New Wine in New Wineskins: Political Legitimacy and the Stakes of Endorsing the New IAHPC Definition of palliative care Part II

Read Part I here. The consensus definition of palliative care recently published by IAHPC is new wine in a new wineskin, and coming in for some interesting criticism on social media from various senior palliative care pioneers. The IAHPC welcomes this debate, and invites critics who wish to participate in it to take a close look at the process (the new wineskin) used to shape and contain the new definition (the new wine). That process eventually commanded the consensus of a broad spectrum of experts, and has gained the endorsement of hundreds of individual and institutional endorsers. See the IAHPC website to read the definition and join endorsers from around the world!) These organisations themselves represent even more hundreds, if not thousands, of patients, providers, and supporters.

I am writing this blog with my political theorist hat on, focusing on the concept of democratic legitimacy based on discourse ethics. The high level of endorsements is a reflection of the discourse process IAHPC used explicitly to curate the final definition, a process that confers a measure of democratic legitimacy absent from any “expert opinion,” no matter how experienced.

Palliative care ethics, which are communicative or discourse ethics, are consistent across all domains: from the bedside to the boardroom. Discourse ethics rely on principles of equality and truth-telling. Everyone involved in the care of the patient and family, including the patient and family, has an equal voice in the community of caregivers – the palliative care polis. This equal voice is what the ancient Greeks, who claimed to have invented democracy, called isegoria (ise – “equal” – and agora in the “public space.”) Equal voice of the demos — all affected — confers legitimacy.

A broadly endorsed definition has practical value for the palliative care movement in resource challenged countries: it is essential for research and quality service development. It is noteworthy that critique of the definition is coming from individuals and organisations located at the source of the original hospice movement, the resource rich, European, “motherhouse.” Palliative care in those countries is not the resource dependent, fledgling profession it once was, struggling for survival, as it is now in the global South.

The identities of all the parties involved in what appears to be this “family quarrel” are important. The identities of individuals and organisations of the palliative care movement in the developed countries (the old wineskins) color their critique. They would incur no professional cost by generously expressing solidarity and endorsing the new definition. Their payoff would be incalculable: the suffering of millions currently unreachable by non-existent palliative care services relieved. Those experiencing unrelieved, preventable suffering in countries where palliative care is undeveloped are the true victims in this winter of discontent over the proposed definition.

In my limited experience, the history of the growth and development of global palliative care exemplifies the best qualities in the human family. Practitioners from many different countries and contexts generously share their clinical skills, ethos and experience, learning and growing from one another. The deepest desire of this learning and practice community, its organizing principle – its rationality – is to relieve preventable suffering. To help the patient ‘go gently’ into the night.[2]

This is the palliative care ethos, the physics of grace I have been privileged to witness in the global South: in Africa, India, and Latin America. It’s seeds originated in the best qualities of the more clinically, socially, and economically advantaged European hospice movement.

The consistent palliative care ethics I referenced earlier entail consultation of those most affected (the demos). These include an organisation’s membership, most of whom are providers, patients, and/or families. IAHPC followed a rigorous consultation process of expert core groups, and its global membership eventually contributed to the consensus through a transparent process of compromise and negotiation.

The legitimacy of any critique of the definition from a representative organization depends on following a similar process of consultation and negotiation. Participants in these processes incur significant costs, mostly in terms of time, as the process is iterative, not a one shot deal, like a vote. Those who participated in the IAHPC consensus process would have calculated that the final product was worth the cost.

To sum up: the legitimacy of the IAHPC consensus definition derives from the yearlong, iterative consultation process itself, and from the diverse pool of participating experts: the x and y axes. The expanded field compensates for individual and in-group biases of short-term, closed group processes that tend to produce system level errors. Of course, levels of complexity and information increase as the circle widens, as the sphere expands, generating more sustainable knowledge and supporting development of the field as a whole. It is this end that the IAHPC definition was designed and curated to serve.

[1] Mark 2:22

[2] Dylan Thomas ‘Do not go gently’ Collected Poems

How does palliative care fit into the 2030 Agenda for Sustainable Development?

Global Palliative Care

The Problem — the absence of palliative care delivery in the context of population ageing and NCDs

Rapidly ageing populations as people everywhere live longer mean increasing numbers of frail elderly needing care. Likewise, the increase of chronic and noncommunicable diseases (NCDs), in addition to the persistence of communicable diseases such as as HIV/AIDS and tuberculosis, drive the need for publicly provided palliative care.[1] Between 2015 and 2050, the population of persons aged 60 years or older is projected to more than double, while those aged 80 years or older is projected to triple.[2] Between 2015 and 2030, the fastest population growth is expected in Latin America, the Caribbean, Asia, and Africa. In 2015, NCDs accounted for 60% of the global disease burden (in disability-adjusted life-years), compared with 43% in 1990.

More than 70% of deaths in 2015 were attributable to NCDs, and more than 75% of these…

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How does palliative care fit into the 2030 Agenda for Sustainable Development?

The Problem — the absence of palliative care delivery in the context of population ageing and NCDs

Rapidly ageing populations as people everywhere live longer mean increasing numbers of frail elderly needing care. Likewise, the increase of chronic and noncommunicable diseases (NCDs), in addition to the persistence of communicable diseases such as as HIV/AIDS and tuberculosis, drive the need for publicly provided palliative care.[1] Between 2015 and 2050, the population of persons aged 60 years or older is projected to more than double, while those aged 80 years or older is projected to triple.[2] Between 2015 and 2030, the fastest population growth is expected in Latin America, the Caribbean, Asia, and Africa. In 2015, NCDs accounted for 60% of the global disease burden (in disability-adjusted life-years), compared with 43% in 1990.

More than 70% of deaths in 2015 were attributable to NCDs, and more than 75% of these deaths occurred in Lower Middle Income Countries (LMICs).[3] NCDs such as cancer, dementia, cerebrovascular disease, and lung disease cause a large proportion of Serious Health Related Suffering (SHS). They are expected to cause increasing SHS as LMICs undergo epidemiological transition. Lack of palliative care for patients and families experiencing SHS is a risk factor for stress-induced NCDs in caregivers/survivors.

The global movement to achieve UHC, and SDG3, which focuses on ensuring healthy lives and wellbeing for all people and at all ages, provides new opportunities to expand access to palliative care at a time when need is increasing rapidly.

Current palliative care funding models consist of a patchwork of charitable donations to largely private and faith-based institutions, dependent on donor benevolence rather than taxation or programmed efficiencies.[4] This model is unsustainable and unfit for purpose in the context of global ageing populations and the rise of chronic, non-communicable, diseases.

Publicly funded palliative care services integrated into primary care under Universal Health Coverage, an objective under Target 3.8 of the Sustainable Development Goals (SDGs), is both ethical and sustainable, a win win budget combination. Publicly provided palliative care aligns with the 2030 Agenda, adopted by all UN member states in 2015, and offers a “best buy” for member states. According to the 2018 Lancet Commission Report, “Alleviating the access abyss in palliative care and pain relief— an imperative of universal health coverage,” most governments, including in the LMICs, can afford to make that choice and provide what has been defined as an “essential package” of palliative care to address serious health related suffering (SHS). See

Lancet map
Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report 2018

How can publicly provided palliative care under Universal Health Coverage support progress towards Agenda 2030? Development experts agree that impoverished, unhealthy populations are a brake on sustainable development. To remove that brake, they formulated Target 3.8 of SDG Goal 3: ‘Achieve universal health coverage, including financial risk protection, access to quality essential healthcare services and access to safe, effective, quality and affordable essential medicines and vaccines for all’. The World Health Organization (WHO) definition of Universal Health Coverage (UHC) includes ‘palliative care’ as an ‘essential health service’. The safe, effective, quality, and affordable essential medicines needed for palliative care include internationally controlled medications such as morphine, unavailable in more than 80% of the world.

Improving availability of internationally controlled medicines such as oral morphine for the release of severe pain and breathlessness, aligns with the Outcome Document of the UNGA Special Session on the World Drug Problem, as well as with the opinio juris of several human rights experts including the Special Rapporteurs for Health, and the Special Rapporteur for the the Right to be Free from Torture. Internationally controlled essential medicines, which fall under Target 3.8, are the cornerstones of palliative care.

Publicly provided palliative care helps end poverty (Goal One)  Provided at the community level, palliative care (which represents a small upstream public health investment) reduces catastrophic out-of-pocket medical expenses to the family, and institutional costs (downstream spend) to the government and health services. In many countries, where patients present too late for curative treatment to be beneficial, scarce household and public sector resources that might otherwise be spent on ineffective or inappropriate treatments and medications are better spent on appropriate pain relief and psychosocial services that improve patients’ quality of life, and in many cases allow them to return to income generating activities for their household.[5]

This low cost upstream investment helps households avoid what health economists call ‘the medical poverty trap’. Furthermore, when the household breadwinner loses the ability to provide income due to serious illness or caregiving burdens, families are often unable to work, buy food, farm their land, and meet the cost of school fees. Many have to sell lands and other resources to pay catastrophic out of pocket medical expenses, further escalating hunger, malnutrition, and intergenerational poverty.[6]

Filling the 80% public health palliative care gap with all deliberate speed, particularly in low and middle income countries, could give an extraordinary boost both to the world’s material and spiritual economies. Seeing investment in health services as an investment in development rather than as a cost, places persons, and the common good, at the center of policies, ensuring that no-one is left behind.

Goals Two (Zero Hunger) Three (Better Health) and Four (Education) Five (Gender Equality ad Empowerment) and Six (Decent Work) Meeting the caregiver deficit is just one example of how investment in the palliative care workforce can grow national economies. In 2015, the International Labor Organisation estimated a massive shortfall (3.6 million globally) in the number of workers needed to staff care homes for growing populations of older persons in all countries.[7] This number refers only to care workers, a fraction of the palliative care workforce, which is multi-disciplinary.

Countries that are serious about achieving the SDGs will invest in the wellbeing of the millions of unpaid (mostly female) family caregivers by providing them with a basic income and training in essential caregiving skills. This would support those who leave jobs or school to look after a terminally ill loved one (removing at least two people — the patient and caregiver — from the workforce). Employers will ensure that those want to stay in their jobs, or return once the caregiving is over, can access this option. Costa Rica, with its “Ley de Cuidadores is the only country with such a system at the moment.

Supporting family caregivers through subsidies and training will give millions of newly “employed” adults the skills they need to carry out the essential work of tending to a very sick, very fragile family member. It represents upstream public health prevention of stress induced non-communicable diseases such as cancer, diabetes, substance use disorder, and heart disease. It provides them with disposable income to spend on basic needs, and, in many cases for payment of school fees, which are forfeit when family breadwinners lose employment due to illness.

The wherewithal to pay school fees (saved by Universal Health Coverage and removal of household need to pay OOP expenses) ensures that the next generation will be educated, instead of having to drop out of school because families are spending scarce resources on what are often futile medications and treatments. Family subsidies and community palliative care provision that enables family caregivers to return to work, help households avoid the “health poverty” trap.

Leaving no-one behind by ensuring appropriate access to palliative care is an upstream public investment in workforce training that strengthens public health systems with appropriately credentialed doctors, nurses, pharmacists, social workers, bereavement counsellors and chaplains. These professionals can attend to the clinical, psycho-social and spiritual needs of the millions of children, their parents, and older persons who will need palliative care. Although services will be provided mostly in the home, and in the community by primary care workers, they can also be available in outpatient clinics, hospitals, hospice units, nursing homes, and prisons as necessary.

By integrating palliative care into their newly strengthened healthcare systems, all countries will come closer to achieving at least eight of the 2030 Agenda for Sustainable Development Goals..

These interlinked goals and targets include

  1. No poverty (Goal One)
  2. Zero hunger (Goal Two)
  3. Good Health — Universal health coverage including the provision of essential services and medicines and tackling non-communicable diseases (Goal 3)
  4. Quality Education (Goal Four)
  5. Gender equality and empowerment (Goal 5)
  6. Decent work and economic growth (Goal 8)
  7. Reduced inequalities (Goal 10)
  8. Responsible consumption and production — of medicines (Goal 12)

[1] The Economist. The new old. A blessing not a burden: the joys of living to 100. The Economist. July 6, 2017; Beaglehole, R, Bonita, R, Horton, R et al. Priority actions for the non-communicable disease crisis. Lancet. 2011; 377: 1438–1447

[2] Department of Economic and Social Affairs Population Division. World population ageing 2015. United Nations, New York, NY; 2015

[3] Institute for Health Metrics and Evaluation (IHME). GBD Compare Data Visualization. IHME, University of Washington, Seattle, WA; 2016

[4] EIU Quality of Death Index 2015 http://www.eiuperspectives.economist.com/healthcare/2015-quality-death-index

[5] Kundu, Tapas, E. Reitschuler-Cross, and Linda Emanuel. “Alleviating poverty: A proposal to mitigate the economic cost of disease.” John & Gwen Smart Symposium, Chicago, IL.; Emanuel, Natalia, et al. “Economic impact of terminal illness and the willingness to change it.” Journal of palliative medicine 13.8 (2010): 941-944. See also “Two hours by wooden boat, ten miles of hair-pin bends. What it takes to get to one of Malawi’s most remote hospitals.” http://www.heraldscotland.com/news/15778000.Two_hours_by_wooden_boat__ten_miles_of_hair_pin_bends__What_it_takes_to_get_to_one_of_Malawi__39_s_most_remote_hospitals_/

[6] Alcaraz, Carlo, et al. “The effect of publicly provided health insurance on education outcomes in Mexico.” The World Bank Economic Review 30.Supplement_1 (2017): S145-S156; Ratcliff, C., Thyle, A., Duomai, S., & Manak, M. (2017). Poverty reduction in India through palliative care: A pilot project. Indian journal of palliative care23(1), 41 https://www.ncbi.nlm.nih.gov/pubmed/28216861; see also “In Malawi, when you get cancer that is it, you are finished’ Nurse tells of struggle as Scots charity donates to rural hospital” https://www.dailyrecord.co.uk/news/uk-world-news/in-malawi-you-cancer-it-11718062; Citation: Onah MN, Govender V (2014) Out-of-Pocket Payments, Health Care Access and Utilisation in South-Eastern Nigeria: A Gender Perspective. PLoS ONE 9(4): e93887. https://doi.org/10.1371/journal.pone.0093887; Whitehead, M., Dahlgren, G., & Evans, T. (2001). Equity and health sector reforms: can low-income countries escape the medical poverty trap?. The Lancet, 358(9284), 833-836.

[7]  LTC protection for older persons: A review of coverage deficits in 46 countries . http://www.ilo.org/global/about-the-ilo/newsroom/news/WCMS_406984/lang–en/index.htm

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