Welcome to our last issue of the 2019 Newsletter.
As the year ends, we look back with pride on all that we achieved through our programs and projects, and of the support we were able to give to providers, policy makers, and stakeholders in the accomplishment of our mission. In this issue, we take the opportunity to recall highlights and examples of activities, initiatives, statements, and resources that we implemented in 2019 to relieve serious health-related suffering and improve the quality of life of patients and families around the world.
New mission and vision statements. We revised our core statements to reflect our dual purpose: to inspire and inform, and to influence and empower.
Vision: Towards a world free from health-related suffering.
Mission: We serve as a global platform to inspire, inform, influence, and empower individuals, governments, and organizations to increase access to and optimize the practice of palliative care.
Our new vision for the IAHPC’s future is simple, clear, and focused on the relief of suffering. Although it uses only a few words, the refined vision builds on our tradition of dedication to improving the quality of life of patients and caregivers worldwide. IAHPC subscribes to the values of commitment, excellence, efficiency, creativity, compassion, respect, and service to others. These values underline our principles of aspiring to be a strong network that is person-centered and empowering, building communities of practice and supporting behavior change to drive demand for palliative care so that it becomes available to all those who need it.
Global consensus-based definition of palliative care. The objective of this project 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 using the current World Health Organization (WHO) definition as our starting point. The resulting definition consists of two sections and follows a similar structure to that of the current WHO definition: an introductory statement and a 12-point list of the definition’s components. As suggested by participants, the definition includes six recommendations to governments on how to achieve palliative care integration.
This was an unprecedented collective effort by the global palliative care community and the first time that such a large-scale effort was 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 palliative care 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.
Recognizing that this definition is not perfect, 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.
The concise definition is:
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families, and their caregivers.
The full definition is here.
At this time, 1,000 individuals and almost 200 organizations have endorsed the definition. We welcome additional endorsements.
Joint position statement on the decision by WHO to withdraw guidance documents. On May 22, 2019, Congresswoman Katherine Clark and Congressman Hal Rogers, two members of the U.S. House of Representatives, published a report (“Corrupting Influence: Purdue and the WHO”) claiming (falsely) that the development of two WHO guidance documents (Ensuring Balance in National Policies on Controlled Substances and Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses) was influenced by the interests of Purdue Pharma. This influence was, according to the report, achieved through organizations and individuals serving the interests of the company (Purdue Pharma is the maker of OxyContin, a commercial brand of oxycodone). The report argued that by developing, distributing, and promoting these guidelines, the WHO was helping the pharmaceutical company increase its market share and putting other countries at risk of replicating the U.S. “opioid crisis.” The report contains serious factual inaccuracies and draws inaccurate and unfair conclusions. It includes misleading information, and by making false accusations of existing collaborations and alliances to advance pain relief and palliative care, concludes that there was corruption within WHO. No staff member of the offices of the U.S. representatives contacted any of the organizations or individuals mentioned in the document to seek responses to the allegations made in the report.
On June 19, WHO Director-General Dr. Tedros Adhanom Ghebreyesus sent a letter to the report’s authors informing them that the WHO had taken their concerns very seriously and that the agency had decided to withdraw the two guidelines, published in 2011 and 2012 (as published on its website). WHO’s decision took the academic and civil society experts, and organizations involved in the development of these guidance documents, by surprise. Both documents were developed in order to improve the situation of millions of patients worldwide who suffer from lack of, or inadequate access to, medications, including pain medications. The guidelines were not commercially initiated, funded, or influenced. Our primary focus has been, continues to be, and will always be patients and their families. Those working in the field have seen and experienced how unrelenting, excruciating pain affects individuals and families and the magnitude of the suffering it engenders.
We responded by developing a joint Position Statement that has been endorsed by more than 100 organizations and institutions working in palliative care and pain relief. You can read it here.
Database: Lancet Commission on Global Access to Palliative Care and Pain Relief report. To mark World Hospice and Palliative Care Day this October, the IAHPC together with the University of Miami Institute for Advanced Study of the Americas (UMIA) and the Mexican Health Foundation (FUNSALUD) launched a platform to facilitate access to the data produced by the Lancet Commission on Global Access to Palliative Care and Pain Relief for advocates, academics, public health experts, and policy makers. The platform, created by researchers at UMIA and FUNSALUD, enables users to calculate serious health-related suffering (SHS) and the need for palliative care by income and geographic region for a vast number of countries. The platform is housed in the IAHPC website, as a service to the global palliative care community.
The data comes from the Lancet Commission Report, "Alleviating the access abyss in palliative care and pain relief — an imperative of universal health coverage,"1 and an extensive, related data appendix2. The data from the report:
2020-2024 Strategic Plan. This year, we developed a bold and clear plan that outlines where we have come from, where are going, how we will get there, and what it means to all of us. The overarching goal of a world free of health-related suffering and the four areas of work and expected outputs will keep us focused on our future direction, as well as our day-to-day work.
Our strategic plan is the culmination of a process we began in the summer of 2018. Under the expert lead of Dr. Faith Mwangi-Powell, and based on careful assessment of current programs and projects as well as current and future resources, several board and staff members met in Berlin in May 2019 for thought-provoking work sessions. The strategic plan was finalized in June 2019, with a new mission and vision for our work in global palliative care.
We have better data than when we adopted our previous strategic plan, data that shows the still yawning access abyss in palliative care that leaves millions of patients to live and die with preventable suffering. These fundamental divides will not be resolved without focused attention and resources. In developing our 2020-2024 Strategic Plan, we re-examined our priorities against the current global health policy landscape and considered where the organization could have a more meaningful role.
Throughout a robust engagement and planning process, we heard from our members, directors, officers, volunteers, researchers, donors, and representatives from partner organizations. In building this blueprint for the future, we remained true to what we heard, and we hope that you see your voice reflected here. We are also committed to receiving your ongoing input and feedback as we journey through this plan and its priorities together.
This plan serves as an important guide to help the IAHPC succeed in the face of challenges. It is an opportunity to strengthen our institutional capacity and support innovation. As we roll out this five-year plan, we know that our work will not move in a linear trajectory. We will learn from our experiences and partners, and adjust as we monitor and evaluate results. We know that our strategic planning decisions affect many, and we commit to transparent communications as our funding priorities evolve. The 2020-2024 Strategic Plan can be found here.
We could not have been able to achieve this and much more without the generous support of our board of directors, our members, donors, foundations, and organizations. We are especially grateful to the Open Society Foundations, Pettus Foundation, and the U.S. Cancer Pain Relief Committee for their support.
All our donors and supporters believe in IAHPC’s mission and in our goal to have an impact on the promotion and development of palliative care. Our ability to continue to help others depends heavily on the support we receive from all, so please consider donating to IAHPC.
We face many challenges, especially regarding our long-term sustainability. Aware of the financial constraints, we have prepared to meet these challenges. Our strong commitment to supporting the development of palliative care around the world will continue to be our driving force. We wish to thank all those who make our work worthwhile — patients and their families, health care workers, members, donors, and the dedicated volunteers who give so much to palliative care.
We are also extremely grateful to both our small staff, who work tirelessly to ensure that IAHPC achieves its mission and delivers its promises, and to our Board of Directors for their guidance and wisdom in helping us achieve results.
Best wishes to all of you, your friends, and family members for the coming holidays.
We hope that next year will bring happiness and success to all!
Lukas Radbruch, MD
Chair, Board of Directors
Liliana De Lima, MHA
1. Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: The Lancet Commission report. Lancet 2018; 391(10128): 1391-454.
2. Knaul FM, Farmer PE, Krakauer EL, et al. Lancet Commission on Global Access to Palliative Care and Pain Relief background document: Technical Note and Data Appendix for Report. 2017. Miami: University of Miami Institute for Advanced Study of the Americas.