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.
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.
 Mark 2:22
 Dylan Thomas ‘Do not go gently’ Collected Poems