourse approach, including Montessori for dementia patients, keeps residents active and engaged for as long as possible. The library was well stocked, the cafe open, the kinesiology program busy, and the high staff patient ratio evident. The palliative care team, employed by the hospital in their different clinical capacities, all serve as volunteers, providing an extra layer of care for patients whose condition offers no further hope of treatment.
The author with a patient and palliative care team at LeDorVaDor
Dr. Wanda Gisbert, who trained in palliative care at the Hospital Tornú, originally Argentina’s only public TB hospital, founded the team, recruited and trained interested colleagues, and introduced the discipline to an uninterested administration at Hogar LeDorVaDor. Her team is gaining recognition as colleagues see how palliative care not only improves their patient outcomes, but complements, rather than competes with, their own clinical specialties. LeDorVaDor and Casa de Bondad both provide great models of leadership and service for low income seniors in the city of Buenos Aires.
I met some wonderful palliative care clinicians and geriatric specialists who were attending the teaching and advocacy workshops co-sponsored by IAHPC and the ALCP in Argentina and Uruguay. All were committed clinicians caring for fragile elderly populations under very challenging circumstances, and were frustrated by the bureaucracy that interferes with their ability to do their job as well as possible. The need for expert elder care is growing fast, and trained staff and volunteers so few, but so valiant and big hearted, both in the public and private sectors of both countries.
The volunteer palliative care team at LaDorVaDor, Dr. Gisbert far right
The ITES (Iniciativa Transformando El Sistema) workshop, spearheaded by Dr. Roberto Wenk of FEMEBA, and attended by physicians from almost all regions of the country, represented an excellent step towards the further propagation of person centered palliative care in Argentina. Learning how to teach palliative care to medical students, as these professionals were doing, is key to expanding professional capacity to bring older persons expert care at the end of life.
I went on home visits to very poor neighborhoods in Montevideo last week with the excellent publicly funded palliative care teams at Hospital Maciel, originally a charity hospital founded by an order of sisters in the eighteenth century.
Interestingly, the otherwise state of the art palliative care teams did not do spiritual care, or do spiritual assessments when doing patient intake. The professionals I asked about spiritual care responded that they provide “psychological care,” if necessary. Courses in psycho-spiritual elements of palliative care are taught by psychologists.
Uruguay is a very secular country, an anomaly in Latin America, with a only minority of citizens identifying as Catholic or regular churchgoers. Yet the country is well off, and very progressive in many ways, also an anomaly in that its national health service includes home based palliative care services. The people are extremely friendly, and greet one another, even strangers like myself, with a kiss, much like the early Christians! It made me think, as I often do when I reflect on my secular friends and family members who wouldn’t be caught dead in a church, of theologian Dietrich Bonhoeffer’s “religionless Christianity,” a concept he did not have a chance to develop before he was executed by the Nazis in the last days of the Third Reich.
Although he was a Lutheran pastor, Bonhoeffer was very critical of the church and understood why people were drifting away from an institution that offered largely “cheap grace…grace without discipleship, grace without the Cross.” (Cost of Discipleship) As Bonhoeffer said, “We are moving towards a completely religionless time; people as they are now simply cannot be religious anymore.” (Letters and Papers from Prison) The concept of “religionless Christianity,” on the other hand, demands costly grace of disciples, and obedience to Jesus’ call to radically follow him.
This morning’s mass readings for the Second Sunday of Easter include Jesus’ famous words to the disciple Thomas, the one who said he would not believe until he put his fingers in the wounds made by the nails of the Crucifixion. Jesus tells him straight up to put his hands in the wounds, and feel for himself. Although John’s Gospel does not specify that Thomas actually did that, it’s Jesus’ instruction in an era of religionless Christianity that interests me, because that is exactly what today’s doubters, today’s Thomases should do. Feel for themselves the wounded body of Christ.
That wounded body is the forgotten ones — the people who are hungry, humiliated, diminished, marginalised, mentally ill, and dying. The doubters should put their hands in that body, literally get their hands dirty with the work of serving, like Dorothy Day, like the countless anonymous Christians and non-Christians who serve their helpless fellow human beings all over the world. Whether or not they interpret it that way, they are tending to the wounded body of God. I think that is what Bonhoeffer was getting it.
I particularly love how John tells us that when Jesus appeared in his resurrected body in the middle of the huddled and frightened post-Crucifixion disciples, “Jesus breathed on them and said “receive the Holy Spirit.” Classical Greek renders that breath as πνεῦμα or pneuma. The Holy Spirit came through his breath. I remembered to do the Tibetan Buddhist practice of tonglen at a patient’s house the other day in response to the dense suffering that surrounded this teenager’s dying, and what a great practice tonglen is in such circumstances, when the pain brought on by the despair of losing a child is unbearable. Being present to that despair allows us to breathe in the suffering as we inhale, and send out the holy spirit in our outbreath, our pneuma, to serve as a container for the pain, when the one who is suffering cannot.
Providing spiritual care as an integral component of palliative care can respect the secularity of the patient and family. It does not have to be religious or even “spiritual,” but can simply be compassionate, intentional presence — being with the patient and family in their distress. According to one consensus definition, “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” Attending to that need for meaning and purpose fills a vacuum that is otherwise filled with great suffering, suffering that cannot be assuaged by any amount of excellent clinical care.
I have been praying daily for the young man who is dying of an aggressive brain tumor, who is bedridden and whose friends don’t visit any more, and for his mother, whose grief we we were able to accompany for a brief time last week. Thank God for the palliative care teams — the religionless Christians — who could visit their humble home at no cost to the family, who could at least alleviate the young man’s physical pain and by their very attendance on him, let his family know they are not abandoned in their hour of greatest need.
While it is now common knowledge among palliative care folks that the word “palliative” derives from “palliare” or “cloak,” I had not realised that its origins are the wool pallium worn by ancient philosophers, and that the Christian tradition of the papal pallium derives from St. Martin cutting his cloak in half with his sword and giving it to the naked beggar by the roadside.
Monsignor Vincenzo Paglia, President of the Pontifical Academy for Life, said at a Vatican conference on palliative care last week, “when Saint Martin donated his cloak, it was cold, it was the winter, but for the poor person he gave it to, it was spring, because he was surrounded by love and tenderness. Palliative care will help the world find a new spring.”
A commercial culture that is militantly “anti-ageing” and ageist must also be anti-dying, which in these high tech times is undignified, inconvenient and burdensome to both the patient and caregivers. Being anti-dying is not the same as being anti-death though, as the “death with dignity” folks are instructing us. Individual patients’ refusal or unwillingness to tolerate the prolonged dying characteristic of modernity directly reflects the institutional deficits of health systems’ inability to care for them in a way that aligns with their individualistic values.
Healthcare systems designed to care for patients suffering from traumatic injuries, infectious diseases, and conditions requiring surgery and intensive care are now being overwhelmed by growing numbers of older persons suffering from multiple chronic conditions that persist for years, if not decades. Rather than fall through the multiplying cracks, many of these folks would rather physicians spared them the harrowing journey by hastening their deaths.
The medical community is well and truly split over whether the state should regulate healthcare professional participation in suicide. The organised palliative care movement largely recommends governments ensure that that palliative care is widely available before authorising physician assisted suicide.
But it is not in palliative care’s nature to be oppositional, and providers are challenged even to think politically. Few palliative care organisations are mobilising against the self-appointed “death with dignity” movement, despite the fact that assisted dying is cheaper than palliative care and will put a damper on public investment and research funding. Palliative care can’t insist that policymakers force patients to survive within inhospitable modern healthcare systems, least of all in secular societies that no longer ground the value of the human person in a collective concept of the sacred. The most palliative care can hope to do is witness, through a sustainable ethos and praxis, to an alternative life- and person-oriented set of values. Witnessing does not make for aggressive politicking.
The fact is that the palliative care and assisted suicide movements developed in response to the very same profit-oriented, over-medicalised disease-centred health care system. Palliative care just hasn’t developed fast enough to mitigate patients’ perfectly understandable desire to check out as soon and as painlessly as possible. The absence of a political analysis in the palliative care movement, does not obviate the fact that deriving a generalised legal norm of killing from the compelling individual cases of patients in extreme distress who want to exercise their ‘right’ to autonomy and a medically assisted death, institutionalises the original system deficits that inspired the initial decision to suicide. Assisted suicide policies masquerade as “compassionate choices” for individuals, yet actually institutionalise rules of indifference to families and communities who struggle with inappropriate care.
Normalising physician assisted suicide through legal regulation, de facto ratifies modern individualist ideologies, system failures and the family/community disintegration characteristic of globalised neoliberal societies. Rather than a epitomising an evolutionary success story, “Dignity in Dying” memorialises the catastrophic failure of modernity to include the marginalised and undignified in its many success stories. Citizens who would rather die deny the irreducible relationally of the world: they refuse their fellows’ claims, opting out, rather than “staying” to ensure a common salvation [etym “salve” or healing] through more human social and health policies. GK Chesterton nails it when he writes in The Flag of the World, “The man who kills a man, kills a man. The man who kills himself, kills all men; as far as he is concerned, he wipes out the world. The suicide […] insults every flower by refusing to live for its sake” — born of ego and pride, an over-emphasis on self rather than the rest of reality.”
Tragically, this secular culture of death, like a plague of ticks, has already burrowed too deep into decadent, superficially successful societies of the strong, those who have had their day in the sun. The individuals who request others to assist their suicide are guilty only of personalising the normative nihilism that characterises western modernity.
Palliative care, the “slow medicine” that helps patients and families faced with terminal illnesses live with acceptable quality until natural death, even in the teeth of great pain and distress, is the quintessential medicine of the weak, the medicine that will leave no one behind, to steal the tag line of the 2030 Agenda for Sustainable Development. It occupies the in-between spaces abandoned by the power of the state and medical professionals so consumed by the power to cure, they perceive their inability to ensure patient immortality as permission to kill.
I’ve heard yesterday’s reading about Jesus healing the paralytic at the Sheep Gate with seven porticos (John 5:16) many times, and just like with all the Gospel stories different things resonate at different times depending on where I am at. What struck me about it yesterday though was John’s initial description: “In these [porticos] … lay a large number of ill, blind, lame, and crippled. One man was there who had been ill for thirty-eight years.” He said to Jesus, “Sire, I have no one to put me into the pool when the water is stirred up: while I am on my way, someone else gets down there before me.” The footnote says, From time to time an angel of the Lord would come down and stir up the waters. The first one into the pool after each such disturbance would be cured of whatever disease they had.
So in 38 years no one had helped him get down to the pool! Were there no assistants around for such cases? Had anyone helped the “large number” of others? The mind boggles at the masses of blind, deaf, and crippled folks abandoned by the porticos to stumble down into the water for a cure if they were lucky enough to make it on their own.
How similar is that to the way modern society, two millennia later, marginalises people with disabilities, those with serious illness who cannot be cured? That’s where palliative care comes in — it is for everyone, and is slowly developing protocols for persons with disabilities. IAHPC convened several organisations at the UN in Geneva earlier this year to have a parallel event on the topic at the Social Forum, addressing palliative care for the deaf, for children with disabilities, and for older adults with dementia.
While palliative care teams can’t always help people “take up their mats and walk” as Jesus did in that particular case, they can definitely (a) be present to provide clinical support, and (b) to help patients down into the healing waters when the angel stirs them up, supporting the person’s inherent dignity, providing spiritual care on request, and helping relieve pain and distressing symptoms.
The Bethsaida scene in John’s gospel is Lourdes without any patient assistants. That was the saddest thing for me in yesterday’s story, the lack of community. It was a source of joy, though, to know that today we can people that same scene with palliative care teams who can wheel patients down to the water when it is stirred up, when either we, or someone we love is faced with a life-limiting illness. Integrating palliative care into health systems will leave no one stranded by the pool when the angel comes.