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.

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Fingering in 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 that 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 anomoly 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 anomoly 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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Palliative Care: Slow Medicine in the Spring

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.stmartin3

  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.  Featured-Image-DIY-Anti-Aging-Cream-Serums

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. 

Palliative Care at the Sheep Gate

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.palliative-care-patient-nurse_1_orig

Healthy Dying

This post was inspired by a recent Tricycle article, “Death as a Spiritual Experience.” Our culture is so death phobic, yet paradoxically so entertained by violent death, that the idea of healthy dying seems counterintuitive. The much touted public health concept of “Healthy Ageing” conveniently omits the final chapter — dying, which would seem to contradict, or at least undermine, the goal of health.  How could dying possibly be healthy?

The rational solution to the problem of assuming that dying must be unhealthy, is of course government approved “physician-assisted” dying or euthanasia.  An alternative approach, which considers dying a natural process and an opportunity for healing, is of course palliative care. Offering support to patients and families through the illness, dying, and bereavement process alleviates a measure of suffering by offering to mend  breaches of connection, or heal relationships between family members. These include breaches within the self, failures to connect with, and love parts of yourself you have always despised. The transition out of the body that we call dying will be much more painful for all concerned until we accept all those parts. Doing so restores us to wholeness, or health.

Tibetan Buddhism is one of the few religious practices that directly confronts the experience of dying with a forensic, phenomenological approach that takes the transition to other vibrational realities seriously. Christianity also takes it seriously but is based on the third person perspective, or the idea that we each can mystically participate in the dying experience — the Passion — of the Christ. Doing so does not necessarily demand that we be the witness to our own dying, though.

And Vipassana teacher Larry Rosenberg points out: “most of us are imbalanced when it comes to death. We haven’t come to terms with the nature of our bodies, and we don’t see death as a natural process. So we have all kinds of funny reactions to it: excessive joking, or avoidance, or preoccupation in a morbid way. Death awareness practice can bring us into balance.”

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We can practice for dying simply by becoming aware of our breathing — of each outbreath that might be the last, and then the next and the next and the next. Making all our living in awareness of the outbreath a practice for dying enables us to  directly experience the present moment, rather than experience in a mediated way, as narrated, or not be experienced at all.

I aspire to experience all my dying: after all, it may be the only time I do it in this body, and it would be a shame to miss out!

Catholic caregiver blog. Tuesday, St. Peter Damian

Tuesday — Meeting with OAS for approval of IAHPC membership application. Trip to DC.

Jawdroppingly beautiful sunrise this morning after a very rough night with little sleep.  Impossible to photograph the layers of light behind the bare black branches, but it was riveting, and I’m glad I moved the bed to face east to catch it as I pray the office with my cup of tea. And the Communion Antiphon was Psalm 9:2-3 “I will recount all your wonders,/I will rejoice in you and be glad,/and sing psalms to your name O Most High.”  O most definitely, as I would be entirely lost without you.

The first reading was from Sirach, as it has been for the past week — warning us that “when you come to serve the Lord, /stand in justice and fear,/prepare yourself for trials./Be sincere of heart and steadfast.” That is my intent as I do this service work, both for Ruth and for the wider world.  I was tormented last night with the euthanasia debate and kept telling myself to put my worries in God’s hands, as I cannot solve it myself.

The Sirach reading continues “incline your ear and receive the world of understanding…Wait on God with patience, cling to him, forsake him not;/thus you will be wise in all your ways.” My main concern is that, if our advocacy position is to force people to defer physician assisted dying and euthanasia until palliative care is mainstreamed and all the providers trained, etc., then we are effectively forcing them to suffer without proper care.  That seems to be a deeply unethical advocacy position.  I realise it is the responsibility of the healthcare institutions and the state (not ours) to develop the policies and train the providers, but what if they don’t?

It is our responsibility to lobby and advocate as skilfully and persistently as possible for palliative care, but what if our advocacy falls on deaf ears?  Can we in all good conscience oppose calls for medically assisted dying and euthanasia, thereby forcing people to suffer, essentially in abandonment and neglect?  And as Sophia pointed out in our conversation yesterday, the Belgian position has palliative care covered, and still includes euthanasia. Perhaps we need to join forces with the euthanasia lobby but make our support conditional on the fact that they also lobby for PC?  Interesting that Age Platform Europe does not have a position on euthanasia since its members have multiple positions.

At breakfast Ruth was telling some story and said “I can’t believe I was once able-bodied” and then started to cry. I said, well, now you are able-souled. We got over that moment, but it will be good if we can talk more about it bit by bit.  Euthanasia is such a fruit of modernity.  Watching “Call the Midwife” and Sister Monica Jones used the phrase “ostentatious silence.”  We both loved it.  It is perfectly rational that moderns want euthanasia as a right, in a world without God.  Euthanasia and physician assisted dying are the fruits of modernity.  I don’t want to be against anything: I just want to be for it: for palliative care, for connection, for solidarity.

Today we celebrate the feast day of Peter Damien, who I did not know about until I looked him up — 11th Century Benedictine, who wrote a piece on “The perfection of Monks” calling them to be “smeared with pitch” both inside and out, like the Ark. The pitch is the inner lining of love, and the outer lining — how we act to others.  Inwardly united to God in love. If only one side is smeared with pitch “they cannot be saved from shipwreck in the deluge”, since they don’t have the double lining for protection.It’s a call for unity in love, basically.  It seems he had a very adventurous and political life, riddled with disunity and faction. Poor man.

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