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.

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)

The Dunkirk Miracle and Palliative Care

I came of age in post-WW2, London, still rebuilding from the Blitz — as kids we played in the rubble of the bombed out shells of houses on our block — nourished by the legend of Dunkirk, its David and Goliath dimension, its pulling out all the stops solidarity.

Watching Christopher Nolan’s film “Dunkirk” I identified with the small boats swarming to rescue soldiers on the beaches. Working to establish a global palliative care culture feels a bit like that: engaging with a handful of colleagues in an all hands on deck effort to humanise care for people at the end of life. Setting off unarmed in our small boats in a flotilla to take as many of our fellows as we can aboard and head for home.

Palliative care and hospice units around the world are, almost without exception, nimble operations that barely survive on charity funded shoestrings: the small fry in a big institution, highly professional yet receiving the least recognition. Palliative care providers tend to be those who forgo the limelight in exchange for the privilege of accompanying patients and caregivers through the rough waters of serious illness and dying. In modern societies that stigmatize older age, dying, illness that cannot be cured through heroic healthcare efforts, palliative care practitioners run headlong into the trouble, preparing for the worst as other “healthcare” providers head in the opposite direction, sometimes even blocking their way.

The Dunkirk boat captains saw that event as a high point in their lives, a peak experience, the kind that makes life worth living. When they were in the middle of it though, as the film showed, they had no idea if they would come through; no clue they would succeed in their mission. The miracle was only evident in retrospect. Neither do those of us working to establish a palliative care culture know if we will succeed. We persist because we believe passionately in what we do, and believe that what we do matters, just as the boat captains who set sail for Dunkirk believed in their unlikely mission.

As Mark Rylance’s character said when he refused to obey a shell shocked soldier he had rescued, who ordered him to “go home” rather than continue the mission to Dunkirk, “there will be no home if we don’t do this.” Likewise there will be no home, no decent society, if governments don’t support palliative care programs wherever they are needed.

Our teachers and mentors are, of course, our patients, those who rely on our skill and commitment to have as many quality days as possible in the time left them, even when hope for a “cure” is faint. As a volunteer, I am privileged to accompany dedicated palliative care teams in Uruguay, Kampala, Kerala, Buenos Aires, Minsk, and San Diego to visit patients. I can’t help but imagine how those patients and families’ lives would be without those visits, knowing we are seeing only a handful of those in need. It’s the ones we can’t see, the invisible ones in the shadows, who keep me doing what I do, who send me out in my little boat each and every day, to advocate for global palliative care culture, trusting in the One who calms the waters when necessary.

Ocean’s Bridge

One thing “Dunkirk” does not mention, was that King George VI had called for a National Day of Prayer the day before the rescue mission began. According to columnist John Williams, “In a national broadcast he instructed the people of the UK to turn back to God in a spirit of repentance and plead for Divine help.  Millions of people across the British Isles flocked into churches praying for deliverance and this photograph shows the extraordinary scene outside Westminster Abbey as people queued for prayer.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Two events immediately followed. Firstly, a violent storm arose over the Dunkirk region grounding the Luftwaffe which had been killing thousands on the beaches. And then secondly, a great calm descended on the Channel, the like of which hadn’t been seen for a generation, which allowed hundreds of tiny boats to sail across and rescue 335,000 soldiers, rather than the estimated 20-30,000. From then on people referred to what happened as “the miracle of Dunkirk”.”

Palliative care doesn’t command dramatic, desperate, Days of Prayer and heroic rescue missions. Its miracle is wrought daily, in Ordinary Time, through the countless anonymous acts of compassion provided at the bedside. Their cumulative transformative power will be visible only decades into the future, when palliative culture has taken root and the service is a taken for granted by everyone who needs it anywhere on earth.

Palliative Care: A Life- And Choice-Affirming Alternative For Patients And Families Facing Serious Illness

Newsflash: Medially assisted dying and euthanasia are not the only options for patients facing life-limiting illnesses and serious pain. Nor are endless treatments with inconclusive or non-beneficial results, which might cost patients and families their life savings. There is another choice that aligns better with many individual and cultural values and aspirations for quality of life: palliative care.

Palliative care covers many bases. It affirms life and supports the dignity of patients until natural death. It provides services to families of all kinds and caregivers of choice, including through bereavement, and it preserves personal autonomy. Mainstreamed under universal health coverage, palliative care is the penultimate “both/and” for patients and families facing life limiting illness. Medical science and public health have created the modern, wealth induced, dilemma of mass longevity. Have we really evolved to the point that the demos (body of voters) feels it has to legalize medical killing as the only “liberty” option to resolve the inevitable pain and suffering of extended mortality?

Palliative care is a modern, secular practice, not a religious or denominational approach, although it provides spiritual care if desired. Its ethos based on life, dignity, and family, is grounded in the human rights movement, whose cornerstone document is the Universal Declaration of Human Rights. Palliative care can lay claim to all the foundational concepts in that covenant, which is why many human rights experts now call palliative care a human right for all patients facing serious illness, from neonates to the frail elderly. It is stipulated as a right in the 2015 Inter-American Convention on Protecting the Rights of Older Persons, as well as the brand new Constitution of Mexico City.

The term pro-life can be reclaimed and applied to palliative care, because it “affirms life and regards dying as a normal process” according to the World Health Organisation definition. We can also re-appropriate the term “pro-family,” because palliative care teams support all family configurations, and “offers a support system to help loved ones and caregivers cope during the patient’s illness and during their own bereavement,” also according to the WHO definition.

While we are at it, let’s also reclaim the term “pro-choice” because, when properly mainstreamed in a health system, palliative care gives patients and families a real choice about whether to continue treatment that may be non-beneficial. Where assisted dying and euthanasia are legal, palliative care gives patients a real choice concerning whether to not to end their lives. In fact palliative care allows patients to plant, prune, and harvest their own unique Decision Tree of Life together with the community of their choice.

Palliative care is pro-dignity because it supports autonomy, which is undermined, and cannot be effectively operationalized when the only available options are futile treatment, abandonment (“there’s nothing more we can do”), or legalized assisted dying. Autonomy in any meaningful sense exists only in the context of real choice. Palliative care represents the via media, the middle way that allows patients and families to steer a customized course between the treacherous shoals of futile treatment, medical abandonment, and assisted dying.

The media are full of heartfelt cries (cris de coeur) in favor of legalizing medically assisted dying, of patients and families sharing excruciating stories of being condemned to suffer severe pain and multiple indignities by callous politicians, doctors, and religious fanatics. They have a point, given that too few families and communities have access to quality, affordable palliative care. Stories about patients and families helped in their final months, days, years by palliative care teams are far and few between, no matter that they number in the tens of thousands, and can be told be providers and patients all over the world. But medically assisted dying will continue to gain political traction and social acceptance in modern democratic cultures led by public opinion, until patients, providers and families are as effectively vocal for palliative care as their counterparts for assisted dying.

Ensuring that palliative care is available as air, in the words of the inimitable Ugandan advocate Dr. Jacinto Amandua, means the palliative care community must get our political ducks in a row, something clinicians are rarely willing to do. Palliative care folks must stride purposefully out of their comfort zones to make the necessary alliances with non-medical professional colleagues. Patients’ stories have to get published, policies drafted, budget lines funded, and the providers educated and accredited.

What’s not to like about such a modern, evidence based, pro-life, pro-choice, pro-family, pro-dignity, and pro-autonomy healthcare option that’s not against anyone, and sees no other movement as “the enemy”? Palliative care’s only mission is to provide impeccable clinical, spiritual, social, and existential support and affirmation at the most vulnerable, sacred, fearful, and stressful time imaginable. It’s past time to take palliative are to the demos, where it belongs.

Sótéria (Σωτηρία): A philosophical take on policies to hasten dying

Most palliative care folks know that the word “palliative” derives from “palliare” or “cloak.” I just learned that the original “pallium” was the cloak worn by ancient philosophers, some of whom, like Hypatia, were women. These philosophers wrote about the ethics and justice of “the political” — the nature of life in common — because they knew that the quality of political life is directly related the sustainability and safety (sótéria) of the demos, or the people. In Greek mythology, Sótéria (Σωτηρία) was the goddess of safety and salvation, deliverance, and preservation from harm. From the philosopher’s perspective, policies to hasten dying or mainstream assisted suicide endanger the long term safety and health (also etymologically related to salve) of the polity. The alternative is palliative care, a form of slow medicine, which like the slow food movement reflects a contemplative, sustainable, whole-person approach that challenges whole-society addictions to non-person centered values such as efficiency and profit. In founder Dr. Dennis McCoullough’s words, “Slow medicine is not a plan for getting ready to die. It is a plan for understanding, for caring, and for living well in the time that is left.”

The problem for commodified, “anti-ageing” and ageist cultures, is that dying of cancer or chronic disease is time-consuming, expensive, and inefficient, in other words, an anathema to the modern, rights-conscious individual. Adding insult to injury, physical decline, particularly when combined with dementia, tends to be undignified, inconvenient, and often terrifying for both patients and caregivers. “Death with dignity” presents a cost-effective and painless solution to all concerned. What’s not to like about a practice that will keep the ever-increasing population of older persons suffering from multiple conditions from falling through the yawning cracks of healthcare systems that are not fit for purpose?

anti ageing

The palliative care and assisted suicide movements are distant cousins, both conceived in response to disease-centred health care systems that benefit industry rather than individuals or communities. Slow medicine can’t compete with hastened dying’s seductive promise to help patients check out as fast and painlessly as possible, though. The medical community worldwide is well and truly split over whether the state should regulate professional participation in patients’ and relatives’ requests for hastened death, with the organised palliative care movement largely recommending that governments ensure palliative care is widely available before  authorising physician assisted suicide. Integration of palliative care into health care systems, though, requires policymakers to engage in cost-benefit analyses that don’t necessarily favour slow medicine. The assisted suicide movement on the other hand has the cultural wind in its sails, and almost no political opposition, even though recent studies show that the need for suicide, or even killing on request due to (physical) suffering in palliative patients drops towards zero when care is provided by qualified personnel.

The sótéria lens show us though that, once extended to a rule, a compassionate choice in an individual case institutionalises the original system deficits that inspired the private decision to request hastened death. (Read it again.) Put differently, the political stakes of normalising assisted suicide policies are high for societies wanting to build person-centered healthcare systems. Policies that entrench medically hastened death as a “compassionate choice” are actually entrenching indifference to families struggling with inappropriate care as they attempt to maintain the value and dignity of human life until its natural end.

Normalising physician assisted suicide 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 than see their living through with palliative care, deny the irreducible relationality of humanity. 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 already enjoyed their day in the sun. Individuals who request others to assist their suicide rather than supporting policies to mainstream palliative care, are guilty only of personalising the normative nihilism that characterises western modernity.

Palliative care, as the “slow medicine” that helps patients, families, and communities carry the burden of terminal illness together, living with acceptable quality until natural death, challenges the mistaken perception that the ancient philosopher’s pallium is irrelevant to the modern age. In its vocation to relieve pain and distress, rather than to extinguish the person, palliative care dignifies the weakest among us, and ensures the sustainability and safety, the sótéria, the salvation, of the demos.

Palliative Care: the Pearl of Great Price

One reason global palliative care advocacy is so challenging is because it implies systems change. Palliative care is an approach, an ethic, a multi-disciplinary sub-speciality, not just a new element that can be added and stirred into health systems. Palliative care doesn’t accommodate itself to the existing global health ideology, but challenges the ground of that ideology, which is fixated on fixing, on making populations fit to contribute to “development.” From the development perspective, the distinct ethics of palliative care are perverse, claiming the inherent value of each person and family, from fragile neonate to frail elderly, those who don’t contribute to the bottom line.

More subversively still, palliative care advocates request that governments subsidize palliative care as part of the public health system, as a human right, rather than relegating the service to the mercy of charities and private philanthropic organisations.

Needless to say, such absurd petitions fly in the face of rational public policy and budgeting, particularly in this era of “scarcity” and “crisis’.

Why do we stubbornly insist that palliative care is the pearl of great price? Pearls are created once an irritant such as a parasite, or grain of sand — something akin to a splinter — makes its way into the lining of a mollusk or shell. As a defense mechanism, a fluid is used to coat the irritant. Layer upon layer of this coating, called ‘nacre’, is deposited until a lustrous pearl is formed. Palliative care advocates are irritants to systems largely focused on treatment, systems whose organising principle decrees that patients be abandoned when cure is no longer an option.

Palliative care invites us to explore areas of life beyond strict utility, as defined by ordinary standards in society, and the ultimate limits of life. Such exploration is only possible if we recognise there can be great value in what is not useful (Vanistendael 2007) How can what is not useful be valuable, and how can palliative care nurture that value, pouring layer upon layer of coating/care/pallium, on the suffering of patients and families, to produce a pearl of great price that can actually support the sustainable development of communities and nations?

The distinct social physics of palliative care dis-place vulnerable individuals from the margins to the center of public policy, shifting the political center of gravity from a rationality of control and domination of the body and its diseases, to one of accompaniment and equality in vulnerability. In political terms, this shift represents the evolution from an oligarchic monopoly of knowledge/power towards a radically democratic and cooperative logic that can live into the questions, to paraphrase Rilke, because they are lived in common.

Palliative care is the stance of being comfortable with the unknown, a stance that leads to the development of confidence, resilience, and empowerment in patients and families receiving the best care. The fact that we are all vulnerable, all subject to suffering, old age, and death, makes strategies of avoidance through domination and control both futile and painful for all parties, particularly those outcast by serious illness. An individual’s, family’s, community’s, capacity to embrace the unknown is transformative and evolutionary, and can be expressed as the classical political virtues of magnanimity, honesty, courage, and friendship. These virtues buttress resilience and sustainable development.

The meta-ethic of palliative care aligns with Jesuit priest and paleontologist Pierre Teilhard de Chardin’s definition of evolution: the process whereby the universe becomes conscious of itself. Indeed, palliative care is a discipline that demands its practitioners become conscious of themselves in order that they may be properly vulnerable to the vulnerability of the other. By definition, becoming conscious of oneself requires the courage to be with, to live into the truth of suffering, no matter how unpalatable or dis-grace-ful. Only then can pathology be transformed, alchemized, healed by grace, etymologically related to gratitude for Being itself.

The universe only becomes conscious of itself through unmediated and intimate encounters with its bare heart, which reveals itself in the particular, the actual, the enfleshed – not the ideal or abstract –being of the suffering other. Such is the global pandemic of untreated pain, the collective being of the suffering other that is our own self. Approached with courage, friendship, and honesty, the shared pain is transformed and eventually healed.

This is the pearl of great price that is palliative care.

Palliative Care: An Evolutionary Turn in Dark Times

The English word “palliative” derives from the Latin palliare, or “cloak”. Palliative care teams, manage the bio-psycho-social and spiritual suffering of patients and their families facing serious illness and end of life by “cloaking,” or alleviating it with evidence based care. The severe pain experienced by such patients is often a complex synergy of physical, emotional, spiritual, and social issues that few modern medical students who do not study palliative care are trained to address or treat.
Where palliative care is taught as part of the professional curriculum, it graduates palliative care teams that include specially trained doctors, nurses, pharmacists, social workers, and spiritual care advisors. They are trained to address these dimensions of severe pain, providing care beyond cure, as necessary. They take up the slack when doctors’ trained to treat  the disease rather than the patient, concede “there is no more we can do.” Palliative care is always the “more” that is available to patients and families.