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 as transformative practice: dedicated to my hospice/palliative care friends and colleagues around the world

Palliative care transforms everyone who participates in it — who gives and receives it — from the inside out.  It also has the power to transform systems from the inside out.  Palliative care practitioners need public recognition and funding to accomplish these transformations for the benefit of patients, families, and health systems around the world.  Palliative care ethics cut against the grain of profit-oriented systems that reward individualistic, rather than socially embedded, conceptions of health and wellbeing.

Palliative care values people as human beings, as ends in themselves. Its ethical compass overrides the dominant system priorities, being pointed at the moral imperative of alleviating vulnerability and distress.

By identifying and attending to pain along multiple dimensions — to “total pain” — palliative care affirms the inherent value of the person.  Its concern with suffering amounts to a declaration that our common mortality makes us all, no matter how ill or debilitated, equal. In that sense, palliative care is profoundly democratic and non-elitist.  That in itself is transformative.

The qualities and virtues palliative care builds in practitioners at the bedside (the microcosm) have the power to shift world views in the macrocosm. It is not overstating the case to say that the development of palliative care represents the beginning of a paradigm shift. Unlike their patients, palliative care practitioners and advocates have voice and influence in the public world, and are using it to call for the discipline’s integration into national and global health systems as a matter of justice.

Palliative care advocates such as myself and my colleagues who work at the international level, remind countries of their human rights obligation to institutionalise palliative care as part of the right to the highest attainable standard of health. This requires that they develop policies and allocate funds to support it.

The strategy of presenting palliative care as a human right, rather than as an option, allows policymakers to see it as a universal need rather than a political football. Populations all over the world are rapidly ageing, the prevalence of non-communicable diseases such as cancer, diabetes, and heart conditions, is increasing. Funders and policymakers realise that they and their families will also need palliative care in the not so distant future. Universally recognisable needs rarely cause political fights.

Palliative care practice is politically subversive, although not in the conventional sense of political campaigns that cause harm by seeking power or shaming opponents. Its virtues and ethics are deeply political in the classical sense though, a sense that has been largely forgotten, but is immanent in our political DNA. These virtues are expressed in the friendship, courage, and honesty (truth-telling) that exemplify best practice palliative care.

When the ancient citizenship virtues are practiced in the modern context of the private realm, at the beside, palliative care communities are actually reconstructing the genetic material of the public sphere, much as stem cells do. They are rebuilding damaged ethical tissue from the inside out, causing the dominant system or politeia — body politic — to shed its old skins, and reorient itself toward the common, rather than the private good.

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Palliative care and hospice practice inspires learning along spiritual, as well as clinical and psycho-social dimensions. Practitioners’  proximity to death and embrace of vulnerability, advances the emotional intelligence of society as a whole.  We have the privilege of accompanying people who are journeying between the worlds, our ‘patients.’ They and their personal caregivers have so much to teach us about what is really important during their final months and days.

Those teachings usually concern the values of surrender and open-heartedness, as well as struggle. Surrender, paradoxically, opens human consciousness to truths and realities that are not otherwise apparent when we are immersed in the more “worldly” dimensions of achievement and commerce.

Bedside practice teaches us to slow down, listen, and be respectful of both the “undignified” and the unfathomable.  What we learn there informs our family and public lives. It creates a ‘meme’ that can replicate effectively, transforming other key domains of our worlds.

May the vision of universal palliative care can become a reality!