Palliative care for Papua New Guinea: A profile of Sister Tarcisia Hunhoff for World Day of the Sick, 2017

February 20, 2017

World Day of the Sick is a Feast Day of the Roman Catholic Church, instituted by Pope John Paul II in 1992 at Lourdes. In 2007, Pope Benedict XVI used the occasion to call for more palliative care for the sick and the dying. Sr. Tarcisia Hunhoff, a member of the Missionary Sisters, Servants of the Holy Spirit, has heeded that call, and having “retired” after her 80th birthday, will be setting up the first palliative care center in Port Moresby.

Sr. Tarcisia’s religious order has been in PNG since the turn of the 20th century, and she has worked there since 1960. When the HIV epidemic exploded in the early 2000’s, she devoted herself to the counselling, testing, training of health care workers throughout the country, traveling several times to Africa to learn about how countries there were handling the epidemic.

A former Dutch, German, British, and then Australian colony with an active slave trade during the late nineteenth century, Papua New Guinea has the highest rates of HIV infection in the region, with escalating rates of TB, HCV and sexually transmitted infections. These public health issues flourish in a post-colonial society plagued by gender based violence, teen pregnancy, and a poor healthcare system. Sr. Tarcisia says, “That’s the situation in a nutshell. It is quite as distressing as it sounds.”

Like young people everywhere, PNG youngsters are searching for a better life, especially in Port Moresby, the capitol, which like many modern cities, is a magnet for urban drift marked by social disintegration. Sr. Tarcisia says, “We find our HIV/TB patients, often totally neglected and left alone to die, in the city and its outskirts. Catholic Health Care Services provides counselling, testing, and ART for over 70,000 clients a year, and has a very effective mother-to-child prevention program.”

Yet with so much life limiting illness, PNG has no palliative care facility. Palliative care, a relatively new medical specialty that seeks to improve the quality of life of patients and families with serious illness, was almost unheard of until Sr. Tarcisia approached the Department of Health with this new idea for total care. Palliative care includes pain and symptom relief, as well as social and spiritual support when cure is no longer an option. She says, “The idea for the proposed Palliative Care Centre in Port Moresby grew out of utter distress of being unable to do what needs to be done for these neglected and stigmatised human beings, lying on the floor in a corner with no basic care.”

It has taken her some years to get started with the new building, called “ The Supportive Living Project,” because of the cultural belief in evil Sprits of the Dead, which is still very strong in PNG. The Australian Government has provided AUS $3.5 million for construction, and the PNG Department of Health will finance staff salaries and clinical supplies. Building Board permission is in the pipeline and expected any time.

Sr. Tarcisia says, “I consider this my last project since I have passed my 80th Birthday. I can only hope and pray that the Centre will be a model program, and that palliative care receives the emphasis and the finances it needs. Asked about palliative care and faith, she responds: “serving the poor has been a very rich experience for me personally. One receives more as one gives. I also hope it makes it clear to our simple people what Christianity is all about. Pope Francis is a strong advocate and knows from experience what it means to live in a desperate situation.”

I would like to thank you for promoting total care, especially to the poor and underprivileged.

Best wishes and God bless, Sr. Tarcisia, Hunhoff SSPS.

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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 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

Being Fully Alive at the End of Life

 

Today is the Feast Day of St. Ireneus, whose most famous statement was, ‘the Glory of God is the human being fully alive.”  How does this relate to End of Life (EOL) Care? Is a fully alive human being one who stays alive for as long as possible, extending bodily life indefinitely with chemicals, and machines, tubes hooked up to every orifice? I think not. Fully alive means attending to the life of the spirit as well as the body, and as St. Augustine said in sermon 127, “If so much care and labor then is spent on gaining a little additional length of life, how ought we to strive after life eternal?” 

As populations age all over the world, and people live longer with more chronic conditions such as heart disease, cancer, diabetes, stroke, etc. churches face the wonderful challenge of reminding parishioners that the life of the spirit can be cultivated when a person is diagnosed with a life limiting illness, and that palliative care must always include spiritual care, or it is not truly palliative care. The root word of “palliative” is “pallium”, which denotes the wool cloak the Pope places on the shoulders of a bishop to remind him to care for his sheep. The Pallium Niche in the vault of St. Peter’s Basilica in Rome contains the wool woven by nuns from the sheep raised at Vatican farms.Conf-Pallium-cm 

Spiritual distress toward the end of life is often profound, both for believers and non-believers, and clinicians need to learn to recognise it so that they can bring in a spiritual care professional or member of the clergy, if requested, to counsel patients and caregivers when the end is near.

A newly published study in the Journal of Palliative Medicine showed that clergy had “poor knowledge of EOL care, and that 75% desired more EOL training…Clergy described ambivalence about, and a passive approach to, counseling congregants about decision making despite having defined beliefs regarding EOL care.”  The study concluded that “poor knowledge of EOL care,” and I would add of the teachings of the church re palliative care, “may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.”

The good news is that focused education by trained practitioners can overcome ambivalence, passivity, and poor knowledge of EOL care. The bad news is that pursuing non-beneficial treatments exacerbates the physical, socio-economic, and spiritual distress of patients and families. Instructing doctors and nurses to “do everything possible” to keep a patient alive runs counter to the Catechism of the Catholic Church, which teaches that “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment.”  (2278)

The key words are “non-beneficial, burdensome, and disproportionate to the expected outcome.” The family, patient, and palliative care team, including the spiritual care provider, need to know how to unpack what those terms mean for that particular patient and family, preferably before a crisis, not during one, when people are in the rough waves and chaos of active dying.  

Human beings nearing death can also, paradoxically, be fully alive, and as many hospice doctors, nurses, volunteers, and caregivers who have attended the dying can attest, they are often at their most luminous and alive when supported by good palliative care, which includes pain relief as well as confident spiritual counseling.  Happy Feast Day!

 

 

Palliative Care: Slow Medicine in the Spring

While it is now common knowledge among palliative care folks that the word “palliative” derives from “palliare” or “cloak,” I had not realised that its origins are the wool pallium worn by ancient philosophers, and that the Christian tradition of the papal pallium derives from St. Martin cutting his cloak in half with his sword and giving it to the naked beggar by the roadside.stmartin3

  Monsignor Vincenzo Paglia, President of the Pontifical Academy for Life, said at a Vatican conference on palliative care last week, “when Saint Martin donated his cloak, it was cold, it was the winter, but for the poor person he gave it to, it was spring, because he was surrounded by love and tenderness.  Palliative care will help the world find a new spring.”

A commercial culture that is militantly “anti-ageing” and ageist must also be anti-dying, which in these high tech times is undignified, inconvenient and burdensome to both the patient and caregivers. Being anti-dying is not the same as being anti-death though, as the “death with dignity” folks are instructing us. Individual patients’ refusal or unwillingness to tolerate the prolonged dying characteristic of modernity directly reflects the institutional deficits of health systems’ inability to care for them in a way that aligns with their individualistic values.  Featured-Image-DIY-Anti-Aging-Cream-Serums

Healthcare systems designed to care for patients suffering from traumatic injuries, infectious diseases, and conditions requiring surgery and intensive care are now being overwhelmed by growing numbers of older persons suffering from multiple chronic conditions that persist for years, if not decades. Rather than fall through the multiplying cracks, many  of these folks would rather physicians spared them the harrowing  journey by hastening their deaths.

The medical community is well and truly split over whether the state should regulate healthcare professional participation in suicide. The organised palliative care movement largely recommends governments ensure that that palliative care is widely available before  authorising physician assisted suicide.

But it is not in palliative care’s nature to be oppositional, and providers are challenged even to think politically. Few palliative care organisations are mobilising against the self-appointed “death with dignity” movement, despite the fact that assisted dying is cheaper than palliative care and will put a damper on public investment and research funding. Palliative care can’t insist that policymakers force patients  to survive within inhospitable modern healthcare systems, least of all in secular societies that no longer ground the value of the human person in a collective concept of the sacred. The most palliative care can hope to do is witness, through a sustainable ethos and praxis, to an alternative life- and person-oriented set of values. Witnessing does not make for aggressive politicking.

The fact is that the palliative care and assisted suicide movements developed in response to the very same profit-oriented, over-medicalised disease-centred health care system. Palliative care just hasn’t developed fast enough to mitigate patients’ perfectly understandable desire to check out as soon and as painlessly as possible. The absence of a political analysis in the palliative care movement, does not obviate the fact that deriving a generalised legal norm of killing from the compelling individual cases of patients in extreme distress who want to exercise their ‘right’ to autonomy and a medically assisted death, institutionalises the original system deficits that inspired the initial decision to suicide.  Assisted suicide policies masquerade as “compassionate choices” for individuals, yet actually institutionalise rules of indifference to families and communities who struggle with inappropriate care.

Normalising physician assisted suicide  through legal regulation, 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 deny the irreducible relationally of the world: they refuse their fellows’ claims, opting out, rather than “staying” to ensure a common salvation [etym “salve” or healing] through more human social and health policies. 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 had their day in the sun. The individuals who request others to assist their suicide are guilty only of personalising the normative nihilism that characterises western modernity.

Palliative care, the “slow medicine” that helps patients and families faced with terminal illnesses live with acceptable quality until natural death, even in the teeth of great pain and distress, is the quintessential medicine of the weak, the medicine that will leave no one behind, to steal the tag line of the 2030 Agenda for Sustainable Development. It occupies the in-between spaces abandoned by the power of the state and medical professionals so consumed by the power to cure, they perceive their inability to ensure patient immortality as permission to kill. 

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