Palliative Care Ticks all the Astana 2018 Boxes

Palliative care was included in the #Astana2018 Declaration as an essential service of Primary Health Care (PHC). It ticks all the 1978 Alma Ata Declaration boxes regarding justice, equity and solidarity, and now meets the global health needs of the 21st century.  It is a recognised element of primary health care (PHC), an essential service under UHC, an engine for at least five goals of the 2030 Agenda for Sustainable Development (SDGs), and is human rights friendly. All the major religions of the world have endorsed it and according to the 194 member states that approved a World Health Assembly Resolution four years ago, it is an ethical obligation of governments and health systems.

The concept of ethical responsibility in WHA 67/19 aligns with Agenda 2030’s ethic of “global citizenship” and the Universal Declaration of Human Rights(UDHR), which recognises the “inherent dignity […] of all members of the human family.” Palliative care supports human dignity by relieving the severe physical, emotional, and spiritual suffering of patients and families facing life-limiting illness. As a bio-psycho-socio-spiritual approach to suffering, it affirms life while regarding dying as a natural process.

By recognizing and specifying palliative care as an essential service under UHC, the 2018 Astana Declaration reflects the incremental progress since Alma Ata 1978, in the global development of palliative care. Although still unavailable to millions who need it, palliative care services are slowly taking root around the world. The dedicated professional, multi-disciplinary teams who constantly struggle for professional recognition and support require more public funding through UHC. In the interim, as governments get organized around this, donor support is required to build capacity and reach all the hidden patients in need, those who are told to “go home because there is nothing more we can do.” Palliative care is the “more” that can always be done.

Uruguay PC

Even in 2018, the vast majority of palliative care is still provided by a shrinking handful of underfunded, understaffed, deeply committed, charitable and faith based organisations. May the 40th Anniversary of Alma Ata and Final Declaration inspire finance ministers and donors to recognize the fundamental value of primary and palliative care, and bring them into the policy limelight where they belong.

Governments that integrate basic palliative care into primary care services are more likely to achieve SDGs # 1, 3, 4, 5, 8, than those that don’t. Palliative care as part of UHC (Target 3.8) is a cost effective and ethical alternative to expensive hospitalisation and futile treatments (where available), which drive working families into the medical poverty trap. Community based palliative care supports household, local, and national economies, reducing health related workplace losses by at least 50%. (When serious illness hits a household, both the patient and at least one family caregiver leave the formal or informal economy). Community based palliative care teams that relieve this largely female, largely unpaid, caregiver workforce of the essential task of supporting disabled and dying loved ones, promote gender equality, education, and decent work.

Palliative care integrated into primary healthcare ticks all the global health boxes: clinical, social, economic, legal, spiritual and ethical. Now that it is included in the 2018 Astana Declaration, governments can partner with local, national, and regional palliative care associations to strengthen their health systems, train providers, implement internationally approved standards and guidelines, improve access to internationally controlled essential medicines, achieve the SDGs, and best of all relieve severe health related suffering #SHS.

For more information on what the International Association for Hospice and Palliative Care is doing to advance palliative care worldwide, and to support us by joining, please see http://www.hospicecare.com.

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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.

Religionless Palliative Care Comes of Age

December 22, 2017.

As 2017 comes to a close, palliative care is still unavailable in more than 80% of the world. What hospice and palliative care services do exist in the Lower and Middle Income Countries is provided by charity funded and faith based hospices, operating hand to mouth, on a wing and a prayer, just as they have since medieval times when the first hospices were founded by religious orders. Christians have always spent scarce resources caring for the sick because doing so is a corporal work of mercy — it amounts to caring for Jesus himself (Matthew 25). How can these ethics be secularised for modernity? What arguments can be used to persuade secular governments that spending scarce resources on (religionless) palliative care — a stipulated human rights obligation — is good public policy?

First of all because the “incurables” abandoned by health systems built to address trauma, triage, cure, and infectious diseases, are the citizens of those governments, if not refugees and migrants who are resident in their countries. The charity funded hospices that still struggle to meet the needs of dying patients, such as Hospice Ethiopia pictured above, can’t possibly care for all the palliative patients in need, given the global increases in life expectancy combined with the proliferation of complex chronic and drug resistant diseases. Since less than 12% of modern deaths will be “sudden,” the vast majority of people will need long term and palliative care as they age out of the workforce. How can governments justify public expenditures on care for them when most allocate less than 5% of their GDP to health? Unlike mothers with newborns who have the potential to work, the seriously ill and dying have no apparent agency: they contribute little or nothing to society or the economy, so are considered a drain on working families, public services, and insurance designed to deliver good health and restore people to productive lives.

Making the case for publicly funded (religionless) palliative care means reframing the concepts of utility and agency in terms of the social impact of providing palliative care to children, the frail elderly, and the terminally ill. First of all, just because those who need palliative care are not “contributing” now, does not mean they never did, and that they still cannot. Most of those who are now elderly, ill, and abandoned, have raised families, paid taxes, fought for their countries, created art, and served their communities in multiplicities of ways. Their frailty and dependence qua dependence, represents a invaluable social and human resource that collectively mirrors the humility we must expect to learn as we enter older age. The agency of those apparently without agency consists in their teaching younger generations who are given the opportunity to serve them (through taxation, the labor force, volunteering, etc.) the value of giving without repayment in kind; palliative care patients provide societies as a whole with the opportunity to accumulate the social capital of civic trust, compassion, and generosity: the connective tissue of resilient communities.

There are, of course, more easily measurable clinical and epidemiological impacts that can be used to persuade policymakers and health economists that “upstream spend” on palliative care is rational and cost-effective once hope for expensive cures or futile, life-prolonging courses of treatment is gone. Because palliative care focuses on the family and caregivers as well as the patient, it reduces overall health system costs and increases the chance that survivors (caregivers) will have better mental and physical health outcomes. It does this through providing accompaniment, support, and professional attention to caregivers and families of dependent patients.

In secular societies, where by definition, faith and a sense of mystery is a personal/private choice rather than a given, individuals have trouble assimilating the suffering that inevitably accompanies life-limiting illness. Suffering is generally either medicalised or denied/repressed, often surfacing as problematic substance use disorders (behaviours with harmful public health and social impacts). Palliative care can address these dimensions of repressed and refracted suffering, which almost always surface with death, dying, and serious illness. By accompanying patients and families into the unknown territory of suffering, rather than abandoning them to navigate it alone, the palliative care approach, as the World Health Organisation calls is, makes societies more resilient and “fit for purpose.”

The evidence shows that family and caregiver stress — sometimes post-traumatic stress after a hospital death — from looking after dying patients with poor communication and no support from professional staff, is creating a slow motion epidemic of mental illness in survivors. The untreated depression, trauma, and pain of unaccompanied patients and families, generates a (downstream) public health crisis of its own, given that for every palliative care patient, there are at least four or five (paid or informal) carers. These newly vulnerable populations will be more susceptible to both communicable and non-communicable diseases, including cancer, dementia, substance use disorder, and heart conditions. The antidote is upstream palliative care services that strengthen health systems and stimulate the development of skilled health workforces, promoting gender empowerment, quality education, and inclusive societies, all key goals of the 2030 Agenda for Sustainable Development.

In his Letters from Prison, theologian and pastor Dietrich Bonhoeffer, martyred by the Nazis in 1945, pondered the phenomenon of “religionless Christianity” in a world that has “come of age,” one where people driven to perform concrete works of mercy and justice no longer need the churches with their assurance of private salvation in return for piety. Publicly provided palliative care, Matthew 25 in action, could be seen as one such instance of religionless Christianity (or any other faith for that matter). In this day and age it is essential to supplement the “remnant” of faith based hospice care that still tends to the body of Christ, with religionless, publicly and insurance funded, palliative care. Advocating for this is what Bonhoeffer had in mind when he talked about proclaiming God’s word through the power of secular language.

Religionless Palliative Care and Polyphony

Since the “religionless palliative care” blog I published last week got quite a few likes and shares, I thought I might try for a second installment. I was surprised by the positive response, as I was unsure how the conversation between Bonhoeffer (DB), palliative care, and the WHO would come off. This essay tries to explain and go deeper.

Palliative care provision enacts what DB calls “earthly affection,” in his notion of polyphony. As a Christian, Bonhoeffer identifies the “cantus firmus,” of this polyphony as Love of God, and the other melodies of life (the earthly affections) provide “a contrapuntal” that “enjoys autonomy of its own.” (Prison Letters) The religionless provision of palliative care is earthly affection grounded in a cantus firmus of love (agápē) for suffering humanity.

Palliative care’s core commitment is to relieve the suffering that accompanies serious illness, a feature of the human incarnation, of all sentient beings. Although each individual’s suffering is uniquely his/her own, skilled palliative care practitioners can accompany it, and often relieve it, through evidence based practice grounded in agápē.

Structurally, the multi-disciplinarity of palliative care echoes the polyphony Bonhoeffer talks about. As a volunteer on palliative care teams, I have often been struck by how open team members are (from physicians to volunteers) to listening, and to co-creating a melody that allows patients and families to realise their goals of care. Palliative care curates an ethic of polyphonic conversation that attempts at least, to align with truth: not Truth, but the truth of the unique configuration of patient and family relationships, prognosis, and team resources.

When I reread Bonhoeffer this time, the notion of “responsibility,” jumped out at me, since it also applies to religionless palliative care. He says,

The ultimate question the man of responsibility asks is not, How can I extricate myself heroically from the affair? but, How is the coming generation to live?

Palliative care practitioners ask

How is the coming generation — and the earlier generation — to die?

This question makes us persons of responsibility. Palliative care fosters an ethic of service and civic responsibility that is anomalous in these times of hyper-individualism. Almost by definition, palliative care attracts practitioners who favor the common good over their own career and advancement. In general, providers receive lower pay and have less recognition and prestige than their colleagues in other specialties. In some cases they are downright despised and marginalised within healthcare systems.

In this sense, Bonhoeffer’s notion of transcendence as “being for the other,” applies to the palliative care workers it is my honor to know. Fr. Alfred Delp, SJ, another Christian martyr sent to the gallows by the Nazis, also noted that,

“Man is truly human when he transcends himself. He becomes small when he is content with things and values from is own life sphere.” (Advent of the Heart)

Transcendence is “holy worldlessness,” which is the key to Bonhoeffer’s religionless Christianity. One of his biographers, Williams Kuhn, says,

By the term [holy worldlessness] he (DB) means a complete dedication to life, a commitment in one stroke to a man’s own potential and the needs of the world,

Religionless palliative care is chock full of practitioners who are dedicated to life, which of course includes suffering and dying; and who are dedicated to man’s [sic] potential to help systems evolve to serve the most vulnerable, as the WHO Draft Program of Work (see Religionless Palliative Care Part 1) commits to do.

The needs of the world at this moment clearly include the provision of public health palliative care, which we will all of us eventually be clamouring for, unless blessed with sudden death (less than 12% of deaths these days).

To the attract the sustainable government funding it will need to cover the majority of the population, palliative care must be inherently religionless, even though faith-based groups will certainly continue to provide it as a corporal work of mercy.

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.