Palliative care in Panama City: Visit with Monsignor Mirosław Adamczyk, Papal Nuncio, Feb. 13 2019

When the Representative of the Holy See in Panama City, Monsignor Mirosław Adamczyk, exclaims, “The price of medicines here in Panama is scandalously high! Higher than any the countries I have ever been assigned to,” he is echoing his boss, Pope Francis, who has often expressed his concern for the health of his flock, including most recently on World Day of the Sick. As a pastor who respects the universal right to health, the Monsignor was upset by the fact that the high prices mean medicines are unavailable to the poorest of the poor — those not covered by social security.

This Holy See attitude is aligned with the World Health Organisation, which takes a rights based approach to the price of essential medicines and seeks to balance the profit seeking role of the pharmaceutical companies against peoples’ need for basic healthcare. Luckily our visit came at a relatively quiet time, after the papal visit for World Youth Day. I was in the country for the Ministry of Health sponsored Central American Launch of the Lancet Report on Pain and Palliative Care, and to accompany teams on home visits in rural areas. (See my previous blog on Aguadulce).

The Pontifical Academy for Life (APV) in Rome had notified Monsignor Adamczyk that I was coming to Panama for the Lancet event and would like to brief him at his convenience on the Pal-Life program. Our delegation to the Nunciate, showed in the photo below, comprised (left to right) Dr. Tania Pastrana, President of the Latin American Association of Palliative Care (ACLP), Dr. Irena Etcheverry, director of Hospice Madre Teresa, in Luján, Argentina, Professor Myrna McLaughlin-Anderson, Senior Advisor, Ministry of Health, myself, and Dr. Nisa Camaño, Coordinator of PC for the Caja de Seguridad Social in Panama, and President of the Panamanian Society for Hospice and Palliative Care.

It turns out that Mons. Adamczyk, unlike many of the Nuncios I have called on in my travels, knows quite a bit about palliative care, coming as he does originally from Gdansk, home to several hospices. He cited the obligation to care for the sick as though they were the body of Christ, quoting Matthew 25: “when I was sick you visited me.” Another big one for me is, “when I was imprisoned you visited me.” Father Piotr Krakowiak founded a pioneering prison hospice program in Gdansk, teaching inmates to care for one another during their last days.

Monsignor insisted during our conversation, on the importance of the presence of a compassionate pastor throughout the illness and bereavement processes. He was sensitive to the pain of family members who felt guilty and abandoned when the person they had been caring for died, especially when the death had been distressing.

The Nuncio had witnessed this grief first hand in Venezuela, where few priests could be found to comfort the bereaved in public hospitals. Our discussion on the vacuum of compassion in certain healthcare systems also touched on euthanasia and the untimely death of a friend of his in Belgium who requested and received euthanasia after a cancer diagnosis. Apparently it costs EUR48 to fill a euthanasia prescription at the pharmacy.

Sheila Lichacz

We agreed that the fight for a right to palliative care is taking place in the shadow of growing public support for euthanasia and medically assisted dying. The Nuncio expressed support for the idea of a hospice in Panama City, and agreed to remain in contact with Professor Myrna McLaughlin-Anderson, palliative care chargé in the Ministry of Health.

After our lengthy conversation, the Monsignor took us on a tour of the public rooms, showcasing works of art selected to reflect the talent of this tiny, but mighty country.

Sheila Lichacz

The altar in the Chapel (“after all it’s His house!” declared Monsignor before showing us around) is simple and elegant, the door to the ciborium being designed to unroll like the stone from the tomb.

 

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.

Palliative Care and the Parable of the Unjust Judge

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

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

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

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

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

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

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

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

Calling for a Palliative Care Culture

Palliative care, the “medicine of the future,” (Dr. Carlos Centeno) has more than a clinical dimension. It has social and political dimensions that spring from its grounding in a commitment to relieve total pain, which includes spiritual pain. The social and political dimension of palliative care has the potential to heal body politics damaged by systematic indifference to what societies perceive as unworthy and unsuccessful. It heals by normalising new ecologies of care that honor and include patients, providers, families, and the wider community. The novel patterns, or resonances, characteristic of palliative care, paradoxically, embody the classical virtues of practical wisdom (skill), generosity, compassion, courage, friendship, and prudence. They provide an interpretive key to optimal (evolving) human functioning that perfects, rather than challenges, conventional, or curative medicine.

The approach proclaims, through its praxis, that how individuals die matters to the health and well being of the society, polity, or state. Simply put, the how, why, and wherefore, of every single death, however anonymous or humble, either damages or dignifies the body politic as a whole. As John Donne said many centuries ago, in lines that are just as relevant today, “Any man’s death diminishes me, because I am involved in Mankind.” (MEDITATION XVII, Devotions upon Emergent Occasions)

Our medicalised modern cultures render reason and mystery mutually exclusive, define death by disease as failure, and dying as disgraceful. Providers and policymakers alike marginalise ageing and dying individuals, while formulating largely ineffective strategies to prevent deaths from violence or epidemics, terrorism, and famines. Deaths in pain and distress without without palliative care and pain relief, in remote villages and slums, do not compel political attention or budgets. It is palliative care’s mission to demonstrate that each is morally significant, restoring patients’ and families’ quality of life where possible, and attending meticulously to the dying period when necessary.

Palliative care enacts new patterns and algorithms that signify an evolutionary turn. As Sir Julian Huxley noted in his preface to Teilhard de Chardin’s Phenomenon of Man, “Evolution…becomes primarily a psychosocial process, based on the cumulative transmission of experience and its results, and working through an organized system of awareness, a combined operation of knowing, feeling, and willing. [This] gives rise to new patterns of cooperation, new organizations of awareness, new and often wholly unexpected possibilities have been realized.” (Huxley Introduction, Phenomenon of Man, Teillhard de Chardin)

 

Palliative care is one such “new pattern of cooperation and new organisation of awareness.”

Building policy support for palliative care requires presenting it in a positive, albeit instrumental, light: palliative care can be preventive: protecting caregivers and family members against stress induced disease; it can heal: attend to multigenerational wounds and fractures. It can support productivity and participation: basic pain relief and essential services can restore patients’ and families’ autonomy and independence, restoring them to one another and to the community. Policy makers need to see palliative care as an investment, rather than a costly add-on. Developing it will stimulate a palliative culture. A palliative culture privileges presence and accompaniment in the last chapters of life as an honour and a privilege, rather than a burden; as an opportunity for enrichment and spiritual growth of patients, families and caregivers, rather than a dreaded chore assisted dying could take care of.

Lack of palliative care in more than 80% of the world, and lack of palliative care medicines, which contain “narcotic drugs,” has driven what experts call the “global pandemic of untreated pain.” (ESMO Press Release, 9.29. 2012) A palliative culture is halting and slowly reversing this pandemic, whose source is cumulative indifference and ignorance that dates back to the golden age of imperialism. Ending the pandemic, bringing healing to damaged body politics, embodies the structural grace of palliative care praxis, where, holographically, the part contains all the information to change the functioning of the whole.

Each palliative care team at each bedside of each person with a life-limiting illness, prefigures and ushers in the Beloved Community, in a process that resembles stem cell therapy at the heart of healthcare systems. By being person- rather than disease-centered, palliative culture enfolds the marginalised Other into the whole, thereby enhancing the collective emotional intelligence, an evolutionary marker.

The grace that is the health of creatures can only be held in common.

In healing the scattered members come together.

In health the flesh is graced, the holy enters the world.

(“What Are People For,” Wendell Berry)

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. 

Healthy Dying

 

This post was inspired by a recent Tricycle article, “Death as a Spiritual Experience.” Our culture is so death phobic, yet paradoxically so entertained by violent death, that the idea of healthy dying seems counterintuitive. The much touted public health concept of “Healthy Ageing” conveniently omits the final chapter — dying, which would seem to contradict, or at least undermine, the goal of health.  How could dying possibly be healthy?

The rational solution to the problem of assuming that dying must be unhealthy, is of course government approved “physician-assisted” dying or euthanasia.  An alternative approach, which considers dying a natural process and an opportunity for healing, is of course palliative care. Offering support to patients and families through the illness, dying, and bereavement process alleviates a measure of suffering by offering to mend  breaches of connection, or heal relationships between family members. These include breaches within the self, failures to connect with, and love parts of yourself you have always despised. The transition out of the body that we call dying will be much more painful for all concerned until we accept all those parts. Doing so restores us to wholeness, or health.

Tibetan Buddhism is one of the few religious practices that directly confronts the experience of dying with a forensic, phenomenological approach that takes the transition to other vibrational realities seriously. Christianity also takes it seriously but is based on the third person perspective, or the idea that we each can mystically participate in the dying experience — the Passion — of the Christ. Doing so does not necessarily demand that we be the witness to our own dying, though.

And Vipassana teacher Larry Rosenberg points out: “most of us are imbalanced when it comes to death. We haven’t come to terms with the nature of our bodies, and we don’t see death as a natural process. So we have all kinds of funny reactions to it: excessive joking, or avoidance, or preoccupation in a morbid way. Death awareness practice can bring us into balance.”

tibetan-book-of-the-dead

We can practice for dying simply by becoming aware of our breathing — of each outbreath that might be the last, and then the next and the next and the next. Making all our living in awareness of the outbreath a practice for dying enables us to  directly experience the present moment, rather than experience in a mediated way, as narrated, or not be experienced at all.

I aspire to experience all my dying: after all, it may be the only time I do it in this body, and it would be a shame to miss out!