Palliative care in Panama City: Visit with Monsignor Mirosław Adamczyk, Papal Nuncio, Feb. 13 2019

When the Representative of the Holy See in Panama City, Monsignor Mirosław Adamczyk, exclaims, “The price of medicines here in Panama is scandalously high! Higher than any the countries I have ever been assigned to,” he is echoing his boss, Pope Francis, who has often expressed his concern for the health of his flock, including most recently on World Day of the Sick. As a pastor who respects the universal right to health, the Monsignor was upset by the fact that the high prices mean medicines are unavailable to the poorest of the poor — those not covered by social security.

This Holy See attitude is aligned with the World Health Organisation, which takes a rights based approach to the price of essential medicines and seeks to balance the profit seeking role of the pharmaceutical companies against peoples’ need for basic healthcare. Luckily our visit came at a relatively quiet time, after the papal visit for World Youth Day. I was in the country for the Ministry of Health sponsored Central American Launch of the Lancet Report on Pain and Palliative Care, and to accompany teams on home visits in rural areas. (See my previous blog on Aguadulce).

The Pontifical Academy for Life (APV) in Rome had notified Monsignor Adamczyk that I was coming to Panama for the Lancet event and would like to brief him at his convenience on the Pal-Life program. Our delegation to the Nunciate, showed in the photo below, comprised (left to right) Dr. Tania Pastrana, President of the Latin American Association of Palliative Care (ACLP), Dr. Irena Etcheverry, director of Hospice Madre Teresa, in Luján, Argentina, Professor Myrna McLaughlin-Anderson, Senior Advisor, Ministry of Health, myself, and Dr. Nisa Camaño, Coordinator of PC for the Caja de Seguridad Social in Panama, and President of the Panamanian Society for Hospice and Palliative Care.

It turns out that Mons. Adamczyk, unlike many of the Nuncios I have called on in my travels, knows quite a bit about palliative care, coming as he does originally from Gdansk, home to several hospices. He cited the obligation to care for the sick as though they were the body of Christ, quoting Matthew 25: “when I was sick you visited me.” Another big one for me is, “when I was imprisoned you visited me.” Father Piotr Krakowiak founded a pioneering prison hospice program in Gdansk, teaching inmates to care for one another during their last days.

Monsignor insisted during our conversation, on the importance of the presence of a compassionate pastor throughout the illness and bereavement processes. He was sensitive to the pain of family members who felt guilty and abandoned when the person they had been caring for died, especially when the death had been distressing.

The Nuncio had witnessed this grief first hand in Venezuela, where few priests could be found to comfort the bereaved in public hospitals. Our discussion on the vacuum of compassion in certain healthcare systems also touched on euthanasia and the untimely death of a friend of his in Belgium who requested and received euthanasia after a cancer diagnosis. Apparently it costs EUR48 to fill a euthanasia prescription at the pharmacy.

Sheila Lichacz

We agreed that the fight for a right to palliative care is taking place in the shadow of growing public support for euthanasia and medically assisted dying. The Nuncio expressed support for the idea of a hospice in Panama City, and agreed to remain in contact with Professor Myrna McLaughlin-Anderson, palliative care chargé in the Ministry of Health.

After our lengthy conversation, the Monsignor took us on a tour of the public rooms, showcasing works of art selected to reflect the talent of this tiny, but mighty country.

Sheila Lichacz

The altar in the Chapel (“after all it’s His house!” declared Monsignor before showing us around) is simple and elegant, the door to the ciborium being designed to unroll like the stone from the tomb.

 

Palliative Care: A Life- And Choice-Affirming Alternative For Patients And Families Facing Serious Illness

Newsflash: Medially assisted dying and euthanasia are not the only options for patients facing life-limiting illnesses and serious pain. Nor are endless treatments with inconclusive or non-beneficial results, which might cost patients and families their life savings. There is another choice that aligns better with many individual and cultural values and aspirations for quality of life: palliative care.

Palliative care covers many bases. It affirms life and supports the dignity of patients until natural death. It provides services to families of all kinds and caregivers of choice, including through bereavement, and it preserves personal autonomy. Mainstreamed under universal health coverage, palliative care is the penultimate “both/and” for patients and families facing life limiting illness. Medical science and public health have created the modern, wealth induced, dilemma of mass longevity. Have we really evolved to the point that the demos (body of voters) feels it has to legalize medical killing as the only “liberty” option to resolve the inevitable pain and suffering of extended mortality?

Palliative care is a modern, secular practice, not a religious or denominational approach, although it provides spiritual care if desired. Its ethos based on life, dignity, and family, is grounded in the human rights movement, whose cornerstone document is the Universal Declaration of Human Rights. Palliative care can lay claim to all the foundational concepts in that covenant, which is why many human rights experts now call palliative care a human right for all patients facing serious illness, from neonates to the frail elderly. It is stipulated as a right in the 2015 Inter-American Convention on Protecting the Rights of Older Persons, as well as the brand new Constitution of Mexico City.

The term pro-life can be reclaimed and applied to palliative care, because it “affirms life and regards dying as a normal process” according to the World Health Organisation definition. We can also re-appropriate the term “pro-family,” because palliative care teams support all family configurations, and “offers a support system to help loved ones and caregivers cope during the patient’s illness and during their own bereavement,” also according to the WHO definition.

While we are at it, let’s also reclaim the term “pro-choice” because, when properly mainstreamed in a health system, palliative care gives patients and families a real choice about whether to continue treatment that may be non-beneficial. Where assisted dying and euthanasia are legal, palliative care gives patients a real choice concerning whether to not to end their lives. In fact palliative care allows patients to plant, prune, and harvest their own unique Decision Tree of Life together with the community of their choice.

Palliative care is pro-dignity because it supports autonomy, which is undermined, and cannot be effectively operationalized when the only available options are futile treatment, abandonment (“there’s nothing more we can do”), or legalized assisted dying. Autonomy in any meaningful sense exists only in the context of real choice. Palliative care represents the via media, the middle way that allows patients and families to steer a customized course between the treacherous shoals of futile treatment, medical abandonment, and assisted dying.

The media are full of heartfelt cries (cris de coeur) in favor of legalizing medically assisted dying, of patients and families sharing excruciating stories of being condemned to suffer severe pain and multiple indignities by callous politicians, doctors, and religious fanatics. They have a point, given that too few families and communities have access to quality, affordable palliative care. Stories about patients and families helped in their final months, days, years by palliative care teams are far and few between, no matter that they number in the tens of thousands, and can be told be providers and patients all over the world. But medically assisted dying will continue to gain political traction and social acceptance in modern democratic cultures led by public opinion, until patients, providers and families are as effectively vocal for palliative care as their counterparts for assisted dying.

Ensuring that palliative care is available as air, in the words of the inimitable Ugandan advocate Dr. Jacinto Amandua, means the palliative care community must get our political ducks in a row, something clinicians are rarely willing to do. Palliative care folks must stride purposefully out of their comfort zones to make the necessary alliances with non-medical professional colleagues. Patients’ stories have to get published, policies drafted, budget lines funded, and the providers educated and accredited.

What’s not to like about such a modern, evidence based, pro-life, pro-choice, pro-family, pro-dignity, and pro-autonomy healthcare option that’s not against anyone, and sees no other movement as “the enemy”? Palliative care’s only mission is to provide impeccable clinical, spiritual, social, and existential support and affirmation at the most vulnerable, sacred, fearful, and stressful time imaginable. It’s past time to take palliative are to the demos, where it belongs.

Sótéria (Σωτηρία): A philosophical take on policies to hasten dying

Most palliative care folks know that the word “palliative” derives from “palliare” or “cloak.” I just learned that the original “pallium” was the cloak worn by ancient philosophers, some of whom, like Hypatia, were women. These philosophers wrote about the ethics and justice of “the political” — the nature of life in common — because they knew that the quality of political life is directly related the sustainability and safety (sótéria) of the demos, or the people. In Greek mythology, Sótéria (Σωτηρία) was the goddess of safety and salvation, deliverance, and preservation from harm. From the philosopher’s perspective, policies to hasten dying or mainstream assisted suicide endanger the long term safety and health (also etymologically related to salve) of the polity. The alternative is palliative care, a form of slow medicine, which like the slow food movement reflects a contemplative, sustainable, whole-person approach that challenges whole-society addictions to non-person centered values such as efficiency and profit. In founder Dr. Dennis McCoullough’s words, “Slow medicine is not a plan for getting ready to die. It is a plan for understanding, for caring, and for living well in the time that is left.”

The problem for commodified, “anti-ageing” and ageist cultures, is that dying of cancer or chronic disease is time-consuming, expensive, and inefficient, in other words, an anathema to the modern, rights-conscious individual. Adding insult to injury, physical decline, particularly when combined with dementia, tends to be undignified, inconvenient, and often terrifying for both patients and caregivers. “Death with dignity” presents a cost-effective and painless solution to all concerned. What’s not to like about a practice that will keep the ever-increasing population of older persons suffering from multiple conditions from falling through the yawning cracks of healthcare systems that are not fit for purpose?

anti ageing

The palliative care and assisted suicide movements are distant cousins, both conceived in response to disease-centred health care systems that benefit industry rather than individuals or communities. Slow medicine can’t compete with hastened dying’s seductive promise to help patients check out as fast and painlessly as possible, though. The medical community worldwide is well and truly split over whether the state should regulate professional participation in patients’ and relatives’ requests for hastened death, with the organised palliative care movement largely recommending that governments ensure palliative care is widely available before  authorising physician assisted suicide. Integration of palliative care into health care systems, though, requires policymakers to engage in cost-benefit analyses that don’t necessarily favour slow medicine. The assisted suicide movement on the other hand has the cultural wind in its sails, and almost no political opposition, even though recent studies show that the need for suicide, or even killing on request due to (physical) suffering in palliative patients drops towards zero when care is provided by qualified personnel.

The sótéria lens show us though that, once extended to a rule, a compassionate choice in an individual case institutionalises the original system deficits that inspired the private decision to request hastened death. (Read it again.) Put differently, the political stakes of normalising assisted suicide policies are high for societies wanting to build person-centered healthcare systems. Policies that entrench medically hastened death as a “compassionate choice” are actually entrenching indifference to families struggling with inappropriate care as they attempt to maintain the value and dignity of human life until its natural end.

Normalising physician assisted suicide de facto ratifies modern individualist ideologies, system failures, and the family/community disintegration characteristic of globalised neoliberal societies. Rather than a epitomising an evolutionary success story, “Dignity in Dying” memorialises the catastrophic failure of modernity to include the marginalised and undignified in its many success stories. Citizens who would rather die than see their living through with palliative care, deny the irreducible relationality of humanity. GK Chesterton nails it when he writes in The Flag of the World, “The man who kills a man, kills a man. The man who kills himself, kills all men; as far as he is concerned, he wipes out the world. The suicide […] insults every flower by refusing to live for its sake” — born of ego and pride, an over-emphasis on self rather than the rest of reality.”

Tragically, this secular culture of death, like a plague of ticks, has already burrowed too deep into decadent, superficially successful societies of the strong, those who have already enjoyed their day in the sun. Individuals who request others to assist their suicide rather than supporting policies to mainstream palliative care, are guilty only of personalising the normative nihilism that characterises western modernity.

Palliative care, as the “slow medicine” that helps patients, families, and communities carry the burden of terminal illness together, living with acceptable quality until natural death, challenges the mistaken perception that the ancient philosopher’s pallium is irrelevant to the modern age. In its vocation to relieve pain and distress, rather than to extinguish the person, palliative care dignifies the weakest among us, and ensures the sustainability and safety, the sótéria, the salvation, of the demos.