By Dr. Katherine I. Pettus, PhD
IAHPC Senior Advocacy Director
“Palliative care is my religion, my politics, and my love!” So declared Silvia Labrada, Director of Todos Contigo [translation: All With You, or We’ve Got Your Back!], when I had the great privilege of visiting with her and the colleagues at the New Health Foundation (NHF) in Seville, Spain. In April, Silvia presented on the compassionate community program Sevilla Contigo at the second civil society dialogue on palliative care with Dr. Tedros Ghebreyesus, Director General of the World Health Organization (WHO).
Todos Contigo and the NHF are affiliates of the Compassionate Communities movement, which frames the processes of ageing, serious illness, and dying as social and community concerns—not exclusively medical events. New Health, now in 15 countries, works to ensure that “each person with advanced disease, high dependency, and at the end of life receives comprehensive, compassionate, and high-quality care.”
New Health staff take a rigorous, outcome-based approach, working with insurance companies and public entities (such as national ministries of health) to identify and cost the services available in a specific community or territory to treat people with palliative care needs. Their actuaries then compare current “medicalized” expenditures for treatment of advanced illness and end-of-life care with the cost of high-quality palliative care services provided to patients by interdisciplinary palliative care teams in that community.
New Health Foundation uses the NEWPALEX method, a management system designed to achieve excellence in palliative care programs and resources involving the organization, care professionals, and the community.
The method, based on 200 parameters, is a comprehensive system for continuous improvement through certification of health care and all cross-cutting areas of an organization, including: contracting, communication, human resources, marketing, social awareness, volunteering, and achieving excellence. It is available for all levels of care—home, outpatient, and hospital—for both adults and children. NEWPALEX sponsors webinar and training sessions for professionals and volunteers, raising social and community consciousness through Compassionate Universities, Compassionate Schools, and Compassionate Corporations. It consistently demonstrates cost savings to insurers and public entities of up to 47%, and touts patient/caregiver satisfaction scores in the 90th percentile. A win-win scenario if there ever was one.
Regional advocacy in September focused on preparation for, and participation in, the 71st session of the Regional Committee for Europe. The committee, like its other regional counterparts, is WHO's decision-making body for the region. These committees comprise representatives of the regions’ member states and meet annually for four days in September or October. At these annual sessions, member states formulate regional policies, supervise WHO regional activities, comment on the regional component of WHO's proposed program budget, and nominate a regional director. As a non-state actor in official relations with WHO, IAHPC is usually invited to register a delegation from the countries in each region; we have submitted statements and attended in person since 2014.
Our delegation for this year’s Europe committee meeting comprised myself, Dr. Simone Cernesi (Italy), Drs. Lukas Radbruch and Tania Pastrana (Germany), Dr. Galina Khemlina (Russian Federation), Dr. Juan Pablo Leiva (President of SECPAL, Spain), and IAPHC Board Member Ms. Gulnara Kunirova (Kazakhstan). After I analyzed the RC71 documents, none of which contained any reference to palliative care, delegation members did the essential work of reaching out to contacts in their ministries of health to ask that their national statements on major agenda items include references to palliative care as an essential service for pandemic response, preparedness plans, and primary health care services.
Although we were shocked at the deafening silence around palliative care in the committee documents, as our written statement said, we were gratified that our statement was endorsed by the Worldwide Hospice Palliative Care Alliance, the European Palliative Care Association, WONCA Europe (World Family Doctors, Caring for People), the International Federation on Ageing, and the European Forum for Primary Care (EFPC). We also endorsed the EFPC statement, as it included palliative care.
Ms. Kunirova prerecorded a video of our statement, making it available to all registered delegations before, during, and after the meeting. Despite the preparatory work done by our delegation with their ministries, we were once again disappointed that NOT ONE member state mentioned the need to develop palliative care services in their country to improve pandemic response and preparedness, or to integrate PC into primary health care. The WHO Secretariat referred to it only once, as part of the spectrum of essential services. Clearly there is still much work to be done at the national level to yank palliative care out of the closet. As an article published in September on palliative care integration in the European region notes, “across all indicators, 39 countries (76%) score from low to very low integration capacity.”
We did get a bit of airtime at the end of one side event, when I asked a question in the zoom chat about ensuring access to controlled essential medicines for palliative care. Momir Radulović, Executive Director of the Slovenian Medicines Agency, responded that “palliative care is one of the areas we need to improve,” and suggested joint procurement as a solution. WHO Regional Director for Europe, Dr. Hans Kluge, affirmed that access is a “key pillar” and that there is still much work to do. Regarding service integration, education, access to controlled medicines, and agency respect for palliative care as an essential service, that is an understatement.
One tool to help us advance toward our vision of a world free from health-related suffering is the recently released Palliative Care Advocacy Overview, a 40-minute video presentation introducing an upcoming eight-module course for IAHPC members who wish to learn more about palliative care advocacy. Modules for members will be released the second week of every month from October 2021 through May 2022 so that students can view and participate on their own time. The modules are accessible free of charge for IAHPC members; the overview is freely available to all.
Palliative care integration is experiencing an evolutionary phase that now calls for local, national, and regional advocacy. We have accomplished a tremendous amount at the global level, thanks to the support of our members, the Open Society Foundation, American Cancer Pain Foundation, and other donors. Those accomplishments must now be anchored in “ground-level” advocacy for service delivery and access to medicines. IAHPC is ready to support our members in that enterprise, and to learn from you about the needs of your program, workforce, and pharmaceutical supply chain.
The Global Commission on Drug Policy invited IAHPC to participate in a side event at the UN General Assembly in September. At the panel discussion, “Access to Essential Controlled Medicines: Five years after UNGASS 2016,” IAHPC was represented by our board member and Chair of the Lancet Commission on Palliative Care and Pain Relief, Dr. Felicia Knaul. The side event, which also featured the Right Hon. Helen Clarke for the Global Commission, WHO Director General Dr. Tedros Ghebreyesus, and ambassadors for Switzerland and Sierra Leone, can be viewed here.
Finally, I must apologize to my colleagues and friends who organized the plenary panel I was supposed to address (virtually) at the Oceanic Palliative Care Conference. Despite having my remarks prepared, and having checked the schedule several times, I somehow missed the fact that the panel would be taking place at 2 a.m. European time, and I was fast asleep when organizers were frantically trying contact me for the sound check. My calendar and brain had muddled the time zones when I moved to Spain from San Diego in September. My deepest apologies to Rachel Coghlan and Odette Spruijt, our Australian Advocacy Focal Points! I was delighted to hear that it was a great panel discussion.
To learn more about New Health Foundation, Worldwide Hospice Palliative Care Alliance, European Palliative Care Association, or Open Society Foundation, visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.