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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Palliative Care: the Pearl of Great Price

One reason global palliative care advocacy is so challenging is because it implies systems change. Palliative care is an approach, an ethic, a multi-disciplinary sub-speciality, not just a new element that can be added and stirred into health systems. Palliative care doesn’t accommodate itself to the existing global health ideology, but challenges the ground of that ideology, which is fixated on fixing, on making populations fit to contribute to “development.” From the development perspective, the distinct ethics of palliative care are perverse, claiming the inherent value of each person and family, from fragile neonate to frail elderly, those who don’t contribute to the bottom line.

More subversively still, palliative care advocates request that governments subsidize palliative care as part of the public health system, as a human right, rather than relegating the service to the mercy of charities and private philanthropic organisations.

Needless to say, such absurd petitions fly in the face of rational public policy and budgeting, particularly in this era of “scarcity” and “crisis’.

Why do we stubbornly insist that palliative care is the pearl of great price? Pearls are created once an irritant such as a parasite, or grain of sand — something akin to a splinter — makes its way into the lining of a mollusk or shell. As a defense mechanism, a fluid is used to coat the irritant. Layer upon layer of this coating, called ‘nacre’, is deposited until a lustrous pearl is formed. Palliative care advocates are irritants to systems largely focused on treatment, systems whose organising principle decrees that patients be abandoned when cure is no longer an option.

Palliative care invites us to explore areas of life beyond strict utility, as defined by ordinary standards in society, and the ultimate limits of life. Such exploration is only possible if we recognise there can be great value in what is not useful (Vanistendael 2007) How can what is not useful be valuable, and how can palliative care nurture that value, pouring layer upon layer of coating/care/pallium, on the suffering of patients and families, to produce a pearl of great price that can actually support the sustainable development of communities and nations?

The distinct social physics of palliative care dis-place vulnerable individuals from the margins to the center of public policy, shifting the political center of gravity from a rationality of control and domination of the body and its diseases, to one of accompaniment and equality in vulnerability. In political terms, this shift represents the evolution from an oligarchic monopoly of knowledge/power towards a radically democratic and cooperative logic that can live into the questions, to paraphrase Rilke, because they are lived in common.

Palliative care is the stance of being comfortable with the unknown, a stance that leads to the development of confidence, resilience, and empowerment in patients and families receiving the best care. The fact that we are all vulnerable, all subject to suffering, old age, and death, makes strategies of avoidance through domination and control both futile and painful for all parties, particularly those outcast by serious illness. An individual’s, family’s, community’s, capacity to embrace the unknown is transformative and evolutionary, and can be expressed as the classical political virtues of magnanimity, honesty, courage, and friendship. These virtues buttress resilience and sustainable development.

The meta-ethic of palliative care aligns with Jesuit priest and paleontologist Pierre Teilhard de Chardin’s definition of evolution: the process whereby the universe becomes conscious of itself. Indeed, palliative care is a discipline that demands its practitioners become conscious of themselves in order that they may be properly vulnerable to the vulnerability of the other. By definition, becoming conscious of oneself requires the courage to be with, to live into the truth of suffering, no matter how unpalatable or dis-grace-ful. Only then can pathology be transformed, alchemized, healed by grace, etymologically related to gratitude for Being itself.

The universe only becomes conscious of itself through unmediated and intimate encounters with its bare heart, which reveals itself in the particular, the actual, the enfleshed – not the ideal or abstract –being of the suffering other. Such is the global pandemic of untreated pain, the collective being of the suffering other that is our own self. Approached with courage, friendship, and honesty, the shared pain is transformed and eventually healed.

This is the pearl of great price that is palliative care.

Palliative Care: An Evolutionary Turn in Dark Times

The English word “palliative” derives from the Latin palliare, or “cloak”. Palliative care teams, manage the bio-psycho-social and spiritual suffering of patients and their families facing serious illness and end of life by “cloaking,” or alleviating it with evidence based care. The severe pain experienced by such patients is often a complex synergy of physical, emotional, spiritual, and social issues that few modern medical students who do not study palliative care are trained to address or treat.
Where palliative care is taught as part of the professional curriculum, it graduates palliative care teams that include specially trained doctors, nurses, pharmacists, social workers, and spiritual care advisors. They are trained to address these dimensions of severe pain, providing care beyond cure, as necessary. They take up the slack when doctors’ trained to treat  the disease rather than the patient, concede “there is no more we can do.” Palliative care is always the “more” that is available to patients and families.

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

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.

Snake_skin_coil

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!