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.

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.

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.

PHOTO BY THE AUTHOR, AUGUST 2017
Dr. Anne Merriman with Catherine before her death.

Nursing Homes Provide Palliative Care for Older Persons in Bogotá

Although the dominant culture in Colombia traditionally values familial care for dependent elders, that culture is being eroded by the modern imperative of small families where both parents work and also care for small children. Care is becoming increasingly professionalised, subsidized through an agglomeration of public and private entities, from insurance companies to faith based organisations.

I was privileged to visit a couple of these nursing homes when I was in Bogotá for a palliative care advocacy workshop hosted by the International Association for Hospice and Palliative Care and the two Colombian national palliative care organisations, ASOCUPAC and ACCP,  Asociación Cuidados Paliativos de Colombia.

Dra Maria Lucia Samudio, a palliative care physician who specialises in geriatrics, was my expert guide around the two nursing homes.

Both Dra. Maria Lucia, and Dra Mercedes Franco, a psychologist located in Cáli, who founded a palliative care foundation that works with the most marginalised populations, are involved with the Colombia Compassionate Communities, Todos Contigo. Declaración de Medellín.

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Representatives of these Compassionate Communities can participate in the Agenda 2030 High Level Political Forum in 2018, which will consider Goal #11, among others, concerning sustainable cities. Since the “Todos Contigo” project includes the provision of community based palliative care, which will be a novelty for the High Level Political Forum, it will be great to hear the Colombian colleagues present at the UN next year.

At the two nursing homes we visited — one of which was state subsidised, the other run by a lay Catholic organisation and funded by donations, the staff were welcoming, the patients appeared to receive meticulous attention, and everything was clean. Both facilities, like most nursing homes, are struggling to make ends meet, sometimes staff don’t get paid on time, and there is strong competition for scarce resources. They still maintained an atmosphere of loving, patient centered care, though. Families were visibly welcome, providing care and attention to relatives and friends.

According to my companion, Colombia is considering a law similar to Costa Rica’s Ley de Cuidadoras, which pays caregivers a basic income. Of course, this is key to achieving several of the Agenda 2030 Goals, including #4 Quality Education, and #5, gender empowerment.

Since the chronic care facility is located in a beautiful historic part of Bogotá, none of its essential features can be remodeled.

IMG_8078.jpgWhile it can be a tedious and expensive proposition to maintain an old building, there are some benefits, such as the sunroom, where patients and families can come and enjoy some daylight and socialisation.

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The gorgeous old chapel is the only part of the interior that has not been remodelled. It contains C17 paintings of the Annunciation and St.Catherine of Sienna (patron saint of the sick), which hang under the original latilla and plaster ceiling.

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The second facility we visited was only for older adults with palliative care needs.  Of 26 patients, 23 had dementia diagnoses. When operating at full strength a few years ago, they had around double the number of older adults, and also had children, so it was a multi-generational care home.  The children and abuelos together painted the mural at the top of this posts, on the occasion of the first World Hospice and Palliative Care Day in 2005.

The bedrooms are beautifully kept, and as homelike as possible with keepsakes in every one for a family like atmosphere.

IMG_8096I met Señor L. in the dining room, after all the “abuelos” as the staff called them, had lunched. Not a dementia patient himself, he had lost his wife to cancer and dementia a few months previously.  Their family photo, hung with a rosary, is on the wall of his room, which used to be theirs.

The topic of palliative care for older persons will be on the agenda of the Open Ended Working Group on Ageing next year at the United Nations, and IAHPC welcomes all palliative care team providers to submit their stories, photos, and videos (with permission of the elders of course) for a special series of articles on Ehospice focusing on palliative care for older persons.  We are beginning to gather a body of evidence from all our partners in many countries regarding the state of palliative and long term care for older persons. We are planning a campaign to promote this very exciting and timely topic at the Open Ended Working Group in July 2018, including with side events, expert panels, and testimony of civil society providers of palliative care for older persons. We invite you to join us and submit your stories!

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Fingering the wounds

I went on home visits to very poor neighborhoods in Montevideo last week with the excellent publicly funded palliative care teams at Hospital Maciel, originally a charity hospital founded by an order of sisters in the eighteenth century.

Interestingly, the otherwise state of the art palliative care teams did not do spiritual care, or do spiritual assessments when doing patient intake.  The professionals I asked about spiritual care responded that they provide “psychological care,” if necessary.  Courses in psycho-spiritual elements of palliative care are taught by psychologists.

Uruguay is a very secular country, an anomaly in Latin America, with a only minority of citizens identifying as Catholic or regular churchgoers.  Yet the country is well off, and very progressive in many ways, also an anomaly in that its national health service includes home based palliative care services.  The people are extremely friendly, and greet one another, even strangers like myself, with a kiss, much like the early Christians! It made me think, as I often do when I reflect on my secular friends and family members who wouldn’t be caught dead in a church, of theologian Dietrich Bonhoeffer’s “religionless Christianity,” a concept he did not have a chance to develop before he was executed by the Nazis in the last days of the Third Reich.

Although he was a Lutheran pastor, Bonhoeffer was very critical of the church and understood why people were drifting away from an institution that offered largely “cheap grace…grace without discipleship, grace without the Cross.” (Cost of Discipleship)  As Bonhoeffer said, “We are moving towards a completely religionless time; people as they are now simply cannot be religious anymore.” (Letters and Papers from Prison) The concept of “religionless Christianity,” on the other hand, demands costly grace of disciples, and obedience to Jesus’ call to radically follow him. 

This morning’s mass readings for the Second Sunday of Easter include Jesus’ famous words to the disciple Thomas, the one who said he would not believe until he put his fingers in the wounds made by the nails of the Crucifixion.  Jesus tells him straight up to put his hands in the wounds, and feel for himself.  Although John’s Gospel does not specify that Thomas actually did that, it’s Jesus’ instruction in an era of religionless Christianity that interests me, because that is exactly what today’s doubters, today’s Thomases should do.  Feel for themselves the wounded body of Christ.

That wounded body is the forgotten ones — the people who are hungry, humiliated, diminished, marginalised, mentally ill, and dying. The doubters should put their hands in that body, literally get their hands dirty with the work of serving, like Dorothy Day, like the countless anonymous Christians and non-Christians who serve their helpless fellow human beings all over the world. Whether or not they interpret it that way, they are tending to the wounded body of God.  I think that is what Bonhoeffer was getting it.

I particularly love how John tells us that when Jesus appeared in his resurrected body in the middle of the huddled and frightened post-Crucifixion disciples, “Jesus breathed on them and said “receive the Holy Spirit.”  Classical Greek renders that breath as πνεῦμα or pneuma. The Holy Spirit came through his breath.  I remembered to do the Tibetan Buddhist practice of tonglen at a patient’s house the other day in response to the dense suffering that surrounded this teenager’s dying, and what a great practice tonglen is in such circumstances, when the pain brought on by the despair of losing a child is unbearable.  Being present to that despair allows us to breathe in the suffering as we inhale, and send out the holy spirit in our outbreath, our pneuma, to serve as a container for the pain, when the one who is suffering cannot.

Providing spiritual care as an integral component of palliative care can respect the secularity of the patient and family. It does not have to be religious or even “spiritual,” but can simply be compassionate, intentional presence  — being with the patient and family in their distress. According to one consensus definition, “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” Attending to that need for meaning and purpose fills a vacuum that is otherwise filled with great suffering, suffering that cannot be assuaged by any amount of excellent clinical care.

I have been praying daily for the young man who is dying of an aggressive brain tumor, who is bedridden and whose friends don’t visit any more, and for his mother, whose grief we we were able to accompany for a brief time last week. Thank God for the palliative care teams — the religionless Christians — who could visit their humble home at no cost to the family, who could at least alleviate the young man’s physical pain and by their very attendance on him, let his family know they are not abandoned in their hour of greatest need.

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Palliative care as transformative practice: dedicated to my hospice/palliative care friends and colleagues around the world

Palliative care transforms everyone who participates in it — who gives and receives it — from the inside out.  It also has the power to transform systems from the inside out.  Palliative care practitioners need public recognition and funding to accomplish these transformations for the benefit of patients, families, and health systems around the world.  Palliative care ethics cut against the grain of profit-oriented systems that reward individualistic, rather than socially embedded, conceptions of health and wellbeing.

Palliative care values people as human beings, as ends in themselves. Its ethical compass overrides the dominant system priorities, being pointed at the moral imperative of alleviating vulnerability and distress.

By identifying and attending to pain along multiple dimensions — to “total pain” — palliative care affirms the inherent value of the person.  Its concern with suffering amounts to a declaration that our common mortality makes us all, no matter how ill or debilitated, equal. In that sense, palliative care is profoundly democratic and non-elitist.  That in itself is transformative.

The qualities and virtues palliative care builds in practitioners at the bedside (the microcosm) have the power to shift world views in the macrocosm. It is not overstating the case to say that the development of palliative care represents the beginning of a paradigm shift. Unlike their patients, palliative care practitioners and advocates have voice and influence in the public world, and are using it to call for the discipline’s integration into national and global health systems as a matter of justice.

Palliative care advocates such as myself and my colleagues who work at the international level, remind countries of their human rights obligation to institutionalise palliative care as part of the right to the highest attainable standard of health. This requires that they develop policies and allocate funds to support it.

The strategy of presenting palliative care as a human right, rather than as an option, allows policymakers to see it as a universal need rather than a political football. Populations all over the world are rapidly ageing, the prevalence of non-communicable diseases such as cancer, diabetes, and heart conditions, is increasing. Funders and policymakers realise that they and their families will also need palliative care in the not so distant future. Universally recognisable needs rarely cause political fights.

Palliative care practice is politically subversive, although not in the conventional sense of political campaigns that cause harm by seeking power or shaming opponents. Its virtues and ethics are deeply political in the classical sense though, a sense that has been largely forgotten, but is immanent in our political DNA. These virtues are expressed in the friendship, courage, and honesty (truth-telling) that exemplify best practice palliative care.

When the ancient citizenship virtues are practiced in the modern context of the private realm, at the beside, palliative care communities are actually reconstructing the genetic material of the public sphere, much as stem cells do. They are rebuilding damaged ethical tissue from the inside out, causing the dominant system or politeia — body politic — to shed its old skins, and reorient itself toward the common, rather than the private good.

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Palliative care and hospice practice inspires learning along spiritual, as well as clinical and psycho-social dimensions. Practitioners’  proximity to death and embrace of vulnerability, advances the emotional intelligence of society as a whole.  We have the privilege of accompanying people who are journeying between the worlds, our ‘patients.’ They and their personal caregivers have so much to teach us about what is really important during their final months and days.

Those teachings usually concern the values of surrender and open-heartedness, as well as struggle. Surrender, paradoxically, opens human consciousness to truths and realities that are not otherwise apparent when we are immersed in the more “worldly” dimensions of achievement and commerce.

Bedside practice teaches us to slow down, listen, and be respectful of both the “undignified” and the unfathomable.  What we learn there informs our family and public lives. It creates a ‘meme’ that can replicate effectively, transforming other key domains of our worlds.

May the vision of universal palliative care can become a reality!