Dear readers,
Next month is especially important for the global palliative care community. On the second Saturday of October, we all celebrate World Hospice Palliative Care Day, an international day of advocacy and awareness raising coordinated by the Worldwide Hospice Palliative Care Alliance (WHPCA). The focus of this year’s World Day, taking place on and around October 14, is “Compassionate Communities: Together for Palliative Care.” Compassionate communities care for people, assist people to live in the place they call home, connect people to services, and raise awareness about end-of-life issues.
We tend to rely on governments to adopt changes needed to improve palliative care provision, but governments are usually not good executors as they are heavily burdened by bureaucracy and other constraints. Governments are good at developing and adopting laws and policies, which are needed to ensure that there are legal frameworks in place to protect the most vulnerable. But only we can care for our friends and family members with the commitment and solidarity of those who are truly connected. Palliative care organizations have been advocating for the development of stronger communities, where patients are cared for by neighbors and friends in addition to family members. This effort has led to the creation of hundreds of compassionate communities around the world, such as Sevilla Contigo (Seville With You) in Spain.
Many organizations throughout the world are planning celebrations to increase awareness about compassionate communities among the public, governments, and patients, informing them that palliative care improves the quality of life of patients and families, and that appropriate policies and funding mechanisms need to be put in place to ensure access to palliative care to those in need. We hope that you get involved and plan an activity to celebrate with many others on World Day.
In 2017, the Lancet Commission designed an Essential Package of Palliative Care and Pain Relief Health Services. The Essential Package is a minimum set of medicines, equipment, and personnel that can be implemented at the primary care level for all patients and in the most resource-constrained settings to alleviate most serious health-related suffering (SHS). It focuses on off-patent medications, the most basic and least-cost equipment, and non-specialty human resources, including community clinics and health workers.
In addition to developing the Essential Package, the Lancet Commission recommended the development of an Expanded Package to provide coverage for complex needs not adequately relieved at the primary care level. This package should be available at specialist and tertiary level services (such as specialized palliative care services, oncology clinics, or HIV/AIDS services). The Expanded Package is intended for less resource-constrained clinical settings and middle-income countries.
Last year, the University of Edinburgh received a grant from the Medical Research Council in the UK to support the project, titled "Reducing the burden of serious health-related suffering: An evidence base to close national divides in access to palliative care and pain relief." To complete this project, the university contracted with the IAHPC to undertake Work Stream 1, which includes the development of the PCPR packages.
Using existing evidence-based data, expert clinical opinion, and previous experience achieving global consensus, the IAHPC will do the following.
The IAHPC has convened a steering group, including us both as well as Tania Pastrana, Julia Downing, and Veronica Dussel, who will coordinate and implement the steps needed to complete Work Stream 1. The steering group will be sending invitations to IAHPC members to participate in expert groups, so keep your eyes open for an invitation!
The 18-month project consists of four Work Streams and is projected to costs more than £1 million (over $1.2 million USD). This past month, IAHPC received the $175,000 USD required to complete Work Stream 1. The project is coordinated by the University of Edinburgh in collaboration with the IAHPC and four additional partners: The University of Miami (US), Fundación Tómatelo a Pecho/Funsalud (Mexico), PALIAMED (El Salvador), PROESA-ICESI (Colombia), and the Latin American Association for Palliative Care.
We are deeply grateful to the University of Edinburgh and, in particular, to the experts involved in securing the grant: Dr. Liz Grant from the University of Edinburgh, Dr. Felicia Knaul from the University of Miami, and Dr. Afsan Bhadelia from Purdue University.
Following the publication of its report, Left Behind in Pain, the World Health Organization is hosting three webinars on September 12 and 14 to share country experiences and to discuss the policy landscape for bringing about safe access to morphine for medical use globally. [See the News item for details; or go here.] This issue of the newsletter includes an interview with WHO Technical Officer of Health Products Policy and Standards Kiusiang Tay-Teo, PhD, who coordinated the research and publication of the report.
We are deeply grateful to the WHO for the organization’s efforts to bring light to this issue, and to Dr. Kiu for his work on this publication.
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.