The Advent of Palliative Care

The Advent of Palliative Care

On that day  I will gather the lame, and I will assemble the outcasts, and those whom I have afflicted. I will make of the lame a remnant, and of the weak a strong nation.  Micah 4:6-7

Palliative care makes of the weak a strong nation by gathering those who are cast out of the high stakes game of modern life, in which only the fit and un-afflicted can participate successfully, and placing them beneath the pallium, or cloak, of meticulous clinical, psycho-social and spiritual care. That cloak of attention and accompaniment dissolves the “structures of sin” that configure the sufferings of poverty, pain, disability, and stigma, replacing them with resilient structures of grace and solidarity.  The hands that are feeble are strengthened, the knees that are weak made firm, and those whose hearts are frightened hear the comforting words, we are with you: “Be strong, fear not.”  (Isaiah 35).

Structures of sin are those policies and institutions Catholic social teachings describe as producing injustice, such as the inequity in global palliative care provision that afflicts more than 70% of the world’s population. Social (as opposed to personal) sin, is defined as “sins of commission or omission-on the part of political [..] leaders who, though in a position to do so, do not work diligently and wisely for the improvement and transformation of society according to the requirements and potential of the given historic moment.” (Reconciliatio et paenitentia

The given historic moment we have arrived at now is one wherein political leaders and the medical profession have all the legal, clinical, and pharmaceutical tools they needs to relieve preventable health related suffering.  The development of palliative care in the last half century provides the opportunity to develop the necessary policies — to make the rough ground experienced by so many patients and families become a plain, and the rugged terrain of illness they struggle through, a broad valley (Isaiah 40:4).  

The Advent message of palliative care calls those immersed in social sin, to repentance, or metanoia, a change of heart that will enable them to develop publicly funded palliative care policies to relieve the suffering of all those in need. This message challenges the modern neo-liberal narrative that those who have lost social, political and economic agency through life-limiting illness, are not worth investing in.

The agency of the remnant honored by palliative care with clinical, psycho-social and spiritual services to strengthen them for the journey, is a collective voice crying out in the wilderness, calling health and pharma-industrial systems that invest only in cure at any cost, to take wider perspective that perceives the suffering of others as potentially their own. “Those who err in spirit shall acquire understanding, and those who find fault shall receive instruction.” (Isaiah 29)  This is agency in the truest sense.

Palliative care is prophetic, not profitable or prestigious, although the evidence does show that palliative care services save money by preventing unnecessary hospitalisations and what economists call “downstream spend.” Palliative care’s ethic of meticulous attention and inclusion erases the margins and categories of otherness, patient by patient, family by family, embodying the Beloved Community, in Dr. King’s words, to make each patient’s and family’s world a better place for as long as possible. It heals and strengthens the body politic in the same way stem cell therapy heals broken limbs and diseased organs. It makes straight the way of the Lord. 

Palliative Care in Peru, El Salvador, and Guatemala — The Medicine of the Poor

I just returned to the US from an all too brief work trip to Peru, El Salvador, and Guatemala. I had the tremendous privilege of accompanying palliative care physicians, nurses, and volunteers who provide services to the poorest of the poor in their countries, patients would otherwise die terribly, in squalid conditions with no pain relief and little family support. See the recent Lancet Commission on Palliative Care Report for the unmet global need and policy recommendations for an Essential Palliative Care Package.
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My visits to the public hospitals and faith based hospices triggered memories of the Latin American liberation theology that had so influenced me three decades ago. It dawned on me that palliative care, like the gospels, is the medicine of the poor. Providing palliative care in resource challenged countries, demonstrates a “preferential option for the poor.” It serves those who are both poor in material wealth, and those who are poor in spirit. It is all that’s left to people who are suffering and in severe physical, social, existential and spiritual pain when curative options have run out, or were never an option. It is sabbath healing that defies the biomedical law of cure at any cost.

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“It is the poor who tell us what the “polis,” what the city is”,
Speech, Monsignor Romero, Louvain, 1980.

The polis (Etym Greek) is the city, or the political community. The poor tell us that the polis must include palliative care as an essential public service, a service that should be integrated into government funded Universal Health Coverage. Providing it publicly, rather than privately through charity to a tiny minority, will save many who are already poor from falling deeper into the medical poverty trap from out-of-pocket expenses for costly, futile treatments. Publicly subsidised, low cost, community based palliative care could save governments millions of dollars in medicines, medical devices, and hospital costs.

Hospital Divina Providencia — San Salvador
“The Church exists to act in solidarity with the hopes and with the joys, with the anxieties and with the sorrows, of men and women,” said Monsignor Romero. The words “Palliative care could be substituted for “The Church” in this sentence. Monsignor Romero is resurrected in the work of the Hospital la Divina Providencia, in whose chapel he was assassinated by paramilitary forces in 1981 while celebrating mass. Divina Providencia as it is known, was founded by Carmelite nuns, and now runs under the leadership of Hermana Maria Julia.IMG_9399

Divina Providencia is the only hospice in San Salvador that provides palliative care at no charge to indigent patients and families from all over the country. One of the things that touched me deeply was the patience (etym — suffering) and endurance of family members who wait day in day out by the bedsides of their loved ones, sleeping beside them in the curtained cubicles. The caregivers have come by bus or taxi at great expense from far away villages, to accompany their loved ones in San Salvador. Mothers leave younger children behind in the care of an older sibling, often in rural zones subject to ongoing violence, to care for a hospitalised brother or husband. Already destitute, the lucky ones are supported financially by local evangelical churches, charities, or the municipalities of their towns of origin.

“Palliative care allows us to provide our patients with quality of life to the end. We support the family members who suffer alongside the patient. We suffer and weep with them. We know that it is not an easy task, but God gives us the grace and strength to continue.”
Madre Maria Julio, Director General Divina Providencia

Hospicio Fondación Ammar Ayudando
The hospice I visited in Guatemala was Fondación Ammar Ayudando, for children with life-limiting illnesses. It offers high quality clinical services, medications, food, and a comfortable room to indigent patients and families free of charge, in order to provide them with the most dignified death possible. Ammar Ayudando’s founder, architect Myriam Ramos, aims to provide loving, compassionate, effective, and professional care for the patients she finds at the public hospitals who otherwise would be sent home, told the staff could do nothing more. Given the lack of preventive and curative care in the public system, which according to colleagues who work on the ground, is “collapsing,” palliative care is indeed the only option for patients with no access to prevention, cure, or rehabilitation. Myriam’s work is entirely voluntary and based on donations. She gets more from her patients than she gives though, saying,
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“God created humans so miraculously that the spiritual core, which normally does not show up until adolescence, emerges prematurely in dying children, to compensate for the loss of physical capacity. Dying children are old, wise souls. They are much wiser than healthy, over-protected children.”

When I asked Myriam how she gets the funds to run the hospice, she raises her eyes to indicate constant (and productive) “knocking on Heaven’s Door.” Government funds come only indirectly, such as a check she received recently from a businessman who owed back taxes. The judge directed he pay Ammar Ayudando the (hefty!) penalty.

Hospital de Niños Benjamin Bloom is the only pediatric referral hospital in El Salvador that provides free palliative care to indigent children and families, in a hospital, rather than social model, setting. Founded in 2010 by Dr. Rolando Arturo Larín, the palliative care service is also blessed with hundreds of passionate volunteers of all ages and education levels. Children whose palliative care needs are met often live much longer than adults. Their lives, and those of their families, benefit immeasurably from palliative care services,
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The ideology of biomedicine
The ideology of modern biomedicine, which influences global health ideology, focuses on prevention, treatment, and cure of disease in order to ensure maximum healthy participation in the market. Commercialised biomedicine supports ever growing markets for medical devices and pharmaceutical products, all of which are available at a cost, either to the individual consumer of healthcare, or to governments that cover treatment of chronic and communicable diseases. If they do not, only patients with access to funds can purchase healthcare; those without cannot. Public funds are rarely available for palliative care patients, since they have little to offer either the market or the government (through taxes).

Transactional market logic undercuts arguments to support patients whose productivity is low or non-existent, with public funds. Faith logic, however, which is based on the principles of gift and mercy, supports patients suffering from life-limiting illness through the donation of resources. These services are a drop in the bucket of need, though, resulting in a “suffering gap” in countries where the poor have no access to private healthcare markets and public health systems are weak or collapsing. Faith-based and charity funded organisations have taken it upon themselves to provide hospice and palliative care services to patients outside, or on the margins of healthcare systems. Their non-marketability fits the rationality of the Kingdom, which invites all, particularly the poor, the halt, and the lame — those who cannot reciprocate with a party invitation of their own — to enter and receive care.

Palliative care is the medicine of the poor because those with few material resources have little or no access to functioning healthcare systems that allow them to prevent, diagnose, or treat the illnesses that end up taking their lives, at much younger ages than their counterparts in the wealthy countries. Charity funded palliative care is the medicine of the poor that offers a relatively pain free and dignified death, one that brings peace to patients, families, and providers. In resource rich countries, where the palliative care’s team approach offers relief for psycho-social and spiritual, as well as physical pain, it is the medicine of the poor in spirit. As the costs of medicines and treatments for life limiting illnesses cripple both individual households, and public health systems, it will be key, as the Lancet Commission Report emphasises, to ensure the inclusion of palliative care services under Universal Health Coverage.The target population includes palliative patients and their caregivers.

Universal Health Coverage takes a person-centered public health perspective. The optic is also to maximise productivity, but from the perspective of the public, rather than the private, good — the wellbeing of the population, rather than the wellbeing of individuals or elites. Integrating basic palliative care services into the public health system reduces costs (of hospitalisations and purchase of futile medical device and pharmaceutical consumption), and reduces stress-based co-morbidities (such as heart disease and depression) in caregivers. Governments that have an interest in reducing red ink and increasing investment for the public good, will fund palliative care, demonstrating financial prudence, civic virtue, leadership, courage, and transparency. These governments will respond to advocacy that serves the needs of their populations who are beyond the reach of cure. The faith based organisations, which have been doing the work for decades, embodying the classical political virtues of courage, friendship, honesty and magnanimity, can show them the way. IMG_9389

Drug Policy, Faith and Vulnerability: Salt and Light

A meditation on drug policy and the Word: security, vulnerability, and light. 

Katherine Irene Pettus, PhD 

If you remove from your midst / oppression… then light shall rise for you in the darkness, / and the gloom shall become for you like midday.

 Isaiah 58:7-10

I came to you in weakness and fear and much trembling, and my message and my proclamation were not with persuasive words of wisdom, but with a demonstration of Spirit and power, so that your faith might rest not on human wisdom but on the power of God.

I. Corinthians 2:1-5

Much of the talk about “drug policy” in local, national, and international circles I move in focuses on the concept of “security” and indeed, much of drug policy is now “securitized” – meaning that politicians connect the threat of “drugs” with threats to national security, combating it with increased law enforcement funding and intelligence services.  The rationale is that drugs not only threaten individual and public health, but that trafficking and money laundering destabilize good governance, sustainable development, human rights, etc.

There is no doubt that many individuals, families, and communities experience the very negative and often tragic effects of illegal drug use and trafficking. My family is only one of the millions suffering the effects of prohibition and mass incarceration.  The question, though, is whether it is “drugs” themselves – the plants and pharmaceutical preparations that cause narcotic effects, that are the problem, or the fact that they are illegal and therefore unregulated. By definition, their illegality puts the drug economy in the hands of criminals and international criminal networks. People who use drugs, whether for pleasure, because they are “dependent,” or are “addicted” must then also participate in criminal networks, often at the cost of their health and their lives.

What on earth, or in heaven’s name, you might be wondering, might this have to do with faith, or with religion, or even today’s readings?  A lot.  The oppression Isaiah names, which must be removed, is the illegality and stigma that accompanies drug use.  That oppression brands people who use drugs as outsiders, as separate, or unholy, and is reminiscent of the illegality, ostracism, and repulsion that branded the lepers and “demoniacs” Jesus healed from his compassion.  Purity laws, whether Talmudic, Christian, or secular (in the form of drug prohibition) by definition separate people considered ‘unclean’ from the body of Christ and the Kingdom.  Jesus very intentionally turned those laws upside down when he touched the ‘impure’: bleeding women and sex workers, paraplegics, schizophrenics, the dying, and even the dead.  It seems self evident that, as Isaiah said, and Jesus demonstrated, removing oppression from our midst brings light.

Paul’s disarming admission of weakness, which he (counter) intuitively understands as Power, combines two apparent opposites that generate the paradoxical resource of vulnerability. This universal, incredibly uncomfortable, aspect of the human condition, makes us shriek as infants, and use substances or activities (alcohol, coffee, tobacco, sex, shopping, or narcotics] as young people and adults. Paul’s letter puts us on notice that our search for the (individual or collective) security that temporarily offsets our vulnerability is futile. As one who oppressed the vulnerable himself – Saul, Saul why do you persecute me? –would have rung in his ears through his dying moments, Paul learned at a molecular level on the road to Damascus that the current of Power only flows through the fabric of utter defenselessness.

Jesus tells the disciples that we are the salt of the earth and the light of the world, a light that must not be hidden. Apparently speaking in riddles, he asks what salt can be seasoned with once it loses its taste.  His/our vulnerability is our saltiness: even our tears are salty, and the moment we try to armor ourselves against the “weakness, fear, and much trembling” Paul describes, by scapegoating and sacrificing others, we lose our savor and dim our inherent and collective radiance.   Societies that support rather than punish vulnerable people who use drugs are more resilient and have better public heeclipsealth outcomes than those that try to stamp them out in the futile effort to create a “drug free society”.

The apparent power of the state (us) to criminalize drug use only empowers traffickers, police, and prison guards. Admitting and sharing our individual and collective defenselessness in the face of our very human desire to alter our consciousness, paradoxically returns to us the power to remove oppression, casting a very different light on the “drug problem” and allowing us to begin resolving it together, in the parliament of the Kingdom that admits of no outsiders.

Katherine Pettus, PhD is an independent scholar and consultant who represents the International Association for Hospice and Palliative Care as an NGO at the Commission on Narcotic Drugs in Vienna.  She is also a convert to the Roman Catholic faith and a member of the English community of Sacred Heart church in Budapest.