This section comprises an introduction to the new Palliative Care Definition, an invitation to endorse it, a call for volunteer translators, and links to the full text and endorsements.
On 17 December 2018, the IAHPC presented a global, consensus-based definition of palliative care resulting from a yearlong, three-phase process involving hundreds of experts and everyday practitioners representing 88 countries.
Former IAHPC Chair and member of the working group, Dr. Roberto Wenk, said, ‘Definitions enable us to have a common understanding, and this new consensus-based definition will allow to assess, monitor, and report on the global status of palliative care, have more meaningful conversations, and make better decisions.
One of the challenges of palliative care implementation has been a lack of consensus on what palliative care is, when it should be offered, to whom, and by whom. Furthermore, the terms ‘palliative care’ and ‘hospice care’ have been used interchangeably, but are interpreted differently. A 2002 definition by the World Health Organization (WHO) limits palliative care to a service that can be offered to relieve problems associated with life-threatening illnesses.
Following the recommendation of the Lancet Commission on palliative care and pain relief, and as an organization in official relations with the WHO, the IAHPC designed, developed, and implemented a project to revise and adopt a new palliative care definition. The objective was to find consensus on a definition that focuses on the relief of suffering, and is also timely and applicable to all patients regardless of diagnosis, prognosis, geographic location, point of care, or income level.
IAHPC Advocacy Officer Dr. Katherine Pettus said, ‘This definition represents the voice of hundreds of workers and caregivers as expressed through IAHPC members working in many countries. It is democratic. We look forward to supporting nongovernmental and professional organizations, federations, health care alliances, and civic-minded individuals to use this definition in their advocacy efforts to advance palliative care policy and implementation at all levels, from the local to global.’
Dr. Tania Pastrana, IAHPC research adviser and President of the Latin American Association for Palliative Care (ALCP), commented that ‘this new definition will facilitate cross-country studies, as well as align efforts to develop regional strategies for alleviating serious health-related suffering.’
Representatives of some organizations and academic institutions have endorsed the new consensus-based definition. The IAHPC invites other interested organizations, institutions, and individuals to endorse it. Endorsements will be collected until 28 February 2019, when the complete list of those endorsing the definition will be submitted to the WHO.
In January, IAHPC will submit a paper with the description of the methodology to a peer-reviewed journal.
The IAHPC has uploaded the definition of palliative care in languages other than English: Arabic, Chinese, German, and Spanish. A French and a Portuguese translation are under way.
Dr. Tania Pastrana, IAHPC research adviser and President of the Latin American Association for Palliative Care (ALCP), said that the ALCP, along with Dr. Roberto Wenk and colleagues in Spain, helped to develop the Spanish translation. She also stated that the ALCP will be using the Spanish and upcoming Portuguese translations throughout Latin America.
‘We invite other regional palliative care associations to do the same,’ she added. ‘It will be an excellent advocacy tool.’ If you are interested in contributing to this project with a translation of your own, please email IAHPC Executive Director Liliana De Lima.