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: 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.

Children’s Palliative Care and the Feast of the Holy Innocents

December 28, 2017

Today is the Feast Day of the Holy Innocents, commemorating the legendary infanticide by King Herod’s soldiers, in the first century, of all male infants in Bethlehem. According to St. Matthew (2:13-18), Herod ordered the massacre to get rid of the newborn “King of the Jews,” a potential rival. Thanks the intelligence of an angel, the baby Jesus and his family, were spared (for the time being at least), but like so many children today, were forced to become refugees, and fled to Egypt. He was “rescued like a bird from the fowler’s snare,” (Psalm 124).

The other babes (the Innocents) and their parents, were the collateral damage of Herod’s paranoid jealousy and rage. The structural violence of hunger, disease, and war that kills 15.000 children every day, and millions every year, is the modern version of the Massacre of the Holy Innocents. The World Health Organisation statistics are chilling — “under-5 mortality among children born in the poorest households is on average twice that of children born in the wealthiest households. Eliminating this gap between mortality in the poorest and wealthiest households would have saved 2 million lives in 2016.”

Catherine was one of the Holy Innocents who survived the structural violence of lack of essential healthcare until she was eleven, but died at night at home, of renal failure when a tumour (which could have been surgically removed had adequate services been available) blocked her kidneys. Mercifully, Hospice Africa Uganda (HAU) provided her with palliative care and oral morphine to ease her pain and breathlessness. I met Catherine on a home visit in Kampala last time I stayed with Dr. Anne Merriman, founder of HAU, and a former Medical Missionary of Mary.

Dr. Anne, as she is known, is credited with introducing oral morphine to Africa and teaching palliative care providers, mainly registered nurses, to legally prescribe and use it.The HAU team brought Catherine’s family money for food and an old donated wheelchair because she could no longer walk and was confined to the couch. At least the wheelchair would allow her to sit up and go outside, get some fresh air, and see what was going on in the neighbourhood. After all, improving quality of life is what palliative care is all about! With no sidewalks or accessible streets, there was no chance of her being pushed far, though. In order to get to the house, we had to manoeuvre the chair down a very steep hill, which even the hospice car could not descend because it was so filled with deep ruts.

The global need for children’s palliative care is desperate: a recent Lancet Commission Report found that “Every year almost 2·5 million children die with severe health related suffering (SHS) […] in low-income countries at least 93% of child deaths associated with SHS are avoidable…The cost to cover morphine-equivalent pain treatment for all children younger than 15 years with SHS in low-income countries is $1 million per year. This is a pittance compared with the $100 billion a year the world’s governments spend on enforcing global prohibition of drug use.”

Until governments finally end, rather than continue to fund, the structural violence that generates such preventable suffering, and until they make children’s palliative care (along with prevention and treatment) freely available through Universal Health Coverage, every day is a holocaust of the Holy Innocents in slow motion. Today is just a good day to remember that, and recommit ourselves humbly to the work of alleviating the suffering, one patient and family at a time.

Dr. Anne Merriman with Catherine before her death.

Dr. Anne Merriman with Catherine before her death.

Palliative Care and the Parable of the Unjust Judge

The widow begging the judge “who neither feared God nor respected any human being” for a just decision in her case (Luke 18:1-8), reminds me to persist in our what often seems to be fruitless global advocacy for publicly funded palliative care. Luke tells us “for a long time the judge was unwilling, but eventually he thought, ‘while it is true that I neither fear God nor respect any human being, because this widow keeps bothering me I shall deliver a just decision for her lest she finally come and strike me.” The governments are still unwilling to fund palliative care because the people they need to hear from are not bothering them enough!

This week, I am in Geneva with other palliative care advocates, mostly physicians, for a Special Session of the World Health Organisation Executive Board. We are asking the WHO to add a palliative care indicator to the new General Program of Work, to measure whether governments are providing the programs the committed to in a 2014 World Health Assembly Resolution.

Although it’s unlikely the WHO Executive Board delegates fear we’ll strike them, it’s challenging to keep pestering them, to repeat over and over again our message that seems to fall on deaf ears. Maybe their ears will be more open to their own citizens begging them to render a just decision to fund public palliative care programs for the patients and families in their own countries struggling with life limiting illness, poverty, and pain. WHO is focusing on TB right now, and anti-microbial resistance, as well as on cancer and chronic conditions such as diabetes, all conditions that call for community level palliative care.

Most people are used to thinking of palliative care in terms of cancer and end of life, but it is time to inoculate policymakers, as one colleague in El Salvador puts it, with the virus of palliative care for all serious conditions before immanent death. With palliative care people can enjoy their lives and families again; many can continue to work and contribute to society.

When I was in my early twenties, I worked on the Nuclear Freeze, which was considered pie in the sky and a long shot, given that the US and USSR had inter-continental ballistic missiles targeting one another’s major population centers during the Cold War. The Union of Concerned Scientists had set the Doomsday Clock at four minutes to midnight in 1981, meaning they expected the world to blow up at any time. It never occurred to me that I would grow old, let alone have children and grandchildren! This summer, the UN signed a nuclear freeze treaty, and while the world is still not safe from nuclear holocaust, what was once totally outsider language is now mainstream and a common goal.

We need to do the same thing with palliative care. Will it take another forty years and the suffering of millions, abandoned by a medical system bent only on cure, denying strong pain relief to the dying for fear of addiction? True, a broad based, often militant, popular movement demanded that production of nuclear weapons cease: some of my hard core religious friends were sentenced to prison for non-violently resisting the nuclear industry, while top physicians from around the world lent scientific authority to the popular movement. This is what we need now to make palliative care a household word: citizen physicians, academics, nurses, social workers, chaplains, patients and families, all clamoring for publicly funded palliative care.

Perhaps it is easier to dismantle wicked policies such as nuclear deterrence than to build new, more humane, ones such as public health palliative care. To the contemporary, market-oriented sensibility, using public funds to care for the most vulnerable, those who are “useless” — is irrational, an anathema. Yet care for the incurable has been a concern of medicine since ancient times, and is central to both the old and new Testaments. Jesus was even called The Divine Physician. The faithful of all creeds care for the widow and the orphan, the halt and the lame, the hungry and the imprisoned, and of course the sick and dying.

Faith-based and charity funded organisations still provide the lion’s share of hospice and palliative care services in the world, but are a drop in the bucket relative to need. It’s time for governments to start shouldering the load. They won’t, though, until a movement of citizen physicians and patients pesters them to give in, like that persistent widow, my very own role model for the work this week in Geneva.

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)

African Palliative Care and the Ethos of Hospitality

African palliative care, according to Hospice Africa Uganda (HAU) founder Dr. Anne Merriman, is based on an ethos of hospitality, which manifests as a unique blend of indigenous and Benedictine spirituality. This ethos of hospitality resonates in the universal Ugandan greeting, “You are welcome”… welcome into my home, however humble, however grand. The Benedictine strain comes from Dr. Anne, who was a member of the Medical Missionaries of Mary (MMMs), a religious order that lives by the Rule of St. Benedict, which is rooted in welcoming all guests (at the monastery or convent) “as if they were Christ.”

Faith, although not pegged to a specific denomination or spirituality, is coded into the DNA of African palliative care. Hospice Africa begins the day with 5-10 minutes of prayers for students and staff alike: hymns are sung, drums drummed, and announcements made in community before the serious business of tending to the poorest of the poor with life limiting illness begins.

According to Dr. Anne, “in palliative care, we see our relationship to God through our relationship to people. Our prayer is our work: not something we necessarily have to do in a church.” In her orientation talk to new hires, she gives the mustard seed history of Hospice and defines “integrity” as “the virtue of basing action on principles,” the principles of Hospice being to always place the patient and family at the center of our actions in all domains. Quoting Bishop Dowling of South Africa, she says that hospice ethos “reflects how you ´[staff] relate to the patient, family, and community.”

Dr. Anne lives her ethos of hospitality, welcoming the thirty odd members of the incoming class to her house for a party that features speeches, introductions, dancing, great food, and a final candle lighting ceremony, which reminded me of the Easter Saturday vigil service. This universal mass begins with the lighting of the large paschal candle, symbolising the light of the resurrection in the darkness of the world. Indeed, Dr. Anne tells the students that “when we relieve pain, there is a resurrection for that person. In our work, there are many little resurrections before the big one!” Even the cake is decorated with a palliative care prayer, “ Welcome Class of 2017: May you grow in dedication to the suffering.”

Hospice Africa Uganda is the “Mother House” that has spawned palliative care services in more than thirty, mostly sub-Saharan, African countries, growing dedication to the suffering in all the students who come through the doors of the Institute. The current first year class contains students from several remote districts of Uganda, Malawi, Zimbabwe, Kenya, and Botswana. One student, John Bosco RN, came from Adjumani, the site of the largest refugee settlement for people fleeing the conflict in South Sudan, in order to learn to provide palliative care for his patients in the camp health center. Patients diagnosed with cancer and HIV/AIDS have no palliative care except what little is available to both refugees and locals at the overstretched local hospital. His training is supported thanks to the support of Global Partners in Care and the Palliative Care Association of Uganda.

Challenges of African Palliative Care Advocacy

From my perspective as a palliative care advocate in all the UN Organisations, including the Commission on Narcotic Drugs in Vienna, it is sad that the Ugandan diplomats seem unaware of the tremendous leadership their country is taking in this area of healthcare for the most vulnerable and marginalised populations. This leadership is an example of best practice towards implementation of the UNGASS2016 on the World Drug Problem, as well as achievement of several of the Sustainable Development Goals of Agenda 2030. The Ugandan government policies and laws that allow specially trained nurses to prescribe morphine, for instance, are unique in the developing world, and should be showcased.

Uganda could legitimately exercise its bragging rights about palliative care services, citing up to date studies that show the efficacy of nurse prescribing of morphine with no diversion to illicit channels. The international community needs Uganda to serve as beacons to other countries trying to improve access to controlled medicines for palliative care. In biblical terms, the Foreign Affairs ministries of Uganda and Kenya, to name only two of the countries leading in providing access to oral morphine for palliative care and pain relief, are hiding their lights under a bushel — the bushel of their diplomats’ lack of awareness.

Few if any, diplomats serving in Vienna, New York, and Geneva know what palliative care is, and what is required for progress towards this essential service under Universal Health Coverage, a policy priority for the World Health Organization. Once the national and regional palliative care associations make them more aware, the Ugandan missions can share the ethos of African palliative care throughout the UN system, explaining how the African palliative care ethos aligns with the Sustainable Development Goals. leaving no-one behind, and prioritising patients and families in the most vulnerable households. Through its communicative and clinical ethos, palliative care can help households avoid catastrophic out of pocket expenses and avoid the health poverty trap driven by weak public health systems staggering under the burdens of HIV/AIDs and AIDS related cancers.

Dr. Jacinto Amandua, a retired Uganda MoH staffer, cites the challenges of Ugandan palliative care advocacy as the constant rotation of ministers and government officials, few of whom are palliative care literate. He recommends an individual approach “like catechism,” and tells students to “go to where the people are — in the parliament, in the churches.“ Dr. Amandua’s famous and very quotable mission is to make “palliative care as available as air.”

Fortunately, the international normative framework stipulating palliative care and access to pain relief as a human right, is now in place. This international legal framework gives palliative care providers legal cover (a pallium) for their essential work even when national governments change. The challenge of African palliative care organisations is to get governments to pass funded policies to sustain the ethos of hospitality when patient loads increase, as they inevitably will, and charitable donations fluctuate. May the ethos of hospitality migrate to the highest levels of government!

The Dunkirk Miracle and Palliative Care

I came of age in post-WW2, London, still rebuilding from the Blitz — as kids we played in the rubble of the bombed out shells of houses on our block — nourished by the legend of Dunkirk, its David and Goliath dimension, its pulling out all the stops solidarity.

Watching Christopher Nolan’s film “Dunkirk” I identified with the small boats swarming to rescue soldiers on the beaches. Working to establish a global palliative care culture feels a bit like that: engaging with a handful of colleagues in an all hands on deck effort to humanise care for people at the end of life. Setting off unarmed in our small boats in a flotilla to take as many of our fellows as we can aboard and head for home.

Palliative care and hospice units around the world are, almost without exception, nimble operations that barely survive on charity funded shoestrings: the small fry in a big institution, highly professional yet receiving the least recognition. Palliative care providers tend to be those who forgo the limelight in exchange for the privilege of accompanying patients and caregivers through the rough waters of serious illness and dying. In modern societies that stigmatize older age, dying, illness that cannot be cured through heroic healthcare efforts, palliative care practitioners run headlong into the trouble, preparing for the worst as other “healthcare” providers head in the opposite direction, sometimes even blocking their way.

The Dunkirk boat captains saw that event as a high point in their lives, a peak experience, the kind that makes life worth living. When they were in the middle of it though, as the film showed, they had no idea if they would come through; no clue they would succeed in their mission. The miracle was only evident in retrospect. Neither do those of us working to establish a palliative care culture know if we will succeed. We persist because we believe passionately in what we do, and believe that what we do matters, just as the boat captains who set sail for Dunkirk believed in their unlikely mission.

As Mark Rylance’s character said when he refused to obey a shell shocked soldier he had rescued, who ordered him to “go home” rather than continue the mission to Dunkirk, “there will be no home if we don’t do this.” Likewise there will be no home, no decent society, if governments don’t support palliative care programs wherever they are needed.

Our teachers and mentors are, of course, our patients, those who rely on our skill and commitment to have as many quality days as possible in the time left them, even when hope for a “cure” is faint. As a volunteer, I am privileged to accompany dedicated palliative care teams in Uruguay, Kampala, Kerala, Buenos Aires, Minsk, and San Diego to visit patients. I can’t help but imagine how those patients and families’ lives would be without those visits, knowing we are seeing only a handful of those in need. It’s the ones we can’t see, the invisible ones in the shadows, who keep me doing what I do, who send me out in my little boat each and every day, to advocate for global palliative care culture, trusting in the One who calms the waters when necessary.

Ocean’s Bridge

One thing “Dunkirk” does not mention, was that King George VI had called for a National Day of Prayer the day before the rescue mission began. According to columnist John Williams, “In a national broadcast he instructed the people of the UK to turn back to God in a spirit of repentance and plead for Divine help.  Millions of people across the British Isles flocked into churches praying for deliverance and this photograph shows the extraordinary scene outside Westminster Abbey as people queued for prayer.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Two events immediately followed. Firstly, a violent storm arose over the Dunkirk region grounding the Luftwaffe which had been killing thousands on the beaches. And then secondly, a great calm descended on the Channel, the like of which hadn’t been seen for a generation, which allowed hundreds of tiny boats to sail across and rescue 335,000 soldiers, rather than the estimated 20-30,000. From then on people referred to what happened as “the miracle of Dunkirk”.”

Palliative care doesn’t command dramatic, desperate, Days of Prayer and heroic rescue missions. Its miracle is wrought daily, in Ordinary Time, through the countless anonymous acts of compassion provided at the bedside. Their cumulative transformative power will be visible only decades into the future, when palliative culture has taken root and the service is a taken for granted by everyone who needs it anywhere on earth.

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.

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.