Dear Friends of IAHPC,
In December we announced the launch of a global, consensus-based definition of palliative care. The objective was to find consensus on a definition that focuses on the relief of suffering, and one that is also timely and applicable to all patients regardless of diagnosis, prognosis, geographic location, point of care, or income level.
For this project, the IAHPC implemented a yearlong, three-phase process throughout 2018 using the current World Health Organization (WHO) definition as our starting point. The initial phase included a multidisciplinary working group of 38 individuals in 22 countries with expertise in advocacy, health care administration, geriatrics, oncology, palliative care, pediatrics, pharmacy, primary care, and research. In a second phase, IAHPC surveyed more than 400 IAHPC members — including palliative care workers, volunteers, and caregivers — working in 88 countries. Using results from the first two phases, a third and final phase focused on drafting and approving the final text of the definition by the core group. As we prepare this piece, we are finalizing the draft of a paper describing the methodology and results to submit to a scientific journal.
The resulting definition consists of two sections and follows a similar structure to that of the current WHO definition. The new definition comprises a concise introductory statement and two sections: a 12-point bullet list of components of the definition and an addition suggested by participants, six recommendations to governments on how to achieve palliative care integration.
This is an unprecedented collective effort by the global palliative care community and the first time that such a large-scale effort has been undertaken to reach a definition of palliative care. Developing this consensus-based definition required lots of deliberation, including finding common ground among individuals who have been working in the field in different settings for many years.
Although the definition from this consensus-based process is not perfect, it is generative, and creates value beyond its intended purpose of describing palliative care effectively. The multiplicity of imprecise definitions — and different practices we have now — makes it difficult to find common ground, and are a challenge for multi-country studies, advocacy campaigns, and funding requests. The new definition is inclusive, and emphasizes vulnerable populations, children, and older persons. It encompasses health-system advances and reflects the shared perceptions of a global community of professionals and caregivers.
We recognize that this definition is not perfect, and we welcome open dissent and debate. We have had many positive responses and a few negative ones, which was expected. Finding a middle ground between opposing opinions (i.e., palliative care is mainly about caring for those facing end-of-life vs. palliative care is the relief of all suffering; or, the palliative care ethos is anchored in the community vs. palliative care is nurtured from the specialist field). Some of these differences were irreconcilable and thus even a few of the members of the core group are not completely happy with the resulting definition.
If anything, our project has served as the trigger to start a discussion among organizations that have never challenged or questioned the WHO definition, or even their own definitions. This presents an opportunity for further discussion, and we consider that we have done a service to the global palliative care community by gathering their opinions and including their voices.
The IAHPC is very grateful to the individuals who participated in this study. We are inviting individuals and organizations that agree with the definition to endorse it. We currently have 1231 individuals and 192 organizations sign in support of it. We hope that this will finally make the WHO reflect about the need and importance of revising its definitions of palliative care for children and for adults written nearly 20 years ago that are no longer applicable, posing many challenges.
We invite members of the palliative care community to volunteer to translate the definition into their native languages. If you are interested, please contact Liliana.
Some think that the new definition of palliative care will become the official definition of palliative care for the WHO. This is not accurate - the WHO has its definition of palliative care. We proposed to revise the WHO definition as part of the program of work of the IAHPC as an NGO in formal relations with the organization, which the WHO agreed to. This does not mean that the WHO will uptake the resulting definition (in fact, the WHO does not respond to these requests from civil society but rather to requests from member states). However if our global consensus process results in some member state or the Secretariat deciding to revise the old WHO definitions (for children and adults) and follow the process in compliance with their procedural requirements to do so, then it would be the best outcome of this project.
As we write this message, when the year is coming to an end and a new year is approaching, we take time to reflect upon the many blessings we enjoy: our members, colleagues, directors, donors, and friends, as well as the countless patients and families around the globe who we have had the privilege to serve. It is in this spirit that we say thank you for your support, which enables us to advance our mission.
We appreciate the confidence that all of our donors, members, and readers have placed in us and in our work. We will strive to be better each day and look forward to working with you in 2019. We hope that this New Year brings happiness, peace, and health to you and your loved ones.
Until next month,
Lukas Radbruch, MD
Chair, Board of Directors
Liliana De Lima, MHA
Executive Director
This newsletter, including (but not limited to) all written material, images, photos are protected under international copyright laws and are property of the IAHPC. You may share the IAHPC newsletter preserving the original design, the IAHPC logo, and the link to the IAHPC website, but you are not allowed to reproduce, modify, or republish any material without prior written permission from the IAHPC.