2020; Volume 21, No 10, October
Global Palliative Care Database
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:
- Provide demographic and epidemiological information of patients at the time when PC was initiated (either by a PC specialist, another specialist or a generalist)
- Identify the prevalent symptoms at the time of the initial PC consultation
- Identify the therapeutic interventions recommended for the treatment and management of the symptoms identified in the consultation
- Analyze the similarities and differences among and prepare a report for publication.
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:
- be an IAHPC member (join the IAHPC),
- be a current provider of PC – as a PC specialist, another specialist or a generalist
- be 18 years or older
- has access to patients’ records
- has obtained permission from the institution to participate in this study
- has obtained patients’ approval to share their data for this study
Participants who have met all the criteria will be provided with the following
- an individual access code to the system
- instructions on the use of the database
- description of the questionnaire
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.
A “Virtual Coming Together” on
World Hospice & Palliative Care Day
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.
Wisdom-sharing &
community building
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 protected]
Most-Searched Pallipedia Term: Ethical principles
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."
- Equal moral respect: Every person is equally valuable. Treatment and care decisions should be based on medical need and not on irrelevant or discriminatory features such as ethnicity, religion, sex, age, disability or political affiliation. Patients with similar health problems or symptoms must receive equal treatment and care. Showing moral respect means involving patients and their caregivers in decision-making to the greatest extent possible, explaining options and limitations in treatment.
- Duty of care: Every patient is owed the best possible care and treatment available in the circumstances. Even when resources need to be rationed during a crisis, health care professionals and frontline workers have a duty of care to promote their patients’ welfare within available resources. Health care professionals and frontline workers are also owed a duty of care. In this regard, appropriate PPE for health care professionals and frontline workers should be provided to promote their safety and well-being. This is a benefit to them but also to the whole of society by ensuring that they are available to support the clinical response for as long as possible.
- Non-abandonment: It follows from consideration of equal moral respect and duty of care, that no person in need of medical care should ever be neglected or abandoned. Care will extend to families and friends of patients and options to maintain communication with them should be explored. Palliative care must be accessible for all patients with respiratory failure for whom ventilatory support will be withheld or withdrawn.
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.”
Reminder: October is Members' Month! Sign Up by Oct. 31 to Qualify for Members’ Recognition Prizes
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
- Goal: To reward current members for their loyalty to the IAHPC.
- Eligibility: Current IAHPC members who have kept their membership in good standing for at least 3 consecutive years by October 31, 2020 are automatically included.
- Prize: One IAHPC Scholarship plus a one-year membership. The winner is randomly selected among eligible members.
2. Increasing Membership
- Goal: to increase the number of members by rewarding a current member who refers the highest number of new or renewed members.
- Eligibility: Current IAHPC members, including both individuals and institutions, in all countries of the world.
- Prize: One IAHPC Scholarship plus a one-year membership for the current member who has referred the highest number of new or renewed members within 12 months as of October 31, 2020.
The time to join or renew your membership is now! Winners will be featured in an upcoming issue of this newsletter.
In other news
Global Managing Cancer and Living Meaningfully Program
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.
- Disease management and relationship with health care providers
- Changes in self and relationships with close others
- Sense of meaning and purpose
- Mortality and future-oriented concerns
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.
This Year, It’s Masks On Too!
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.
What’s New in the Calendar
Spain
Curso Avanzado en Cuidados, Acompañamiento y Atención al final de la vida. 6a ED. Online course. October 1, 2020 to January 31, 2021.
USA
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.
Postponed
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!
Do you have any questions regarding the IAHPC Calendar of Events?
Each month, we publish items that may be of interest to our global readership. Contributions are welcomed.
- Content should describe opportunities to advance palliative care and improve knowledge, skills, and networking, e.g., education and training, travel grants, access to online resources, etc.
- 150 words maximum.
- Copy deadline: 20th of each month.
- Please submit your copy to the editor together with any JPEG images. We reserve the right to edit content.
Please also consider promoting your education and training events in the IAHPC Global Directory of Education in Palliative Care. It’s quick and easy — just submit your content online.
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