The Stakes of Not Endorsing the New IAHPC (Consensus Based) Definition of Palliative Care

“If you wish to converse with me, define your terms.” Voltaire

“Better a diamond with a flaw than a pebble without.” Confucius

Consensus. 

It is a winter of discontent within the palliative care community regarding the new, consensus based definition of palliative care developed by the International Association for Palliative Care, in collaboration a multi-disciplinary team of palliative care experts, general practitioners and caregivers from 88 countries.[1] The purpose of the exercise, described in detail in a forthcoming article, was to bring rigor and standardization to the proliferation of definitions that characterize our rapidly growing field.

What Dr. Eduardo Bruera calls “pallilalia,” or a lot of well meaning talk about palliative care with insufficient implementation, is a feature of the palliative care Babel.[2] Pallilia feeds on proliferating definitions, and can serve as an excuse for official inaction that leaves patients with no services, and in egregious preventable suffering. eduardo

Recognising the need for an updated, fit for purpose in the 21st century definition, IAHPC staff with the requisite expertise conducted the consensus process that gave rise to the new definition. The result represented widespread adherence to certain non-negotiable principles and practices, some of which are identified in the original WHO definition. According to Liliana de Lima, who oversaw and implemented the process, “The new definition dares to describe PC as the relief of human suffering not only linked to end of life. This is a bold and humane concept. The WHO definition of palliative care still leaves many behind. These are patients and families identified by the 2018 Lancet Commission Report, who endure preventable, serious, health related suffering.”[3]

The 2030 Sustainable Development Agenda, which replaced the Millennium Development Goals, pledged to “leave no one behind.” All UN member states committed themselves to developing policies that reflect this ethic. The new PC definition’s inclusion of serious health related suffering and key populations, broadens the criteria for palliative care provision and will leave fewer patients behind.

The definition’s crafters concede its imperfections. In fact, the consensus process excised the word “impeccable,” which modifies “assessment and treatment of pain.” This move was based on the recognition that such a Eurocentric imperative is unattainable in resource-limited settings. Light enters through the cracks of the new definition’s imperfections, to paraphrase Rumi.

Dissensus

The fact that some individuals in the boards of a few organizations, recognizing this imperfection, have explicitly refused to endorse the new definition because they don’t agree with it in its entirety, while the boards of many other organizations (global and regional) have endorsed it, reveals the tensions that characterize our still evolving ‘mustard seed’ discipline of palliative care.[4] Predictably, the sheer diversity of views and commitments as regards the meaning of “palliative care,” both triggered the project to produce a consensus definition, and the subsequent dissent.

tweedle dee

Yet the policy process demands basic definitional consensus, and participating in a broad consensus, by definition, entails giving up a measure of control. The words ‘consensus’ and compassion share an etymological ethos, the first meaning to ‘feel together’ and the second ‘to suffer together.’ People often have to suffer together to reach a broad consensus. The process, especially among experts, requires an uncommon degree of humility and maturity, qualities still under construction in our rapidly growing, global discipline. But refusing to endorse the new definition is a textbook case of making the perfect into the enemy of the good.

A characteristic of palliative care pioneers and leaders is that they tend to be mavericks: visionaries who have struck out, often alone and with no resources, leaving the shores of safer choices for professional scorn and isolation. Care for whom there is no cure is a vocation that, once found, does not easily let go. Palliative care advocates’ often uncompromising, compassionate engagement with mortality does not lend itself to compromise definitions. Such systematization calls for ‘giving up’ elements of what might constitute one’s very strongly held identity.

The stakes

Palliative care’s survival as a globally relevant discipline now depends on standardization of basic practices, and integration into adequately funded policies. Recent years have seen UN member states making unprecedented multi-lateral commitments to provide palliative care as part of the spectrum of Universal Health Coverage and Primary Health Care. They must now begin to design and implement national policies and regional conventions that include palliative care for all patients who need it. The breadth of these policies: who they serve, where, and how, is captured in whatever definition of palliative care is inserted in the document to be approved in Parliament. That same definition determines the level at which the program is funded.

An example of the stakes of a strong definition are as follows: the Open Ended Working Group on Ageing at the United Nations in New York is entering into its 10th session in April 2019, calling for submissions on palliative care as a human right of older persons as part of the process toward drafting a binding international convention. The majority of countries reported in their preliminary surveys to the Open Ended Working Group last year that no official definition of palliative care exists in their government policy handbooks.

Following the Declaration of Astana 2018,[5] which updated the 1978 Alma Ata Declaration, countries will now have to put numbers on their commitments to fund and propagate palliative care throughout the primary health care system. Doing so will identify the limits within which services are provided or restricted, providers are accredited and salaried, and medicines rationally available, etc. Success will hinge on an all hands on deck, all shoulders to the wheel effort. Dissension provides policymakers with an excuse to reject a good, although perhaps not perfect, definition. Conceding imperfection for the purposes of rational policy development does not imply conceding the right to argumentation. Academic debate over interpretation, substance and process is always legitimate.

While it is key to develop clinical palliative care skills, supported by research, conferences and literature, it is also key to distribute these as equitably as possible throughout the world. Failure to do so undermines the ethical underpinnings of palliative care. Unsurprisingly, the global north is producing many of these clinical development resources, generally in English, while providers in the global south develop distinctive practices that merit more widespread exposure and translation. The new IAHPC curated definition included the systematized integration, through a consensus based process, of the voices of providers from the global south, a process change that provides at least a marker of legitimacy.

The IAHPC definition meets rigorous normative, technical, academic, and policy standards. It should be broadly endorsed, for pragmatic reasons, and then the nuances debated widely in the literature. Palliative care is a ‘both/and,’ not an ‘either/or’ discipline. A strong, standardized definition for policy purposes can exist, even provisionally, alongside a lively intellectual debate. It’s not a zero sum game: the one does not exclude the other.

Palliative care practitioners are accustomed to accompanying patients and families at what, for many, is the most difficult and challenging time in their lives. Surely we can accompany one another as colleagues during this challenging time for palliative care. The discipline must step into its newly defined role as an integral part of Primary Health Care, and participate in the multi-lateral, multi-stakeholder formulation of palliative care as a human right for vulnerable populations (indigenous populations, children, prisoners, persons with disabilities, older persons, inter alia). An expectation- standardizing definition should be broadly endorsed as soon as possible so countries can begin to deliver on the commitments made in international agreements.

Our patients and their families have been waiting long enough.

References.

[1] IAHPC. Global Consensus based palliative care definition. (2018). Houston, TX: The International Association for Hospice and Palliative Care. Accessed 1/4/19.
Retrieved from https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/

[2] Bruera, E. The development of a palliative care culture. J. Palliat. Care 2004, 20, 316–319. [PubMed

[3] Knaul FM, Farmer PE, Krakauer EL, et al, on behalf of the Lancet Commission on Global Access to Palliative Care and Pain Relief Study Group. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. Lancet 2017; published online Oct 12. http://dx.doi.org/10.1016/S0140-6736(17)32513-8

[4] See WHPCA responds to new IAHPC definition of palliative care http://www.thewhpca.org/latest-news/item/whpca-responds-to-new-iahpc-definition-of-palliative-care. EAPC Invites Comments from Members Re Proposed New Global Consensus Definition for Palliative Care: https://www.eapcnet.eu/publications/eapc-invites-comments-re-proposed-new-global-consensus-definition-for-palliative-care

 

 

 

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Children’s Palliative Care and the Feast of the Holy Innocents

December 28, 2017

Today is the Feast Day of the Holy Innocents, commemorating the legendary infanticide by King Herod’s soldiers, in the first century, of all male infants in Bethlehem. According to St. Matthew (2:13-18), Herod ordered the massacre to get rid of the newborn “King of the Jews,” a potential rival. Thanks the intelligence of an angel, the baby Jesus and his family, were spared (for the time being at least), but like so many children today, were forced to become refugees, and fled to Egypt. He was “rescued like a bird from the fowler’s snare,” (Psalm 124).

The other babes (the Innocents) and their parents, were the collateral damage of Herod’s paranoid jealousy and rage. The structural violence of hunger, disease, and war that kills 15.000 children every day, and millions every year, is the modern version of the Massacre of the Holy Innocents. The World Health Organisation statistics are chilling — “under-5 mortality among children born in the poorest households is on average twice that of children born in the wealthiest households. Eliminating this gap between mortality in the poorest and wealthiest households would have saved 2 million lives in 2016.”

Catherine was one of the Holy Innocents who survived the structural violence of lack of essential healthcare until she was eleven, but died at night at home, of renal failure when a tumour (which could have been surgically removed had adequate services been available) blocked her kidneys. Mercifully, Hospice Africa Uganda (HAU) provided her with palliative care and oral morphine to ease her pain and breathlessness. I met Catherine on a home visit in Kampala last time I stayed with Dr. Anne Merriman, founder of HAU, and a former Medical Missionary of Mary.

Dr. Anne, as she is known, is credited with introducing oral morphine to Africa and teaching palliative care providers, mainly registered nurses, to legally prescribe and use it.The HAU team brought Catherine’s family money for food and an old donated wheelchair because she could no longer walk and was confined to the couch. At least the wheelchair would allow her to sit up and go outside, get some fresh air, and see what was going on in the neighbourhood. After all, improving quality of life is what palliative care is all about! With no sidewalks or accessible streets, there was no chance of her being pushed far, though. In order to get to the house, we had to manoeuvre the chair down a very steep hill, which even the hospice car could not descend because it was so filled with deep ruts.

The global need for children’s palliative care is desperate: a recent Lancet Commission Report found that “Every year almost 2·5 million children die with severe health related suffering (SHS) […] in low-income countries at least 93% of child deaths associated with SHS are avoidable…The cost to cover morphine-equivalent pain treatment for all children younger than 15 years with SHS in low-income countries is $1 million per year. This is a pittance compared with the $100 billion a year the world’s governments spend on enforcing global prohibition of drug use.”

Until governments finally end, rather than continue to fund, the structural violence that generates such preventable suffering, and until they make children’s palliative care (along with prevention and treatment) freely available through Universal Health Coverage, every day is a holocaust of the Holy Innocents in slow motion. Today is just a good day to remember that, and recommit ourselves humbly to the work of alleviating the suffering, one patient and family at a time.

Dr. Anne Merriman with Catherine before her death.

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

Religionless Palliative Care Comes of Age

December 22, 2017.

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

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

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

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

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

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

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

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)

African Palliative Care and the Ethos of Hospitality

African palliative care, according to Hospice Africa Uganda (HAU) founder Dr. Anne Merriman, is based on an ethos of hospitality, which manifests as a unique blend of indigenous and Benedictine spirituality. This ethos of hospitality resonates in the universal Ugandan greeting, “You are welcome”… welcome into my home, however humble, however grand. The Benedictine strain comes from Dr. Anne, who was a member of the Medical Missionaries of Mary (MMMs), a religious order that lives by the Rule of St. Benedict, which is rooted in welcoming all guests (at the monastery or convent) “as if they were Christ.”

Faith, although not pegged to a specific denomination or spirituality, is coded into the DNA of African palliative care. Hospice Africa begins the day with 5-10 minutes of prayers for students and staff alike: hymns are sung, drums drummed, and announcements made in community before the serious business of tending to the poorest of the poor with life limiting illness begins.

According to Dr. Anne, “in palliative care, we see our relationship to God through our relationship to people. Our prayer is our work: not something we necessarily have to do in a church.” In her orientation talk to new hires, she gives the mustard seed history of Hospice and defines “integrity” as “the virtue of basing action on principles,” the principles of Hospice being to always place the patient and family at the center of our actions in all domains. Quoting Bishop Dowling of South Africa, she says that hospice ethos “reflects how you ´[staff] relate to the patient, family, and community.”

Dr. Anne lives her ethos of hospitality, welcoming the thirty odd members of the incoming class to her house for a party that features speeches, introductions, dancing, great food, and a final candle lighting ceremony, which reminded me of the Easter Saturday vigil service. This universal mass begins with the lighting of the large paschal candle, symbolising the light of the resurrection in the darkness of the world. Indeed, Dr. Anne tells the students that “when we relieve pain, there is a resurrection for that person. In our work, there are many little resurrections before the big one!” Even the cake is decorated with a palliative care prayer, “ Welcome Class of 2017: May you grow in dedication to the suffering.”

Hospice Africa Uganda is the “Mother House” that has spawned palliative care services in more than thirty, mostly sub-Saharan, African countries, growing dedication to the suffering in all the students who come through the doors of the Institute. The current first year class contains students from several remote districts of Uganda, Malawi, Zimbabwe, Kenya, and Botswana. One student, John Bosco RN, came from Adjumani, the site of the largest refugee settlement for people fleeing the conflict in South Sudan, in order to learn to provide palliative care for his patients in the camp health center. Patients diagnosed with cancer and HIV/AIDS have no palliative care except what little is available to both refugees and locals at the overstretched local hospital. His training is supported thanks to the support of Global Partners in Care and the Palliative Care Association of Uganda.

Challenges of African Palliative Care Advocacy

From my perspective as a palliative care advocate in all the UN Organisations, including the Commission on Narcotic Drugs in Vienna, it is sad that the Ugandan diplomats seem unaware of the tremendous leadership their country is taking in this area of healthcare for the most vulnerable and marginalised populations. This leadership is an example of best practice towards implementation of the UNGASS2016 on the World Drug Problem, as well as achievement of several of the Sustainable Development Goals of Agenda 2030. The Ugandan government policies and laws that allow specially trained nurses to prescribe morphine, for instance, are unique in the developing world, and should be showcased.

Uganda could legitimately exercise its bragging rights about palliative care services, citing up to date studies that show the efficacy of nurse prescribing of morphine with no diversion to illicit channels. The international community needs Uganda to serve as beacons to other countries trying to improve access to controlled medicines for palliative care. In biblical terms, the Foreign Affairs ministries of Uganda and Kenya, to name only two of the countries leading in providing access to oral morphine for palliative care and pain relief, are hiding their lights under a bushel — the bushel of their diplomats’ lack of awareness.

Few if any, diplomats serving in Vienna, New York, and Geneva know what palliative care is, and what is required for progress towards this essential service under Universal Health Coverage, a policy priority for the World Health Organization. Once the national and regional palliative care associations make them more aware, the Ugandan missions can share the ethos of African palliative care throughout the UN system, explaining how the African palliative care ethos aligns with the Sustainable Development Goals. leaving no-one behind, and prioritising patients and families in the most vulnerable households. Through its communicative and clinical ethos, palliative care can help households avoid catastrophic out of pocket expenses and avoid the health poverty trap driven by weak public health systems staggering under the burdens of HIV/AIDs and AIDS related cancers.

Dr. Jacinto Amandua, a retired Uganda MoH staffer, cites the challenges of Ugandan palliative care advocacy as the constant rotation of ministers and government officials, few of whom are palliative care literate. He recommends an individual approach “like catechism,” and tells students to “go to where the people are — in the parliament, in the churches.“ Dr. Amandua’s famous and very quotable mission is to make “palliative care as available as air.”

Fortunately, the international normative framework stipulating palliative care and access to pain relief as a human right, is now in place. This international legal framework gives palliative care providers legal cover (a pallium) for their essential work even when national governments change. The challenge of African palliative care organisations is to get governments to pass funded policies to sustain the ethos of hospitality when patient loads increase, as they inevitably will, and charitable donations fluctuate. May the ethos of hospitality migrate to the highest levels of government!

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.