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.
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.
“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.
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,
“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,
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.