Volume 24, Number 7: July 2023
EAPC Congress: On Equity, Diversity, Compassionate Care & Euthanasia
By Katherine I. Pettus, PhD
IAHPC Senior Advocacy & Partnerships Director
The European Association for Palliative Care World Congress held mid-June in Rotterdam was a very happy event, full of friends and reunions, and excellent presentations. I spent most of my time at our IAHPC table, talking to people who stopped to find out more about who we are, and chatting with the IAHPC board members and scholars who came by and helped. Our scholars were:
- Diana Beglaryan from Yerevan, Armenia;
- Miguel Bayona from Neiva, Colombia;
- Farah Demachkieh from Beirut, Lebanon; and
- Lisa Christine Irumba from Kampala, Uganda.
Our attending board members, Drs. Victoria Hewitt and Maya Jane Bates, were very helpful in bringing people to the table and describing how and why IAHPC plays a unique and necessary global role in education, research, information dissemination, and advocacy. Dr. Lukas Radbruch stopped by the table several times, as did Dr. Skip Radwany, a former board member.
Dr. Hewitt chatted to potential members about how our online advocacy course, which teaches the global legal framework supporting palliative care, "has given me the words" to confidently participate in policy and development programs. This educational offering to our members, only one of many, sets IAHPC apart as an organization in official relations with the World Health Organization and in consultative status with the United Nations Economic and Social Council. Dr. Bates won an early cancer researcher’s award at the congress for her groundbreaking work on the economics of palliative care given the financial toxicity of current payment models.
Prison Task Force presentation
The EAPC funded my travel to Rotterdam because I am a member of the Task Force on Palliative Care for Prisoners and gave a scheduled presentation on the laws and international agreements that require governments to provide palliative care for their incarcerated populations. These include growing numbers of chronically ill and older people near the end of life—just as in the outside population. Universal provision of palliative care in prisons is a goal that is far from being met, especially in countries like the US and the UK, which lock up some categories of offenders for life. You can see a copy of my presentation here.
Dr. Mary Turner, our task force leader, then presented the data from its recent survey to provide a description of palliative care in prisons, based on interviews in more than six countries, including Australia. This is the first project of its kind in the world. Dr. Turner’s presentation was followed by a video by Lisa Deal, PhD, of Humane Prison Hospice in the California bay area, where prisoners at San Quentin are trained to take care of fellow inmates near the end of life. Deal showed a clip of the Academy Award-nominated film Prison Terminal, which tells the story of a veteran who dies in a prison hospice in Iowa.
I had the pleasure attending a couple of plenaries that addressed the EAPC congress theme of equity and diversity, including one by former IAHPC board member Dr. Zipporah Ali, who won an EAPC award for her leadership of the Kenya Hospice and Palliative Care Association. Dr. Ali stressed the importance of advocacy, community, and mentoring in the hard work of relieving serious health-related suffering at the community level.
The next EAPC World Congress will be held in Helsinki in 2024. Plan to submit an abstract and apply for a scholarship when we send out the announcements next year!
On a personal level, I found Rotterdam, the largest port in Europe, to be an effervescent young city teeming with life and art and all the mod cons. It was entirely rebuilt after the Nazis bombed it to rubble during the Second World War. It is cosmopolitan—you see people from all over the world—yet the contrast between a conference promoting palliative care equity and diversity in Holland, and its liberal euthanasia policies, is both thought-provoking and disquieting.
The city’s effervescence is individualistic and self-promoting, a veneer of sophistication over a culture of abandonment of those who are less able to compete or shine—those with mental and physical disabilities who have no place in such a no-nonsense ethos (to quote a phrase of one of the Dutch plenary speakers at the conference). Requests for euthanasia, even by young and physically healthy people suffering from autism, are approved if their suffering is deemed "incurable" because they will never meet the society’s standards of belonging. Palliative care has not evolved to address this kind of suffering, which is a crisis of solidarity and community.
The compassionate communities movement was formed to address this sort of social suffering, which is related to the crisis of loneliness. IAHPC will host a Webinar featuring the Spanish and Latin American compassionate communities movement on October 14, World Hospice and Palliative Care Day. I also serve on the council of Public Health Palliative Care International, which promotes a de-medicalized, community involvement model of palliative care.
A great advocacy tool:
WHO report on morphine
The medicines department of the World Health Organization (WHO) has published a new report in all the UN languages titled, Left Behind in Pain: Extent and causes of global variations in access to morphine for medical use and actions to improve safe access.
“Leaving people in pain when effective medicines are available for pain management, especially in the context of end-of-life care, should be a cause of serious concern for policymakers,” says Dr. Yukiko Nakatani, WHO Assistant Director-General for Medicines and Health Products. “We must urgently advocate for safe and timely access to morphine for those in medical need through balanced policy, everywhere.” The Lancet also published on June 24 an excellent editorial on the topic that included an interview with Kiusiang Tay-Teo, PhD, lead author at WHO and IAHPC’s Technical Focal Point. I was honored to join the group of senior palliative care experts in preparing the text. Please take the time to review the report and send it to your contacts at the regulatory and health ministries in your countries. If you need any help with this, feel free to contact me in August, when I return from a break.
Regional workshop on controlled substances
I presented on the importance of consulting civil society to improve availability of opioids at the International Narcotics Control Board (INCB) Learning program's virtual workshop in June to raise awareness about the availability of internationally controlled substances for medical and scientific purposes. The workshop was part of INCB's ongoing efforts to support member states in ensuring that essential controlled medicines are available, while preventing their diversion and misuse.
The event brought together a diverse group of stakeholders, including officials from the competent national authorities of seven Russian-speaking countries: Armenia, Azerbaijan, Belarus, Kyrgyzstan, the Russian Federation, Tajikistan and Uzbekistan. It also included representatives from palliative care associations, experts in drug control and public health, the Chair of the Commission on Narcotic Drugs, the United Nations Office on Drugs and Crime (UNODC), and other partners. IAHPC Board Member Dr. Gulnara Kunirova gave a presentation from Kazakhstan discussing the situation there. You can see my presentation here.
Upcoming UNODC Webinar
The United Nations Office on Drugs and Crime, in association with the Vienna NGO Committee on Drugs, has organized a "Webinar for Civil Society" on its World Drug Report released in June.
The Webinar is scheduled for July 19, 2023 at 3 p.m. to 4:30 p.m. CEST (Vienna time, UTC +2). Anyone can register. The meeting is in English, but there will be simultaneous translation in French, Russian, and Spanish. The speakers will be Chloe Carpentier, chief of UNODC's Drug Research Section, and Professor John Toumbourou, with the Dalgarno Institute in Australia.