Africa
IAHPC’s goal of quality palliative care for those in need is on point in an ideal world that few countries attain—leaving a vacuum on how to act.
Jennifer Hunt
Clinical social worker specializing in palliative care and bereavement, Harare, Zimbabwe
The 25% response rate (which seems very low) deserves debate.
The result that many palliative care providers say they do need to be involved in this discussion is significant: to date this has not been encouraged, so this survey is a welcome start. A minority of respondents, 22%, agree that physician-assisted suicide should be part of palliative care, but their patients DO ask for it. Of the 250 respondents with patients currently receiving palliative care, 59% of the patients requested physician-assisted suicide—some as many as 11 or more times.
Some of the survey questions could improve with expansion: for example, a physician may agree they should never break the law, but do they agree with that law?
The qualitative data, as usual, provides rich information. I found it notable that those respondents against including physician-assisted death as part of palliative care comment in really strong, unequivocal tones. As in any communication, this tends to block any discussion with an alternative viewpoint. The impact of Christian beliefs in some settings (notably across Africa) is evident.
I think there could be room for exploring attitudes of respondents beyond palliative care; Lukas Radbruch’s description of two of his cases, one patient with a life-limiting illness and another no longer wanting to live, provides a backdrop to this.1
Perhaps the population targeted for this and other surveys could be more inclusive. In addition to directors and CEOs of palliative care organizations, it is important to have input from staff members, as well as individual hospice or palliative care workers. [Clarification: Most IAHPC members (80%) are individuals.] The culture of an organization will also affect how open staff members can be about this topic, so private, confidential responses need to be sought. [The IAHPC survey was anonymous, but Ms. Hunt notes that the palliative care community is so small in some countries that even a descriptor such as “social worker, Zimbabwe” would likely identify the respondent, and could limit or taint responses.] Similarly, individuals may not work for an organization but are involved with palliative care in other ways, such as in private practice; often, the questions are limited for this experience.
In a note sent before her official comments…
I am not employed by government nor indeed any organization, but am speaking as an independent palliative care social worker. I volunteer on two technical working groups on the Palliative Care Integration project led by the Zimbabwe Ministry of Health and Child Care, in partnership with Island Hospice and Health Care.
I have found it very difficult over the years to even have conversations about this with those in a position of leadership the palliative care community, though many colleagues around the world have told me that that they, too, feel shackled in expressing views different than the official line. The official IAHPC position statement on euthanasia physician-assisted suicide,2 for example, is absolutely on point in an ideal world, and I have no argument with the position that really good palliative care needs to be a priority goal, but in reality, as we know, few countries attain that ideal, which leaves a vacuum as to how to act.
More significantly though, I also believe, from my experience, that even with "perfect" palliative care, there are still individuals who would prefer to choose physician-assisted dying and we are simply not listening to or respecting them. As you can imagine, I am overjoyed that the survey was initiated and feel that, at last, perhaps there can be a voice for a wider range of practitioners, and who knows, perhaps even for patients and families!
References
- Radbruck L. What Is Patient Autonomy and Why Is It Important? IAHPC Newsletter Vol. 22 No. 3, 2021.
- De Lima L, Woodruff R, Pettus K, Downing J, Buitrago R, et al. IAHPC Position Statement on Euthanasia and Physician-Assisted Suicide. J Palliat Med 2017: 20(1): 8-14. DOI: 10.1089/jpm.2016.0290