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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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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