Calling for a Palliative Care Culture

Palliative care, the “medicine of the future,” (Dr. Carlos Centeno) has more than a clinical dimension. It has social and political dimensions that spring from its grounding in a commitment to relieve total pain, which includes spiritual pain. The social and political dimension of palliative care has the potential to heal body politics damaged by systematic indifference to what societies perceive as unworthy and unsuccessful. It heals by normalising new ecologies of care that honor and include patients, providers, families, and the wider community. The novel patterns, or resonances, characteristic of palliative care, paradoxically, embody the classical virtues of practical wisdom (skill), generosity, compassion, courage, friendship, and prudence. They provide an interpretive key to optimal (evolving) human functioning that perfects, rather than challenges, conventional, or curative medicine.

The approach proclaims, through its praxis, that how individuals die matters to the health and well being of the society, polity, or state. Simply put, the how, why, and wherefore, of every single death, however anonymous or humble, either damages or dignifies the body politic as a whole. As John Donne said many centuries ago, in lines that are just as relevant today, “Any man’s death diminishes me, because I am involved in Mankind.” (MEDITATION XVII, Devotions upon Emergent Occasions)

Our medicalised modern cultures render reason and mystery mutually exclusive, define death by disease as failure, and dying as disgraceful. Providers and policymakers alike marginalise ageing and dying individuals, while formulating largely ineffective strategies to prevent deaths from violence or epidemics, terrorism, and famines. Deaths in pain and distress without without palliative care and pain relief, in remote villages and slums, do not compel political attention or budgets. It is palliative care’s mission to demonstrate that each is morally significant, restoring patients’ and families’ quality of life where possible, and attending meticulously to the dying period when necessary.

Palliative care enacts new patterns and algorithms that signify an evolutionary turn. As Sir Julian Huxley noted in his preface to Teilhard de Chardin’s Phenomenon of Man, “Evolution…becomes primarily a psychosocial process, based on the cumulative transmission of experience and its results, and working through an organized system of awareness, a combined operation of knowing, feeling, and willing. [This] gives rise to new patterns of cooperation, new organizations of awareness, new and often wholly unexpected possibilities have been realized.” (Huxley Introduction, Phenomenon of Man, Teillhard de Chardin)

 

Palliative care is one such “new pattern of cooperation and new organisation of awareness.”

Building policy support for palliative care requires presenting it in a positive, albeit instrumental, light: palliative care can be preventive: protecting caregivers and family members against stress induced disease; it can heal: attend to multigenerational wounds and fractures. It can support productivity and participation: basic pain relief and essential services can restore patients’ and families’ autonomy and independence, restoring them to one another and to the community. Policy makers need to see palliative care as an investment, rather than a costly add-on. Developing it will stimulate a palliative culture. A palliative culture privileges presence and accompaniment in the last chapters of life as an honour and a privilege, rather than a burden; as an opportunity for enrichment and spiritual growth of patients, families and caregivers, rather than a dreaded chore assisted dying could take care of.

Lack of palliative care in more than 80% of the world, and lack of palliative care medicines, which contain “narcotic drugs,” has driven what experts call the “global pandemic of untreated pain.” (ESMO Press Release, 9.29. 2012) A palliative culture is halting and slowly reversing this pandemic, whose source is cumulative indifference and ignorance that dates back to the golden age of imperialism. Ending the pandemic, bringing healing to damaged body politics, embodies the structural grace of palliative care praxis, where, holographically, the part contains all the information to change the functioning of the whole.

Each palliative care team at each bedside of each person with a life-limiting illness, prefigures and ushers in the Beloved Community, in a process that resembles stem cell therapy at the heart of healthcare systems. By being person- rather than disease-centered, palliative culture enfolds the marginalised Other into the whole, thereby enhancing the collective emotional intelligence, an evolutionary marker.

The grace that is the health of creatures can only be held in common.

In healing the scattered members come together.

In health the flesh is graced, the holy enters the world.

(“What Are People For,” Wendell Berry)

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Palliative care and spiritual friendship

widow-of-nain

One of the main reasons I am a global advocate for universal palliative care is that palliative care is a unique bio-psycho-social-spiritual approach to serious illness whose practitioners see “spirituality” as an essential element of being with dying. Not being with “the dying” necessarily, but being with dying as a process to which, all life is subject.  Spiritual care includes both providers and patients, and creates provisional communities, or ecclesias of care. Ecclesia originally meaning “those who are called out, or summoned.” Palliative care practitioners are “summoned” to accompany those who are seriously ill, and to alleviate their suffering, physical, emotional, and spiritual.

Moreover, palliative care teams that escort the dying and their loved ones to the frontiers of the unknown, exemplify what ancient and medieval philosophers called the virtue of friendship, or being for the other. Aristotle described friendship as a relationship that wants only the good of the other, for the friend [not for oneself].  In the Christian context, the virtue of friendship, or spiritual friendship, prefigures the friendship with, and of God. Indeed, in the Sufi spiritual tradition, Rumi calls God “the Friend.”

Both secular friendship and friendship with God demand commitment and practice. As the ancients saw it, the virtues had to be practiced in order to take hold in an individual or a community. When I was taking my RCIA (Roman Catholic Initiation for Adults) courses before my baptism several years ago, my teachers told me that friendship with God was like any friendship, requiring dedicated time, maintenance, attentive conversation, etc. And just as human friendships die when those things are neglected rather than nourished, so does friendship with God. Or it just never gets off the ground. The bottom line is that unless we get naked with God, whether in prayer, or in intentional activities embodying service and love of neighbour, we simply can’t think of ourselves as God’s friends.

It seems to me that we can practice for, or rehearse this friendship with God by hanging out and speaking our truth with our friends in this world. Our friends are people who challenge us spiritually, emotionally, and intellectually. They challenge us while loving us for who we are. And by loving them for who they are, we imitate what scripture tells us is God’s love for us. This sort of friendship in the world gives us, or at least gives me, the fortitude to be out in the world and to toil, as Jesus describes it, in the vineyard, one of the metaphors for the kingdom.

Palliative care volunteers, clinical providers, spiritual counselors, and social workers accompany, or escort, patients and families to the frontiers of the kingdom, whatever any of their individual conceptions of that unknown space happen to be. The gospels describe the kingdom as an energetic space where there is no fear. “Fear not” are the two words spoken most authoritatively throughout the New Testament, often by angels, God’s ambassadors.

The kingdom of Jesus’ praxis — he doesn’t just talk about it, he enacts it — is a space where the outsider, the weak, the vulnerable, and the dependent, are accepted and welcomed. It actually invites the seriously ill, weak, paralysed, and actively dying, to enter this space configured and prefigured by the frequencies of committed friendship. Palliative care is a practice, or praxis, of committed friendship, based on truth-telling, courage, and generosity, the other cardinal virtues.

Of course the more secularly minded can take God and the kingdom out of the equation altogether, and make the practice of escorting the dying and their families, both spiritually and clinically, a practice of friendship tout cort. Many palliative care providers I know do that. That would be enough. It is more than enough, given that so much energy is needed for palliative care to take root in the world, and for its potential as an agent of social change to grow and flourish. http://www.who.int/cancer/publications/palliative-care-atlas/en/. Palliative care prefigures the kingdom whether or not its practitioners think of themselves as “spiritual” or religious. It simply emerges from their work.

One of the hardest aspects of friendship is allowing it to go, either when the friend dies, or when the friendship itself dies a natural death. This is the “black river of loss” Mary Oliver talks about and the need to do three things:

to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it
go,
to let it go.

But what about loving the immortal? Practicing friendship, the loving and the letting go, both among ourselves and with our patients and families, brings what Jesus called “the kingdom” to life, and teaches practitioners, through many fits and starts, to be friends of God’s. That is a status I covet, meaning I have a lot of spiritual work still to do!!