The International Association of Hospice and Palliative Care organized two side events at key international meetings during the month of April. Side events are useful fora for educating UN delegations and civil society organizations about key issues facing the intergovernmental organizations.
Global PC needs
in the pandemic
At the United Nations’ 11th Session of the Open-Ended Working Group on Ageing in early April, IAHPC organized a panel on the topic of “Global Palliative Care Needs of Older Adults in the Pandemic.” (The full text of an IAHPC statement delivered at the session is in the Advocacy section.)
Older adults and their families have suffered terribly during the pandemic, particularly those isolated alone at home and those in congregate settings such as aged care homes, assisted living facilities, nursing homes, and prisons, where mortality and morbidity rates have been exponentially higher than in the wider community. The expert panel, whose members have all been on the front lines of palliative care work in the pandemic, addressed palliative care needs of older adults and what needs to be done to respect the human rights and dignity of older persons going forward.
The panel was moderated by IAHPC Advocacy Officer Dr. Katherine Pettus. The panellists were:
Procurement, pricing, access
to controlled medicines
Harm Reduction International, DeJusticia, and IAHPC have co-organized a session titled “Procurement, Pricing, and Access to Controlled Medicines During COVID-19” on April 12, on the margins of the 64th Session of the Commission on Narcotic Drugs.
The COVID-19 pandemic has revealed catastrophic weaknesses in global supply chains for pharmaceutical products and inefficient procurement and administration mechanisms for essential medications regulated under the three international drug control conventions. As the Joint Statement on Access to Medicines issued by the INCB, the WHO, and UNODC in August 2020 addressed this problem, the side event will take up the request of the President of the International Narcotics Control Board to use this challenging time “as an opportunity to strengthen our cooperation with a view to ensuring availability of controlled substances for medical and scientific purposes while preventing diversion.” Panellists will showcase leadership in ensuring balance in access to controlled medicines during the pandemic; specifically sharing lessons learned in treatment for pain and drug dependence. The panel is being moderated by His Excellency Ghislain D’Hoop, Ambassador of Belgium to the UN organizations. The panellists are:
Look for reports on these events by Advocacy Officer Dr. Katherine Pettus in the May issue of the IAHPC Newsletter.
“It’s such a beautiful video. Very poignant.” —Dr. Shiao (Caryn) Yen Khoo, Malaysia
“It was sensitive, real, and raised all the important issues that come with this situation.” — Jenny Hunt, Harare
“it was a great story of compassion and love—the backbone of what palliative care is about. Thank you for letting me watch this very touching film.” —Dr. Zipporah Ali, Kenya
A members-only screening and post-movie discussion of Caregiver: A Love Story drew 100 IAHPC members in 38 countries on March 26. It resulted in a recommendation to develop a research agenda on the topic, beginning with a baseline of available services and policies.
“The caregiving/caregiver issue is really important, and yet little considered by academia, and it certainly does not receive the appreciation it deserves,” said Dr. Claudia Burlá, an IAHPC board member from Brazil, after the screening. “The film is...filled with important messages.”
The 23-minute film tells the story of 60-year-old Bambi Fass, who decides on home hospice care after four years of unsuccessful cancer treatments. Her primary caregiver is her husband, Rick. The discussion was led by IAHPC Executive Director Liliana De Lima, the film’s producer and director Dr. Jessica Zitter, CanSupport founder Harmala Gupta, and IAHPC Advocacy Officer Dr. Katherine Pettus. Discussants presented best practices, such as the services CanSupport provides, and reviewed the few existing policies that support family caregivers in the face of their multiple challenges.
“Over the years, we learned that caregiving is difficult, and it is an expected part of the process and learned that almost nothing could be done for that,” said Dr. Galina Khemlina, a palliative care physician in San Diego, who attended the screening. “For me, it is like saying that pain is expected, and nothing could be done. We are relieved that it is not the case. I think it is time to ‘recalculate’ the problem and move in the right direction. A long time overdue!"
Jenny Hunt, a palliative care social worker and bereavement therapist from Harare, said that, “It reminded me how tiring it must be for patients to answer questions so often,” and that caregivers should be aware of this, and try to reduce that burden. “Rick's accounts were wonderfully honest. I thought it was all so well handled. Everyone can learn from this.”
Participants in the screening included members from:
The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce that, as part of its Scholarship program, it will be awarding 30 scholarships for three online conferences in 2021.
Last month, IAHPC announced 10 scholarships for the 17th World European Association for Palliative Care Congress online being held October 6-8. This month, IAHPC has added:
The deadline to apply for a scholarship to any of the three conferences is June 30, 2021. Results will be announced late July 2021.
Applicants from all disciplines are welcome. Applicants must meet the following criteria:
Preference will be given to applicants who:
More detailed information about the application process and the online form are available on the IAHPC website.
Release your inner photographer!
IAHPC invites members to participate in its 2021 IAHPC Photo Contest, where three prizes will reap winners both cash and an extension to their membership:
The deadline to submit your photos is May 31, 2021. The winners will be announced at the end of June.
The photos, which may be published in this newsletter and/or used on the IAHPC website, is an opportunity to show palliative and hospice care in action in your institution or community. Images could depict clinical practice, teaching, caregiving, daily life, or other settings that support one of the four IAHPC thematic areas of work: advocacy, education, research, and information dissemination.
Storytelling is at the heart of the IAHPC Newsletter, and photos are a compelling companion to this mission. Photos showcase our members’ practices and experiences around the world, inspiring and informing the global IAHPC community.
A group of IAHPC staff and board members will judge the submitted photos, which will be anonymized so that images will be judged solely on merit.
IAHPC’s 2020 Annual Report offers a sweeping review of the organization’s activities during 2020.
The report opens with a foreward by Chair of the Board Lukas Radbruch and Executive Director Liliana De Lima, who note that, “This pandemic hurt our membership in many ways and forced us all to adapt to unforeseeable circumstances.... [W]e are proud of our ability to achieve new things, including much-improved webinar hosting skills, online course provision, and digital networking.”
The report outlines thematic areas of work; goals, outcomes, and outputs; and the 2020-2024 roadmap. Then it groups reporting of activities into the following sections:
The report also includes detailed information about finances, fundraising, and governance. It concludes with a series of annexes detail grant recipients, financial statements, and donors.
You can download the full report here.
Qualitative results from a 2019 survey of IAHPC members are reported in an article published online by Palliative & Supportive Care titled “The Impact of COVID-19 on Palliative Care Workers across the World: A qualitative analysis of responses to open-ended questions.”
Tania Pastrana, IAHPC’s research advisor, is lead author of the article, which describes economic, financial, and emotional impacts on members around the world. Go to Under My Microscope for more details, the abstract, and a link to the full article.
Do you know of a palliative care institution that shows extraordinary leadership? Is yours one of them?
The European Association for Palliative Care (EAPC) and the European Palliative Care Academy (EUPCA) are collaborating on the third Leadership Education in Palliative Care Award. The award is designed to honor the importance of improving leadership education worldwide; it acknowledges leadership development programs, recognises excellence, and promotes leadership as an integral and important part of palliative care.
The winning institution is awarded one registration to the 17th EAPC World Congress Online in October.
Go here to find out more. The deadline for applications is May 31, 2021. For questions, contact [email protected].
A source of information about children’s palliative care around the world, ehospice has resumed its weekly newsletter. Sign up to receive it here.
To learn more about, the Kenya Hospices and Palliative Care Association (KEHPCA), Fasiuddin Khan Research Foundation, CanSupport, Hospice Africa Uganda, African Palliative Care Association (APCA), Barbados Association of Palliative Care (BAPC) visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.
Starting, as it did, when the Internet was becoming mainstream, IAHPC saw the potential of a vibrant website as a way of serving its members and promoting palliative care globally. The IAHPC website, launched in the early 2000s, has had at least three redesigns driving traffic, which surged.
Pallipedia: A hit! This online palliative care encyclopedia is one of the brightest stars of IAHPC’s Internet resources offered free of charge. Created by Dr. Roberto Wenk in 2010 (and still maintained by him), Pallipedia is a hugely popular resource that further soared in activity when the pandemic hit, as thousands sought clarification on the term “ethical principles” alone. In January 2020, the newsletter began listing all newly added terms.
Note: Pallipedia was temporarily offline in 2016 and part of 2017. It now averages 440 pageviews every day!
Opioid Price Watch A project to monitor the dispensing price of opioids worldwide culminated in 2016 with an interactive, ongoing map.
Global directories Seeking to become trained in the field? Our Directory of Educational Programs in Palliative Care is a fount of information on 300 programs around the world. And our Directory of Palliative Care Institutions and Organizations now has an astonishing 2,135 listings. Both directories are updated regularly by Coordinator of Directory Services, Julia Libreros.
The Serious Health-Related Suffering (SHS) Database uses an interactive atlas estimating numbers of patients with conditions causing SHS in most of the world’s countries against a baseline measure of Distributed Opioid Morphine Equivalent (DOME).
“The Newsletter first appeared in April 1996, literally arising from our dining room table. [...] As we all became more Internet savvy, contributors changed from phone and fax to e-mail communication. I learned to use Microsoft Publisher and finally was trained to upload the Newsletter to our server without endangering the integrity of the entire Web site. After Anne Laidlaw became our webmaster and distribution guru, the entire site and format of Newsletter took on a fresh new dimension and the number of hits per month skyrocketed.”
—Dr. William Farr, from an Editor’s Note in 2005
Advance Care Planning for Children with Life-Limiting Conditions. Free webinar via Zoom. April 13, 2021.
22nd World Congress of Psycho-Oncology & Psychosocial Academy. “Diversity, Dialogue and Altruism.” Online. May 26-29, 2021.
Virtual Advanced Pain & Palliative Care Workshop. Hosted by pediatric palliative care organization Fondazione Maruzza. Online. October 25-28, 2021.
National Conference for Children's Palliative Care, Malaysia 2021. "Supporting from the Beginning." October 7-9, 2021. Kuala Lumpur.
Symposium 2021—Whetū i te Rangi. A symposium for enhancing care towards the end of life for Māori. May 3, 2021. Wellington.
MNHPC 2021 Annual Conference. “The Best Care Possible.” Online. May 10-11, 2021.
NHPCO 2021 Virtual Conference: Focusing on Transformation. Online. July 29, 2021.
NHPCO 2021 Interdisciplinary Conference. September 18-22, 2021. Memphis, Tennessee.
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!