Trends in Palliative Care Research 2023; Special Edition 05

Commentary By:

Kyle Sue-Milne, Assistant Professor, Division of IHOPE / Division of Developmental Pediatrics, Department of Pediatrics, Stollery Children’s Hospital – University of Alberta, Canada – Pediatric Palliative Care / Developmental Pediatric Physician, Program Director for Pediatric Palliative Care fellowship at University of Alberta. Also, Rural General Practitioner in Northwest Territories, and previously, Nunavut.

Feature Article

Abayneh, M., Rent, S., Ubuane, P. O., Carter, B. S., Deribessa, S. J., Kassa, B. B., Tekleab, A. M., & Kukora, S. K. (2023). Perinatal palliative care in sub-Saharan Africa: Recommendations for practice, future research, and guideline development. Front Pediatr, 11, 1217209.


In the narrative review conducted by Abayneh et al to compare perinatal palliative care in high-income countries (HIC) and low-and-middle-income countries (LMIC) in sub-Saharan Africa, sobering details of inequities are described.
Sub-Saharan Africa accounts for 43% of the global burden of neonatal mortality (27 deaths per 1000 live births). LMIC as a whole account for 99% of over 1 million worldwide neonatal deaths annually (Becker et al, 2023). Applying recommendations from HIC to LMIC is challenging, as LMIC experience much more difficulty in availability of trained professionals, equipment and supplies, medications for symptoms, healthcare access, and even having adequate space within healthcare settings. Patient loads are often overwhelmingly high, and culturally appropriate evidence-based approaches are sparse.
Nevertheless, by examining elements of high quality perinatal palliative care in HIC, the authors were able to identify practical recommendations achievable in low resource settings. For example, “efforts can be made to personalize the end-of-life experience for parents and families” regardless of setting.  This may include asking about religious or cultural practices, and engaging local religious and traditional leaders if desired. The authors point to a Nigerian study where only half of women experiencing stillbirth were allowed to see their infant’s body, with none of them given the opportunity to hold their infant despite many wanting to.
Utilizing a palliative care approach means giving families choices based on their own values and perspectives, not assuming paternalistically. As per the WHO (2020), palliative care is an approach “paying attention to the specific needs and preferences of individuals” that addresses quality of life and suffering, beyond just physical symptoms. Giving bereaved mothers the opportunity to hold their infant does not take any resources to do. Likewise, the authors noted that families can avail of friends, neighbours, and community members to provide support through grief. Support may be as simple as bringing food, offering prayers, or keeping the bereaved company.
Indeed, this reflects my experiences working in remote, resource-limited settings within Canada, despite being an HIC. Let’s take Nunavut. It has a population of about 40,000 people spread over 2 million square kilometres, all in fly-in communities without road access. Due to having only 1 hospital, most communities are instead served by nursing stations. Nursing stations are outpatient facilities where as few as 1 Registered Nurse is responsible for their entire community’s healthcare needs 24/7, with support from distant physicians by satellite phone. There are limited equipment and supplies. They cannot mechanically ventilate or dialyze. Immediate-release morphine is the only opioid readily available.  Nevertheless, most patients would choose to have comfort-focused care at home, availing of support from family, friends, neighbours, and other community members, rather than be flown by themselves to a faraway hospital or hospice. For perspective, it is just under 3500km by plane between Grise Fiord and its referral hospital in Ottawa.
On the surface, providing palliative care with individualized approaches seems simple. Why then, is it lacking in so many LMIC? In several of the other papers in this month’s list (Becker et al, 2023; Chasweka et al, 2023; Garcia-Quintero, et al, 2023; Kenneson et al, 2023; McNeil, Ehrlich, Wang, et al, 2023; McNeil, Ehrlich, Yakimkova, et al, 2023; Muckaden et al, 2022; Vassileva et al, 2023; Watch et al, 2023; Yantzi et al, 2023), a common theme was the lack of training of such palliative care principles. In many LMIC, patient and family autonomy are undervalued, and “doctor-patient relationships are hierarchical” with medical choices “unilaterally made by physicians” (Vassileva et al, 2023). There may also be overreliance and over-rigidity following guidelines that are not individualized (Yantzi et al, 2023). Further exacerbating the problem are the rampant misconceptions about what palliative care means (Garcia-Quintero et al, 2023; McNeil, Ehrlich, Wang, et al, 2023; McNeil, Ehrlich, Yakimkova, et al, 2023; Yantzi et al, 2023). Palliative care does not mean “giving up” or necessarily “stopping all interventions”. It does not only refer to end-of-life.
More resources are certainly helpful, but they do not change the basic concept underlying palliative care: an individualized approach that can benefit throughout illness trajectories. Therefore, starting with education and knowledge translation is key. I commend EPEC (McNeil, Ehrlich, Yakimkova, et al, 2023) and other groups (Palat et al, 2023) for trying to tackle this enormous barrier.

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