Volume 24, Number 3: March 2023

Institutions to Celebrate: IAHPC Recognition Award winners

Congratulations to IAHPC’s 2022 institutional Recognition Award winners: ORJEDEC, Bangalore Hospice, and Ryder Albania Association.

“The IAHPC Recognition Awards Program recognizes individuals and institutions dedicated to alleviating serious health-related suffering of patients and their families in order to improve their quality of life,” says IAHPC Executive Director Liliana De Lima. “Through this program, we bring these individuals and institutions to the attention of policy makers, other institutions, and relevant organizations.”

While one award is normally given to each of three income categories, this year two awards were given for the middle-income country category, as no submissions were received from high-income countries. Each winner was awarded USD $1,000 and a one-year membership.

Next month’s issue of the newsletter will include the winners of the Recognition Awards for individuals.

The entries were assessed by a group of IAHPC’s Board of Directors: Mary Callaway, Maria Cigolini, Natalie Greaves, Gulnara Kunirova, and Roberto Wenk.

ORJEDEC, Tabligo, Togo 
Low-income country category

 “ORJEDEC appeared to be doing its best with the little it has,” says Greaves. “They are focussed on prioritizing care for conditions that affect their population the most. For example, including chronic foot wound care for those with diabetes is commendable and shows an evidence-based approach to their work. With limited resources and patients and families that can struggle to access care, the value of their ambulatory service was evident, and I believe the award will assist this team with their work.”

ORJEDEC provides palliative care for children and adults, trains health care professionals and caregivers, and advocates locally, nationally, and internationally. Key activities are: promotion of palliative care, prevention of serious diseases (such as cancer, HIV/AIDS, diabetes, etc.), and nutrition and counselling.

“They demonstrate a firm commitment to their mission,” notes Radwany.

Editor’s note: ORJEDEC was profiled in the September 2022 issue of the IAHPC Newsletter.

The Karunashraya team. Photo used with permission.

Karunashraya/Bangalore Hospice Trust, Bangalore, India 
Middle-low-income country category

Karunashraya, or Bangalore Hospice Trust, provides free palliative care to advanced-stage cancer patients who are beyond cure. “The Bangalore program is an example of a palliative care center of excellence,” says Callaway. “It offers the full complement of services, including inpatient hospice care, home care, and consultation. It serves adults and children, and has established standards and policies for monitoring and evaluation to help maintain the highest quality of care.”

At Karunashraya, patient care includes pain control, treatment of symptoms, and improving health where possible, but the institution also fosters meaningful interactions between patients and their families; provides counselling and art and pet therapies to improve spiritual and emotional well-being; and keeps patients and families informed so that considered choices can be made. It holds educational activities for medical, nursing, and postgraduate students, raises public awareness, and works closely with the government to integrate palliative care into health care policies and improve availability of essential medicines.

“Its staff, volunteers, managers, etc. have shown a strong commitment to the delivery of high-quality palliative care to patients suffering the challenges associated with advanced progressive cancer in their region,” says Greaves. “The level of organization and use of an evidence-based, systematized approach as well as their quest to advance care through research is highly commendable.”

The Tirana team of Ryder Albania Association: Fatmir Prifti, Rudina Rama, Raluca Muntean, Ali Xhixha, Marinela Pane, Anila Sinani, Liliana Xhixha, Vladimir Pojani, Edmond Drazhi, Ornela Çeçolli, Albana Uka, Hajrie Çopa, Marjeta Rroshi, Dashnor Bashi, and Ilvana Kllomollari. Photo used with permission.

Ryder Albania Association, Tirana, Albania 
Middle-high-income country category

Ryder Albania Association began in 1993 as Sue Ryder, the first palliative care provider in the country, offering free home help services—medical, psychological, and socio-economic—for terminally ill cancer patients and older people with chronic diseases. Its pioneering achievements include: opening Albania’s first hospice, and successfully lobbying to increase the number of medications reimbursed by the government. Its advocacy helped shepherd the country’s adoption of a national palliative care strategy, action plan, and service delivery standards. Work is now underway to draft a palliative care law.

“The work of this institution highlights the importance of a community-based primary approach in palliative care delivery and the potential for advancing care through advocacy using a hub and spoke/satellite model,” says Greaves. “The care providers at Ryder also demonstrate a high level of commitment to advancing education, with a clear strategic plan for growth and development of the service.

“Their goals are ambitious but clear,” says Radwany. “I appreciated them laying out both their short-term and long-term goals. The leadership shows great vision and perspective. It is likely to be very successful in the long term!”

World Day 2023 Theme: Compassionate Communities

On Saturday, October 14, 2023, World Hospice and Palliative Care Day will celebrate and foster compassionate communities: both the ideal and the reality. “Palliative care is a shared responsibility,” writes Steven Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance, which initiated World Day and tracks its activities, citing “the continued need to come together to support communities and each other now more than ever.”

Creating compassionate communities is the foundational goal of Public Health and Palliative Care International, which describes them as “mostly groups of neighbors living close to each other in villages or suburban areas that come together to organize a way to support people in their own area who are living with life-limiting illness, caregiving or grief and loss. Often these compassionate communities are inspired or facilitated by local hospice or palliative care services[.]”

Global PC Database Is Ready for More

The IAHPC Global Palliative Care Database experienced a recent glitch that caused some loss of data; 375 listings remain and the glitch was fixed. The database, created in 2021, is a record of initial palliative care consults that maintains patient anonymity. The database shows the similarities and differences among reasons for referral—including prevalent symptoms at the time of the consultation—and time of referral to palliative care services, as well as prescribed therapeutic interventions and referrals to other disciplines.

The more patients included in the database, the more useful it becomes; consider adding your first consult information, if your institution allows. Participating IAHPC members have access to all general, demographic, and clinical data.

Future Projects Outlined at IAHPC Board Meeting

The IAHPC executive initiated a group meeting on Zoom in February for all 2023 board members to give them an overview of the organization, be introduced to staff members, and, most importantly, come together as a team despite the continuing pandemic, travel restrictions, and IAHPC’s ongoing budgetary concerns.

Current and future projects as well as established IAHPC resources for its members and the general public were described. (Our “Key Courses and Resources” box highlights some resources each month.)

One upcoming project is a new phase of the Opioid Price Watch Project.

In its first phases, IAHPC members visited pharmacies on an agreed-upon day to collect information on the availability of five opioids (fentanyl, hydromorphone, methadone, morphine, and oxycodone) in 13 formulations. It was further expanded to include how many days an employee, earning a typical wage in that country, would have to work to afford a single 30-day prescription. The results are accessed via a world map. As an example, in the Sudan city of Khartoum, a patient could receive an opioid-based medicine for free, while in nearby Kigali, Rwanda, the same prescription would have required 53.5 days of work.

“Though the sample size is not large,” said IAHPC Board Chair Lukas Radbruch, “it is a very valuable resource. These medicines are not affordable if those suffering pain cannot pay for it. It really makes decision-makers opens their eyes and reconsider” policies surrounding availability, affordability, and universal health coverage.

In the new phase, the IAHPC plans to both update the information displayed on the map and add more reports from pharmacies around the world.

This is just one example of work now underway at the IAHPC, thanks in part to its active board members. Members and newsletter subscribers will be kept informed as plans mature and new, useful resources and projects are unveiled.

Tidbits

Caregivers in India speak about their challenges

Empowering Women Caregivers: Lessons from South Indian Community-Based Palliative Care is a Webinar taking place on Wednesday, March 15, at 9 a.m. EST/ 6:30 p.m. IST. Participants will hear from two caregivers on the physical and emotional challenges of caring for loved ones. Panelists include Preethi Srinivasan of SoulFree, Thara Rangaswamy of Schizophrenia Research Foundation, Mridu Gupta of Cancer Awareness, Prevention and Early Detection Trust (CAPED), and Smriti Rana of Pallium India.

In 2022, Pallium India was granted consultative status with the Social and Economic Council of the United Nations (UN). As a result, it can provide technical and knowledge support to agencies and officials from member states and governments. This Webinar is part of the UN Commission on the Status of Women, the largest conference focusing on gender equity in the world, taking place in March.

Oceanic Conference Abstract Deadline

You’ll have to hustle to make the March 15 deadline to submit an abstract to the Oceanic Palliative Care Conference taking place in Sydney, September 13-15, 2023. The theme of the conference, being held in person for the first time since 2019, is, “With the End in Mind: Shaping stronger health systems, delivering quality palliative care.”

Nominations Open for Cynthia Goh Award

The Asia Pacific Hospice Palliative Care Network (APHN) has launched the Cynthia Goh Award in remembrance and recognition of Dr. Goh’s enormous contribution to the field.

Nominations are being accepted until June 30, 2023. The award recognizes the impact of an individual who promotes the development of palliative care within their region or around the world. The APHN further specifies that the individual will have:

• contributed to building capacity, advancement, and provision of palliative care; and
• dedicated themselves selflessly to promoting and supporting the alleviation of pain and suffering from life-limiting illnesses of patients and their families in order to improve their quality of life.

New Edition of Wound Care Guide

It has been brought to our attention that a second edition of Wound Care at End of Life: A Guide for Hospice Professionals by Joni Brinker, Bridget McCrate Protus, and Jason M. Kimbrel was published in 2018. The first edition, published in 2013, was assessed by our longtime book reviewer, Dr. Roger Woodruff, who recommended it highly, saying, “It’s short, clear, and well set-out with algorithms and treatment tables…useful to the experienced professional as a quick treatment lookup tool, and as a learning guide for those less experienced.”

Hindi Course on Pediatric Palliative Care

The International Children’s Palliative Care Network has launched its first Hindi e-learning course, now online, an Introduction to Children’s Palliative Care: ?????? ?? ??????? ?????? ?? ?????. The course addresses the problems of palliative care, which children need palliative care, the gap between adults and children's palliative care, and the global situation.

What’s New in the Calendar

New listings

Access all items in the IAHPC Calendar of Events.

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