Palliative Sedation Is Not a Form of Assisted Suicide
By Katherine I. Pettus
IAHPC Senior Advocacy and Partnerships Director
The prison/workhouse in Belgium, now a hotel. Photo by Katherine Pettus; used with permission.
An April highlight was the invitation to attend an in-person palliative sedation symposium in Vilvoorde, Belgium. The symposium was a project of Horizon Europe (formerly Horizon 2020 Research & Innovation Action) that brought together palliative care centres, universities, and patient and professional advocacy organizations from eight European countries: Belgium, Romania, Spain, and the United Kingdom. Delegates stayed in a beautifully restored hotel that had once served as a prison, where English theologian and preacher William Tyndale was executed in 1536, and later as a workhouse with 1,200 cells.
It was a short walk from the hotel to the symposium, where I learned that palliative sedation (PS) is a clinical intervention described by the European Association for Palliative Care (EAPC) as “the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family, and health-care providers.” A systematic review of studies show it has no life-shortening effect and is not a form of “slow euthanasia.” As such, it cannot be considered an “assisted suicide” practice intended to induce the death of the patient. All the symposium presentations made it clear that the goal of PS is to relieve refractory suffering and, as such, should be seen as an integral part of palliative care.
Sedation can be heavy, or light
I was very interested to learn from a presentation by radiation-oncologist professor Dr. Johan Menten that there is no evidence showing that PS patients die earlier than non-sedated patients. PS doses can be titrated from light to deep sedation, depending on the degree of patient suffering. Some people wake up from light sedation and start speaking to their families again, their suffering relieved. In such cases, waking up is not considered a “failure,” especially when those all-important interactions with loved ones can take place before the end. I wish that my mother had benefited from PS in her last days.
It cannot be overemphasized that training in all aspects of PS, including clinical procedures, ethics, and “moral deliberation” including caregivers, the patient whenever possible, and the clinical team is crucial. The University of Lancaster runs a MOOC (massive online open course) on “Dying Well” taught by Dr. Sheila Payne and other senior faculty who attended the symposium. I recommend signing up for the next one on May 20 (free access expires on May 26) if you are interested in learning more about the topic. Participants in the project presented their research, which has been collected in the free, downloadable eBook, The Role of Palliative Sedation in Palliative Care.
In May: Interfaith Symposium on Palliative Care
I received another welcome invitation to present at the in-person International Interfaith Symposium on Palliative Care in Toronto, Canada, May 21-23. My talk is titled “Palliative Care as Witness: Towards a narrative of hope,” to align, as requested, with the symposium theme, “Towards a Narrative of Hope.”
The Canadian Conference of Catholic Bishops, in collaboration with the Pontifical Academy for Life (PAV) and other key partners, is hosting the symposium “to strengthen hope for end-of-life issues within the Catholic church, other faith traditions and society.”
The goal is to build a strong advocacy network for effective and comprehensive palliative and end-of-life care. Regular readers of my column might remember that the IAHPC and many colleagues from other organizations around the world collaborated with the PAV to produce a white paper and White Book for Global Palliative Care Advocacy in 2018.
From Toronto I fly to San Diego to accompany a close family member with a terminal diagnosis.
Preparing for the 77th World Health Assembly
The IAHPC, as a non-state actor (NSA) in official relations with the World Health Organization, has been invited—as we are every year!—to send a delegation to the 77th World Health Assembly (WHA), taking place May 27-June 1. As NSA delegations are limited to six people, our delegation will include IAHPC board member Natalie Greaves, Afsan Bhadelia, Sherin Susan Paul, Regina Okhuysen-Cawley, Megan Doherty, and Richard Bauer.
We are meeting weekly at the moment to familiarise ourselves with the agenda and prepare our oral and written statements. These will be given orally on the floor of the assembly in real time, and posted on the WHO Extranet for review of all delegations.
Keep an eye on our social media platforms for news from the WHA. We are also planning a virtual side event with City Cancer Challenge in early June to highight the implementation challenges and future potential of the “palliative care resolution” WHA67/19 on the 10th anniversary of its adoption in 2014. We will share more details on the side event, including how to register, as they become available.
Call for IAHPC delegates: WHO Regional Meeting for Europe
The opportunity to serve on an IAHPC delegation at multilateral meetings such as the World Health Assembly, the Commission on Narcotic Drugs, and regional meetings of the World Health Organization (WHO) is just one of our many membership benefits. Serving as a delegate provides an excellent opportunity to meet colleagues from around the world, to interact with your government representatives, and to learn about advocacy by doing it.
If you are interested in learning more about this key role, which can help advance palliative care in your country, please take my advocacy course and fill out the application form. Members in Europe are encouraged to apply for the delegation to attend the regional meeting in Copenhagen, October 29-31. You can read the report of one of last year’s IAHPC delegates—Irena Laska from Albania—here, and find out more about the Europe meeting here. The 75th Meeting of the WHO Western Pacific Region, will also be held in October, but no information has yet been posted. Members of the Western Pacific Regional Office wishing to apply could also take the course if they have not already and fill out the application form.
Successful Advocacy in Uganda
The Palliative Care Association of Uganda (PCAU) hosted an informative webinar on April 25 about the new 2023 Uganda Narcotics Law on Narcotics and Psychotropic Substances (Control) Act, an update of the 2015 Narcotic Drugs and Psychotropic Substances (Control) Act. The text of the earlier, strongly prohibitionist, drug control law did not cover nurses who often transport oral morphine over long distances in rural and urban areas, putting them in danger of severe legal penalties. PCAU’s effective multisectoral advocacy, which included the police force, the Ministry of Health, and parliamentarians, among others, was successful in changing the law to give nurse prescribers in Uganda legal status in a way that exempts them from prosecution. Patients and families can also transport oral morphine to their homes if they have a proper prescription.
Advocacy tip Watch this webinar recording for ideas about how you might improve availability of oral morphine in your setting. The passcode is: 1j!JT^V6
Stay tuned in June for news from the World Health Assembly!
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