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

 

 

 

Advertisements

Nursing Homes Provide Palliative Care for Older Persons in Bogotá

Although the dominant culture in Colombia traditionally values familial care for dependent elders, that culture is being eroded by the modern imperative of small families where both parents work and also care for small children. Care is becoming increasingly professionalised, subsidized through an agglomeration of public and private entities, from insurance companies to faith based organisations.

I was privileged to visit a couple of these nursing homes when I was in Bogotá for a palliative care advocacy workshop hosted by the International Association for Hospice and Palliative Care and the two Colombian national palliative care organisations, ASOCUPAC and ACCP,  Asociación Cuidados Paliativos de Colombia.

Dra Maria Lucia Samudio, a palliative care physician who specialises in geriatrics, was my expert guide around the two nursing homes.

Both Dra. Maria Lucia, and Dra Mercedes Franco, a psychologist located in Cáli, who founded a palliative care foundation that works with the most marginalised populations, are involved with the Colombia Compassionate Communities, Todos Contigo. Declaración de Medellín.

Contigo

Representatives of these Compassionate Communities can participate in the Agenda 2030 High Level Political Forum in 2018, which will consider Goal #11, among others, concerning sustainable cities. Since the “Todos Contigo” project includes the provision of community based palliative care, which will be a novelty for the High Level Political Forum, it will be great to hear the Colombian colleagues present at the UN next year.

At the two nursing homes we visited — one of which was state subsidised, the other run by a lay Catholic organisation and funded by donations, the staff were welcoming, the patients appeared to receive meticulous attention, and everything was clean. Both facilities, like most nursing homes, are struggling to make ends meet, sometimes staff don’t get paid on time, and there is strong competition for scarce resources. They still maintained an atmosphere of loving, patient centered care, though. Families were visibly welcome, providing care and attention to relatives and friends.

According to my companion, Colombia is considering a law similar to Costa Rica’s Ley de Cuidadoras, which pays caregivers a basic income. Of course, this is key to achieving several of the Agenda 2030 Goals, including #4 Quality Education, and #5, gender empowerment.

Since the chronic care facility is located in a beautiful historic part of Bogotá, none of its essential features can be remodeled.

IMG_8078.jpgWhile it can be a tedious and expensive proposition to maintain an old building, there are some benefits, such as the sunroom, where patients and families can come and enjoy some daylight and socialisation.

IMG_8083

The gorgeous old chapel is the only part of the interior that has not been remodelled. It contains C17 paintings of the Annunciation and St.Catherine of Sienna (patron saint of the sick), which hang under the original latilla and plaster ceiling.

IMG_8105.jpg

The second facility we visited was only for older adults with palliative care needs.  Of 26 patients, 23 had dementia diagnoses. When operating at full strength a few years ago, they had around double the number of older adults, and also had children, so it was a multi-generational care home.  The children and abuelos together painted the mural at the top of this posts, on the occasion of the first World Hospice and Palliative Care Day in 2005.

The bedrooms are beautifully kept, and as homelike as possible with keepsakes in every one for a family like atmosphere.

IMG_8096I met Señor L. in the dining room, after all the “abuelos” as the staff called them, had lunched. Not a dementia patient himself, he had lost his wife to cancer and dementia a few months previously.  Their family photo, hung with a rosary, is on the wall of his room, which used to be theirs.

The topic of palliative care for older persons will be on the agenda of the Open Ended Working Group on Ageing next year at the United Nations, and IAHPC welcomes all palliative care team providers to submit their stories, photos, and videos (with permission of the elders of course) for a special series of articles on Ehospice focusing on palliative care for older persons.  We are beginning to gather a body of evidence from all our partners in many countries regarding the state of palliative and long term care for older persons. We are planning a campaign to promote this very exciting and timely topic at the Open Ended Working Group in July 2018, including with side events, expert panels, and testimony of civil society providers of palliative care for older persons. We invite you to join us and submit your stories!

fullsizeoutput_b3a.jpeg

Sturm, Drang, and the Busted Drug War Consensus: The Decline of International Law

Sturm, Drang, and the Drug War. The Decline of International Law Katherine Pettus, PhD There is a great deal of Sturm and Drang afflicting the leading lights of the drug policy reform community at …

Source: Sturm, Drang, and the Busted Drug War Consensus: The Decline of International Law