The IAHPC, in collaboration with the Fundación FEMEBA (Federación Médica de Buenos Aires, Argentina) recently announced a collaborative project to develop a Global Palliative Care Database (GPCD) from palliative care (PC) services from around the world.
The objectives of this project are to:
The database shows the similarities and differences among reasons for referral and time of referral to PC services, as well as prescribed therapeutic interventions and referrals to other disciplines. The system registers items adapted from “An essential package of palliative care and pain relief health services” in The Lancet Commission on Global Access to Palliative Care and Pain Relief Report (2018).
Following confidentiality guidelines, no sensitive data is requested or recorded.
How is the GPCD useful to users?
The GPCD allows users to register, analyze, and have access to information (general, demographic, and epidemiological / clinical) about the initial consultations of patients accessing PC services. If the user gives authorization to share its data, the system offers two options: one to see their own data and another to see collated data.
The GPCD generates instantaneous reports on screen and offers the option to download the data in Excel spreadsheets containing all the anonymized information supplied by the services. The video below provides a glimpse on how the database provides collated information:
Individuals working in PC provision from around the globe are welcome to participate. Those interested in participating in this project must meet the following criteria:
Participants who have met all the criteria will be provided with the following
Individuals who participate in the project will be provided with a free six-month extension of their membership as a gesture of gratitude for their contribution and effort to advance global PC.
To enroll in the project and access the database, you will need your IAHPC membership number and the email affiliated to your membership.
If you need your membership number or additional information on how to renew, please contact Genevieve Napier, IAHPC Programs Officer.
Saturday, October 10, is World Hospice and Palliative Care Day, an awareness campaign coordinated by the Worldwide Hospice Palliative Care Alliance (WHPCA) with the support of the global palliative care community. This year’s theme is “Palliative Care: ‘My Care, My Comfort.’” People from around the world who have been impacted by serious health-related suffering — either personally or by supporting a loved one — will be making their voices heard. This year’s theme aims to communicate that the public can demand palliative care, and that — together — every person and their family affected by serious health-related suffering can influence their policy makers to prioritize palliative care financing as an essential component of Universal Health Coverage. In the video below, learn why this is important to IAHPC Board Members Gulnara Kunirova (Kazakhstan) and Harmala Gupta (India).
On World Day, IAHPC will participate in the “Inaugural U.S. World Hospice & Palliative Care Day Celebration: A Virtual Coming Together.” The event, which is free to all, runs from 9 a.m. to 5 p.m. EST and is hosted by Memorial Sloan Kettering Cancer Center.
It is scheduled to coincide with World Hospice and Palliative Care Day, a unified day of action to celebrate and support hospice and palliative care around the world organized by the Worldwide Hospice Palliative Care Alliance in collaboration with partners around the world.
The inaugural U.S. celebration has two objectives: wisdom sharing and community building for all invested in hospice and palliative care. As a Zoom event, all can come and go as they please. (No CME/CEU will be provided.)
The opening speaker, Dr. Felicia Knaul, will share her experience as lead author of, and findings from, the Lancet Commission on global access to palliative care and pain relief. IAHPC Advocacy Officer Katherine Pettus will close the day by reporting on how IAHPC advocates for palliative care and access to essential palliative care medicines worldwide, involving our membership in national, regional, and international meetings.
Leaders in their fields will discuss COVID-19, social justice and palliative care equity, spiritual care, palliative nursing, and psychosocial and ethical considerations in the pandemic era. A patient and family caregiver will share their story about living well in the face of advancing cancer, and the “gift” of hospice.
The event will not be recorded. To register, click here.
Editor’s note: Submit photos of your events on World Hospice and Palliative Care Day to be considered for publication in the November Newsletter. Send them to: email@example.com
Starting in April, the term “ethical principles” began soaring among users of Pallipedia, IAHPC’s online palliative care resource. It attained the top three in May, reached first place in August, and shot up even further with hundreds more pageviews in September.
Since February, just before the pandemic was officially declared, that one term has sparked 5,400 pageviews; overall Pallipedia received between 9,600 and 20,500 pageviews each month. Other highly prominent terms in that time period have been: professional competence, vulnerable groups, paramedical staff, health care system, overflow diarrhea/spurious diarrhea, and basic needs.
Ethical principles, detailed
Given the interest in ethical care, this is a good time to remind readers of World Health Assembly Resolution 67/19, which stipulates that “palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured.”
The WHA resolution also directs the WHO to “develop and strengthen, where appropriate, evidence-based guidelines on the integration of palliative care into national health systems, across disease groups and levels of care, that adequately address ethical issues related to the provision of comprehensive palliative care, such as equitable access, person-centred and respectful care, and community involvement...”
The 2020 WHO Guidance on Clinical Management of COVID-19 has an excellent section on "Ethical principles for optimum care during the COVID-19 pandemic."
Finally, a Joint Statement issued by the International Narcotics Control Board, the World Health Organization, and the UN Office of Drugs and Crime on August 14, 2020, states that, “As the pandemic increasingly affects countries with under-resourced health infrastructure and services, it is an ethical imperative to ensure that all people in all countries of the world are able to access essential medicines. This includes those medicines that are under international control.”
October is our Members’ Recognition Month, when we highlight the vital function that members play in the advancement of our mission, and formally acknowledge their support by awarding a prize in two categories.
1. Recognizing Loyalty
2. Increasing Membership
The time to join or renew your membership is now! Winners will be featured in an upcoming issue of this newsletter.
The Global CALM (Managing Cancer and Living Meaningfully) Program is an initiative to train a wide range of clinicians in helping people with advanced and metastatic cancer, and their close loved ones, to “manage the practical and profound problems association with advanced disease.”
Described as a “novel psychotherapeutic approach,” the program consists of three to six sessions over three to six months that cover four domains.
The overall aim of the program is to scale up global capacity for CALM through one- or two-day training workshops, available online, that are designed for health care providers working in oncology or palliative care.
Program organizers would appreciate the input of palliative care and/or oncology health care providers via a short 10-question, multiple choice survey found here.
On October 9, the International Children’s Palliative Care Network is reprising its annual campaign for pediatric palliative care. This year, due to the pandemic, it is being called “Hats and Masks On for CPC” campaign (#HatsOn4CPC). It is a fundraiser but, even more so, a day for raising international awareness of the need for children’s palliative care and the work of children’s palliative care services worldwide.
Want to pitch in? Download materials to market your campaign event here.
Learn more about the International Children’s Palliative Care Network in our Global Directory of Palliative Care Institutions and Organizations.
Curso Avanzado en Cuidados, Acompañamiento y Atención al final de la vida. 6a ED. Online course. October 1, 2020 to January 31, 2021.
PC2 - Advanced Practice Spiritual Care in Palliative Care. Online course. September 9 to October 21, 2020.
UK – St. Christopher's
Palliative and End of Life Care Foundations. Virtual learning. October 1 to December 31, 2020.
St. Christopher’s Multi-Professional Academy. Virtual learning. October 19-23, 2020
Introduction to End of Life Care for Registered Nurses, Nursing Associates and Allied Health Professionals. Virtual Learning. October 20-22, 2020.
Introduction to End of Life Care Course for Health and Social Care Assistants. Virtual learning. October 12-13, 2020.
X Congreso Latinoamericano de Cuidados Paliativos. Costa Rica. Original date: March 2021. New date: March 23-26, 2022.
Find a workshop, seminar, congress, or conference to interest you in the IAHPC Calendar of Events, updated monthly, that lists activities of special interest to those who work in palliative care. Or submit an event for consideration; it’s free!