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.

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 travelogue: Public health and good faith caring for low income seniors in Uruguay and Buenos Aires

Uruguay is a tiny country, population of just over 3.4 million, where seniors with limited means who suffer from chronic conditions can receive palliative care at home or in the public hospital. It has universal health coverage instituted by a left-leaning, human rights centered government that took office after the dictatorship was deposed. Interestingly, Dr. Gabriela Piriz’s multi-disciplinary team at Hospital Maciel (formerly Hospital de San José y La Caridad)  in the old section of Montevideo, is young, militantly secular, and non-denominational. In contrast to Uruguay’s universal coverage, only about 4% of those who need it receive palliative care under Argentina’s public health system, leaving an enormous eldercare and hospice gap barely touched by the faith based organisations I visited in Buenos Aires. According to ACLP President Dr. Tania Pastrana, 96% of people in Argentina die in pain, with treatable symptoms.  Argentina ranks 37th of all LAM countries in quality of death. Interestingly, Argentina is chairing the Open Ended Working Group on Ageing at the UN, and supports development of a convention to protect the rights of older persons.  I have insisted, during preliminary, exploratory meetings to discuss the need for such a binding instrument, that palliative care is an essential element of any such convention. 

The day after I arrived in Montevideo, I went out on housecalls with Dr. Piriz’ service, which supplies free medicines, medical devices, and clinical services to older persons living at home. The only element lacking was spiritual care, in which teams are not yet trained. Impressively, the service has managed to cut the palliative sedation rate of Uruguay to 6.1%, less than half the regional rate. Doctors can give palliative sedation only with patient and family consent in order to mitigate refractory symptoms that are causing unbearable suffering. The majority of terminal sedations in Uruguay are performed at home with family members present. Doctors don’t administer palliative sedation with the intention of causing death, but to relieve terminal agony when no other remedy is available. It is the mark of a well trained palliative care service that they can keep this intervention at bay for as long as possible.

New challenges for homecare teams serving poor neighbourhoods around Montevideo are the extreme weather that occasionally tears roofs off patients’ homes or makes muddy (unpaved) roads impassible.  Police actions related to drug market violence can also make it too dangerous for teams to enter the barrios and see patients in their homes. Sometimes they can only enter with armed escorts. Patients with limited family support and the means to pay, can access a system of private, assisted living residences. The Maciel is a last resort when there are no family caregivers and no money. 

In Buenos Aires, I visited two organisations serving seniors and the seriously ill with limited means. Both are faith based — one Jewish assisted living and one Catholic hospice — and both are funded by private donations, which are dropping precipitously in the ongoing economic crisis.  

Casa de Bondad is a hospice in the Manos Abiertos network, a charity that serves the poorest of the urban poor. This hospice’s work was inspired by the dying words of St. Alberto Hurtado, SJ., the Chilean saint cannonised in 2005, who prayed to imitate Jesus’ injunction to “do for the least of them,” as you do it for me (Mt. 25,40). Below is a photo of an old painting that hangs in Casa de Bondad depicting a band of Jesuits sheltering under the cloak of the Blessed Mother. IMG_6958The hospices, which operate on a shoestring in four Argentine cities today, are the fruit of a dream conceived over ten years ago by one Jesuit priest with a dedicated team that includes volunteer Executive Director, Ana Pannunzio, and Medical Director Dr. Sofia Bunge.

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“Serve everyone as Christ himself.”

Only six of the eight beds at Casa de Bondad were occupied, not because there is no demand for all of them (there is a long waiting list) but because the current level of donations won’t sustain the salary of the other nurses who would be needed to fill the extra shifts. 150 trained volunteers, two salaried physicians, and six shift nurses serve the fortunate few who make it through the door at any one time.  I met several volunteers and all six patients, five of whom were young adults, aged beyond their years by poverty, and preventable disease, but far from elderly.  All were terminal, beautifully cared for at the last, in a relatively non-institutional setting whose mission is to provide them with companionship and skilled nursing at their time of greatest vulnerability.  For more information about the hospice and to make a donation, see this link.

The other volunteer palliative care team I met in Buenos Aires worked at the Jewish assisted living home, LeDorVaDor (Hebrew: from generation to generation). LeDorVaDor was founded to serve low income Jewish seniors in Argentina, those whose adult children can no longer care for them, or who have nowhere else to go. Donors and wealthy patients, who are the minority, subsidise the care of those with no means to pay, ensuring that residents lack for nothing in this very high end facility.  A lifecourse approach, including Montessori for dementia patients, keeps residents active and engaged for as long as possible. The library was well stocked, the  cafe open, the kinesiology program busy, and the high staff patient ratio evident. The palliative care team, employed by the hospital in their different clinical capacities, all serve as volunteers, providing an extra layer of care for patients whose condition offers no further hope of treatment.  

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The author with a patient and palliative care team at LeDorVaDor

Dr. Wanda Gisbert, who trained in palliative care at the Hospital Tornú, originally Argentina’s only public TB hospital, founded the team, recruited and trained interested colleagues, and introduced the discipline to an uninterested administration at Hogar LeDorVaDor. Her team is gaining recognition as colleagues see how palliative care not only improves their patient outcomes, but complements, rather than competes with, their own clinical specialties. LeDorVaDor and Casa de Bondad both provide great models of leadership and service for low income seniors in the city of Buenos Aires. 

I met some wonderful palliative care clinicians and geriatric specialists who were attending the teaching and advocacy workshops co-sponsored by IAHPC and the ALCP in Argentina and Uruguay. All were committed clinicians caring for fragile elderly populations under very challenging circumstances, and were frustrated by the bureaucracy that interferes with their ability to do their job as well as possible.  The need for expert elder care is growing fast, and trained staff and volunteers so few, but so valiant and big hearted, both in the public and private sectors of both countries.

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The volunteer palliative care team at LaDorVaDor, Dr. Gisbert far right

The ITES (Iniciativa Transformando El Sistema) workshop, spearheaded by Dr. Roberto Wenk of FEMEBA, and attended by physicians from almost all regions of the country, represented an excellent step towards the further propagation of person centered palliative care in Argentina.  Learning how to teach palliative care to medical students, as these professionals were doing, is key to expanding professional capacity to bring older persons expert care at the end of life.

Catholic caregiver blog. Tuesday, St. Peter Damian

Tuesday — Meeting with OAS for approval of IAHPC membership application. Trip to DC.

Jawdroppingly beautiful sunrise this morning after a very rough night with little sleep.  Impossible to photograph the layers of light behind the bare black branches, but it was riveting, and I’m glad I moved the bed to face east to catch it as I pray the office with my cup of tea. And the Communion Antiphon was Psalm 9:2-3 “I will recount all your wonders,/I will rejoice in you and be glad,/and sing psalms to your name O Most High.”  O most definitely, as I would be entirely lost without you.

The first reading was from Sirach, as it has been for the past week — warning us that “when you come to serve the Lord, /stand in justice and fear,/prepare yourself for trials./Be sincere of heart and steadfast.” That is my intent as I do this service work, both for Ruth and for the wider world.  I was tormented last night with the euthanasia debate and kept telling myself to put my worries in God’s hands, as I cannot solve it myself.

The Sirach reading continues “incline your ear and receive the world of understanding…Wait on God with patience, cling to him, forsake him not;/thus you will be wise in all your ways.” My main concern is that, if our advocacy position is to force people to defer physician assisted dying and euthanasia until palliative care is mainstreamed and all the providers trained, etc., then we are effectively forcing them to suffer without proper care.  That seems to be a deeply unethical advocacy position.  I realise it is the responsibility of the healthcare institutions and the state (not ours) to develop the policies and train the providers, but what if they don’t?

It is our responsibility to lobby and advocate as skilfully and persistently as possible for palliative care, but what if our advocacy falls on deaf ears?  Can we in all good conscience oppose calls for medically assisted dying and euthanasia, thereby forcing people to suffer, essentially in abandonment and neglect?  And as Sophia pointed out in our conversation yesterday, the Belgian position has palliative care covered, and still includes euthanasia. Perhaps we need to join forces with the euthanasia lobby but make our support conditional on the fact that they also lobby for PC?  Interesting that Age Platform Europe does not have a position on euthanasia since its members have multiple positions.

At breakfast Ruth was telling some story and said “I can’t believe I was once able-bodied” and then started to cry. I said, well, now you are able-souled. We got over that moment, but it will be good if we can talk more about it bit by bit.  Euthanasia is such a fruit of modernity.  Watching “Call the Midwife” and Sister Monica Jones used the phrase “ostentatious silence.”  We both loved it.  It is perfectly rational that moderns want euthanasia as a right, in a world without God.  Euthanasia and physician assisted dying are the fruits of modernity.  I don’t want to be against anything: I just want to be for it: for palliative care, for connection, for solidarity.

Today we celebrate the feast day of Peter Damien, who I did not know about until I looked him up — 11th Century Benedictine, who wrote a piece on “The perfection of Monks” calling them to be “smeared with pitch” both inside and out, like the Ark. The pitch is the inner lining of love, and the outer lining — how we act to others.  Inwardly united to God in love. If only one side is smeared with pitch “they cannot be saved from shipwreck in the deluge”, since they don’t have the double lining for protection.It’s a call for unity in love, basically.  It seems he had a very adventurous and political life, riddled with disunity and faction. Poor man.

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