Palliative care: the butterfly effect, evolution, and spiritual care in Uruguay

May 11, 2017

The butterfly effect describes a process whereby very small, insignificant acts can create large, macro changes at another point in time. In the grand scheme of things, a palliative care team’s attention to an individual patient and family at the bedside is a small insignificant act. Yet I would argue that, cumulatively, such attention is catalysing the the development of palliative care policies and the evolution of consciousness more broadly.

Fr. Pierre Teillhard de Chardin, the Jesuit priest and paleontologist who discovered “Peking Man,” describes evolution as a process of increasing convergence, complexity, and consciousness, primarily a “psychical transformation,” which culminates in the universe becomes conscious of itself.

“Refracted rearwards along the course of evolution, consciousness displays itself qualitatively as a spectrum of shifting shades whose lower terms are lost in the night.” (Phenomenon of Man)

Palliative care is a medical discipline that demands its practitioners develop habits of reflection. Reflexivity builds complexity and is unthreatened by convergence. Practitioners are compelled to become more conscious of themselves in order to manage the complexity (often chaos) during the end of life process. Becoming conscious of oneself requires the courage to be with, to live into the truth of such suffering, no matter how unpalatable or dis-grace-ful (devoid of grace). Only through acceptance can such pain be transformed, alchemized, healed by grace, (etymologically related to gratitude for Being itself). One bedside at a time, the courage, friendship, and honesty emblematic of best practice palliative care teams, can heal the global pandemic of untreated pain — the geo-political gap in access to pain medicine, the suffering/dying friend that is our other self (Aristotle).

The palliative care providers I met on my trip in Uruguay and Argentina exemplify the evolutionary ethos of service and clinical excellence.  They are eager to grow, to provide spiritual care as an essential component of whole person care. To that end, the Uruguay Palliative Care Association is planning a working group to study how to identify and relieve spiritual suffering. Uruguay is a tiny country, with a predominantly secular, relatively affluent society whose publicly funded palliative care service routinely offers psycho-social and pharmaceutical remedies for pain, but lacks a consistent spiritual care component.  The Archbishop of Montevideo, Cardinal Daniel Sturla, was very supportive of palliative care when we met earlier this month, as was Fr. Daniel Kerber, PhD, who sometimes sees palliative patients with Dr. Laura Ramos.  As President of the Uruguay Palliative Care Association, Dr. Ramos will be collaborating with Fr. Kerber to organise the national spiritual care initiative.

Uruguay was the first country to pass the Inter-American Convention on the Rights of Older Persons.

Monsignor Daniel Sturla, Cardinal of Uruguay, with Drs. Gabriela Piriz and Laura Ramos, President of the Uruguay Palliative C

Monsignor Daniel Sturla, Cardinal of Uruguay, with Drs. Gabriela Piriz and Laura Ramos, President of the Uruguay Palliative Care Association

Integrating spiritual components into the development of public health palliative care practice will ensure the transformation of providers, patients, caregivers, health policy, and eventually society as a whole, into one that values and tends the vulnerable Other.  Such palliative care catalyses collective metanoia and evolution: it holds a mirror to the universe as it becomes conscious of itself.

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Publicly provided long term and palliative care for older persons in Montevideo

It is spring in Uruguay, and the air at Hospital Luis Piñeyro Del Campo, the only publicly funded home for older persons in Montevideo, is heavy with the scent of jacaranda trees planted throughout the spacious campus. Luis Piñeyro del Campo (1853-1909), for whom the home was named, was a constitutional lawyer, soldier, and founding father of the Uruguayan state. Educated by Jesuits, he was a key leader of the la Comisión Nacional de Caridad y Beneficencia Pública (National Charity and Public Welfare Commission). The Hospital for older persons we visited the other day is testimony to his prioritisation of the most vulnerable and the poor in Uruguayan society. 

I was in Uruguay for the World Health Organisation Global Conference on Non-Communicable Diseases, to advocate for the inclusion of palliative care in oral interventions and policy documents where appropriate, and to support our national partners in the Ministry of Health and the Uruguay Palliative Care Association. The President, Dr. Laura Ramos, a psychiatrist whose mission is to develop spiritual care for Uruguayans facing life-limiting illness,  arranged a visit for us to what Montevideans fondly call “Piñyero de Campo.”

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Left to right — Dra. Laura Ramos, the author, Dra Sara Levy, and Dra Alejanda Ferarri

Laura’s colleague, geriatrician and palliative care Dr. Sara Levi, showed us around the campus, which used to be an asylum that was home to more than 1000 souls. It now has 216 beds, organised into five pavilions, depending on level of disability (including severe dementia) and care needs. Residents are mostly sixty-five and older, must be low-income, and with a diagnosis requiring residential care. The majority are “elder orphans,” with no family members to care for them at home. The exception are those who come for the daycare program while their family members work. 

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We arrived just as lunch was ending and saw 45 residents in the “high dependence” ward, all in wheelchairs, some tied so they wouldn’t fall out, many with a sugary drinks and a banana in front of them. Some responded to greetings, but most were isolated in their own worlds.  Although it was as grim as the “memory care” wards in even the highest end “retirement homes” I have visited, the facility was airy and clean, and the staff seemed attentive and kind. Palliative patients are scattered throughout the pavilions until a dedicated ward is finished, hopefully early next year. 

IMG_8988We stopped by to check on Sarah, a103 year old patient in her last days, who was sleeping in the corner of one of the salas, or wards reserved for residents with mild disabilities. Doctor Sara told us how patients used to die here in terrible suffering until she was able to introduce palliative care in 2001. She recounts how when she first brought an ampoule of morphine in to the wards, she was greeted with horrified stares. Now the staff are trained to use morphine for patients with severe pain, and have overcome their initial opioidphobia.

IMG_8982Because the government of Uruguay recognises the right to healthcare, it provides its citizens with a basic package, which includes palliative care and controlled medicines, free of charge. A parallel system of private insurance offers a more comprehensive menu for those who can pay.  I have been privileged to go on home visits with doctors who provide both, and to visit the inpatient wards at the private hospitals, which provide excellent care to patients who cannot be managed at home.

IMG_8985Uruguay was one of the first countries to ratify the Inter-American Convention on Protecting the Rights of Older Persons, which recognises the government’s obligation to respect, protect and fulfill all the basic social, cultural, economic, and political rights of older persons, including the right to palliative care.  UN member states, through the Open Ended Working Group on Aging, have been debating whether or not to begin drafting a binding convention, similar to that protecting the rights of children, persons with disabilities, women, and indigenous groups, and will consider palliative and long term care in July 2018.  I hope Sara Levi will come from Montevideo to speak about those in her care at Piñyero del Campo.

Luis Piñyero del Campo would no doubt have approved of palliative care, a medical specialty that developed during the century after his death. His life and the hospital named for him, resonates with Pope Francis’ description of palliative care “an expression of the truly human attitude of taking care of one another, especially of those who suffer. It is a testimony that the human person is always precious, even if marked by illness and old age.”

Palliative care travelogue: Public health and good faith caring for low income seniors in Uruguay and Buenos Aires

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. IMG_6958The 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.

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“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.  

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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.

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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.

Fingering the wounds

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.

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