2020; Volume 21, No 4, April
IAHPC News
A Dedicated Page of Resources for Palliative Care & COVID-19
On March 27, “in the spirit of solidarity with our members and colleagues around the world,” the IAHPC launched a web page, Resources Relevant to Palliative Care and COVID-19. The page is an ongoing compendium of relevant documents published by peer-reviewed journals, civil society organizations, member states, and specialized agencies of the United Nations. The site includes links to each document.
We encourage anyone with resources that should be included to send us the information by clicking on “Contact us” on the web page.
Frontline Reports on Impact of the COVID-19 Pandemic
The rapidly evolving nature of the COVID-19 pandemic is a challenge to this newsletter’s capacity to report on events in a timely manner. We do want to share strategies and information though, especially from our members in the low- and middle-income countries that are our primary focus.
IAHPC will publish your accounts in the newsletter and also on our website in the Members' section. Reports could include:
- how you are preparing for and handling the epidemic (including success stories),
- its impact on your practice, and eventually,
- how you are recovering.
Please include photos if you have permission to use them. Send your submission to Advocacy Officer Katherine Pettus or Newsletter Editor Alison Ramsey.
Thank you in advance, and please take care of yourselves.
In this issue, we hear from
Malaysia & South Africa
Malaysia, February 29, 2020
Update by Dr. Ednin Hamza, Hospis Malaysia, entering Day 3 of providing community services in a restricted movement/lockdown situation.
Challenges:
Dr. Ednin Hamza
- Lack of protective equipment. My team only has enough full PPE to see patients for one day; using just basic masks and hand sanitizers, we could last 2 weeks. I have about 400–450 patients under care at any point. Medical supplies have become exceedingly difficult to get. We have been quoted a 700% price increase for masks that would be delivered in May.
- Police roadblocks. The police are not familiar with community health care workers and have questioned their identification.
- Patients and caregivers. They fear our team bringing infection (one team member was sprayed with bleach!). Yet many homes continue to welcome family members and visitors, who have not respected orders to stay at home.
- Staff issues. Childcare is an issue for those with children and those whose partners also work in health care.
- As a charity, we expect that we may have no income for months. Our financial projections will need to be reassessed.
- In the longer term, the mental health of my team in these difficult situations may become a concern.
Motivators:
- Team support. I am really very happy that I have 100% support from all my team members to continue providing care.
- Connection with others. I am in contact with colleagues from Malaysia and other countries in the region and elsewhere, and there is a connection between palliative care workers and a spirit of togetherness that helps greatly. When I hear about countries with fewer resources, I think that actually I am in a fairly “good” situation.
South Africa, March 23, 2020
Update by Joan Marston, RN, Coordinator PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies).
As we wait to see the impact of COVID-19 in South Africa and watch the frightening developments in countries like Italy and the U.K. with some of the strongest health systems in the world, we are preparing for an expected humanitarian crisis both here and throughout sub-Saharan Africa.
Joan Marston
How do we prepare and then cope when COVID-19 grows rapidly in a country like South Africa, where 7.8 million people have HIV with only 60% on anti-retrovirals, where the highest mortality is from TB, and where the present health system is fragile — with a shortage of 48,000 nurses and only 4,000 ICU beds. Add to this that over 50% live in poverty with many in crowded shacks with no access to running water: much of the advice coming from the northern hemisphere will be difficult to implement. Many will consult traditional healers before formal health services, so isolation may be delayed. Cultural beliefs and practices could impact negatively on preventative measures.
Hospices provide most of the palliative care in South Africa, 98% in the community with a few inpatient units across the country. While South Africa has an excellent National Palliative Care Policy, it has yet to be funded and implemented. Palliative care is heavily dependent on charitable funding, which has already dropped significantly. But — as we do in palliative care — we hope for the best and prepare for the worst. Having lived and worked through the AIDS epidemic in the 1980s and ‘90s, we know there are lessons to be learned.
Resources are limited and volunteers are making fabric masks and protective clothing. Soap is available, but for a poor family struggling to have one meal a day, extra soap means giving up an essential loaf of bread. Hospices are providing soap, hand sanitizer, cleaning agents, and food. Home visits are limited to essential visits only, with advice and support given over the phone, WhatsApp, and texts, where possible. Our poorer patients — who form the majority of our patients — do not have suitable phones for WhatsApp, money for call time, or Internet access.
Where there is no running water, we bring 5- to 25-liter drums with taps, or show people how to make a Tippy Tap (a hands-free washing device) with an empty 2L plastic milk bottle. Community health workers, who often come from the communities they serve, have become trainers for their patients and families, their own families, and their communities. Palliative care practitioners will assist with guidance for care of the dying and bereaved, can provide assistance with symptom management, and are there to give spiritual and psychosocial support. As we continue to provide palliative care to all who require it, wherever they are.
We are expecting a humanitarian crisis when COVID-19 hits the township and informal settlement areas, and recommend guidance from the WHO, Integrating palliative care and symptom control into humanitarian emergencies and crises, and the two chapters that are open access from the Field Manual for Palliative Care in Humanitarian Crises.
Editor’s note: Read Roger Woodruff’s review of A Field Manual for Palliative Care in Humanitarian Crises. Oxford University Press has made two chapters open access:
- Chapter 2: Palliative Care Needs of People Affected by Natural Hazards, Political or Ethnic Conflict, Epidemics of Life-Threatening Infections, and Other Humanitarian Crises; and
- Chapter 9: Care of the Dying Patient
Editor’s note: Sphere Standards, an organization that authored and updates a longtime handbook describing minimum standards of care in humanitarian work, has produced a four-page document, Sphere standards and the Coronavirus response, that reviews emerging practices in the outbreak response, including the importance of community engagement and a review of technical guidance.
The handbook and document, free to download, are in 10 languages: English, Arabic, Bahasa Indonesia, Chinese, Farsi, French, Japanese, Portuguese, Spanish, and Urdu. Other translations are being sought.
Dr. Felicia Knaul joins IAHPC Board
Dr. Felicia Knaul
Dr. Felicia Knaul, lead author of the 2018 Lancet Commission on Palliative Care and Pain Relief, has joined IAHPC as a Member of the Board.
“Felicia is a highly qualified global health expert and a recognized leader in the field of health economics and health systems analysis, and we are extremely fortunate to have her on board,” says Executive-Director Liliana De Lima. “During her tenure with the board, she will continue working in close alliance with us in the implementation of the recommendations in the Lancet Report.”
Dr. Knaul, in accepting her new role with IAHPC, says, "Working with Liliana De Lima and Lukas Radbruch on the Lancet Report was an incredible learning experience, and I look very much forward to this new opportunity for collaboration and exchange. It will be an honor as a well as a pleasure to continue our work together, and now also with the esteemed members of the IAHPC Board."
Dr. Knaul replaces Professor Julia Downing, who has served two consecutive terms and was therefore not eligible to continue. Given Professor Downing’s expertise and commitment to the field, IAHPC invited her to serve as an advisor to the board. We are delighted that she has accepted.
IAHPC Releases 2019 Annual Report
The IAHPC 2019 Annual Report, now available on our website, looks back on our accomplishments last year, introduces new initiatives, and reviews ongoing programs. It describes:
- Our 2020-2024 Roadmap
- Programs (Traveling Fellows/Scholars, Advocacy, Library Program)
- Membership
- Projects (Consensus-Based Palliative Care Definition, Pallipedia)
- Communication (Website, International Directories, Calendar of Events, Newsletter, Social Media)
- Finances, Fundraising, and Governance
The Annual Report is published as part of the IAHPC’s ongoing commitment to transparency.
IAHPC Earns GuideStar Platinum Rating
GuideStar USA, Inc. is an information service specializing in reporting on U.S. nonprofit organizations, encouraging them to showcase progress and results in ways that go beyond the data. The IAHPC’s GuideStar profile has earned us a Platinum Seal, the highest ranking.
You can see our GuideStar listing here. Platinum designation means that the IAHPC has been rated as an organization that measures its progress and results, and makes that information publicly available. GuideStar ratings are intended as a tool to attract donors, who can access information that goes beyond “overhead ratio.”
Reader Recommended
I recommend The Complete Guide to Autism & Healthcare: Advice for Medical Professionals and People on the Spectrum by Anita Lesko, published in 2017. There is very little knowledge about how adults on the autism spectrum engage with health care providers and, in particular, palliative care services. This book offers useful insights for interdisciplinary health care teams working with patients on the autism spectrum. The author provides a unique perspective as a qualified health care professional and individual on the autism spectrum.
— Jennifer Lowe, PhD candidate, La Trobe University, who is embarking on research into how adults on the autism spectrum engage with palliative care settings. Those interested in participating, via phone, can contact her here.
What's New in Pallipedia
Six terms and definitions have been added to IAHPC’s online palliative care dictionary, Pallipedia, bringing the total to 1,317 terms and 1,686 definitions.
The new definitions are:
- Hyponatremia
- Hyponatremia treatment
- Physical examination
- Psychomotor agitation
- Sedating agitated patients
- Suicide in patients with terminal conditions
Do you have any questions regarding Pallipedia?
Changes to the IAHPC Calendar
Some listings have been withdrawn from the IAHPC Calendar of Events due to cancellations following the outbreak of COVID-19. If your conference, congress, or course has been cancelled or postponed, please contact Julia Libreros to update your listing.
All public programs offered by St. Christopher’s Hospice in London, England, have been cancelled until further notice; registrants can apply for a refund or transfer to a future date. See below for changes to April, May, and June listings.
April
Argentina: Curso de Cuidados Paliativos para Emergentología. Online course. April 22-July 22, 2020, Buenos Aires.
Croatia: ICIC20 – 20th International Conference on Integrated Care, April 27-29, 2020. Postponed to an as-yet undetermined date.
USA: ADEC 2020 Annual Conference, April 28-May 2, 2020. Cancelled: all fees will be refunded and the registration cancellation policy will not be enforced.
May
U.K.: Rising to the Challenge in Nursing Conference, May 5, 2020. Cancelled. Registrants can get a refund or transfer to a future date.
Italy: EAPC World Research Congress, May 14-16, 2020. As of press time, conference organizers’ published statement, dated March 17, is that “we must wait for an announcement from the Italian Government” regarding meetings in May.
U.K.: Service Organisation & Policy in Palliative Care course, May 26-June 5, 2020. Will be held online only.
June
U.S.: 3rd Interdisciplinary Pain and Opioid Crisis Seminar — Best Practices in Cancer Pain Management in the Era of the Opioid Crisis. June 1, 2020, Houston, Texas.
Malaysia: 1st National Conference of Children’s Palliative Care Malaysia, June 25-27, 2020. Postponed to August 24-26, 2020.
Guyana: CARIPALCA Inaugural Conference. June 7, 2020. Georgetown.
As of March 23, 2020, there were no changes to other event listings for June and July.
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. Submit your contribution.
- 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.
- Deadline: 20th of each month.
- Images should be in JPEG format. 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.