Neonatal Palliative Care in Low-Resource Humanitarian Settings

Categories: Care, Community Engagement, and Featured.

Photo credit: Rohingya refugee camp. Block D5, Kutupalong extension camp, Cox’s Bazar, Bangladesh 2 July 2018. Photo: Tanvir Murad Topu / World Bank

“Neonatal Palliative Care in Low-Resource Humanitarian Settings – Engaging mentoring session reaching a global audience of Humanitarian Health Care Workers.”

A recent CME session took place in collaboration with Fasiuddin Khan Research Foundation (FKRF), Palliative Care in Humanitarian Aid Situations and Emergencies (PallCHASE) and Two Worlds Cancer Collaboration. This learning session was part of a larger virtual training program that supports Humanitarian Health Care Workers providing palliative care for individuals with serious or incurable illnesses in the Rohingya Refugee Crisis in Bangladesh.

Since 2020, these organizations have been running an online introductory palliative care course for humanitarian health workers in Bangladesh. This course consists of 11 weekly sessions which introduce participants to key topics in Palliative Care. In addition to the course, there are monthly CME Sessions which welcome current and previous course participants, as well as any other health care providers who are interested.

The most recent CME session focused on Neonatal Palliative Care in Humanitarian Settings with an engaging case-based discussion led by Rachel Yantzi, former Nurse Manager at MSF Goyalmara Hospital in Bangladesh. The case focused on an extremely premature baby who was born weighing less than 1kg. Given the resource limitations in the setting, the neonatal care team developed a care plan which focused on providing palliative and supportive care for the baby. Rachel went on to share the ethical dilemmas the health care team discussed at the time and described how to provide compassionate comfort-focussed care for a neonate in this type of situation, where intensive treatment options are not available.

Many comments came through the chat from participants from around the world, working in similar settings asking further questions about the use of oxygen, intubation, IV fluids, and referral to other centres with more resources. As a group, with the input of Palliative Care experts on the call, the recommended goals of care for extremely low birth weight and premature neonates in low-resource humanitarian settings were discussed.

Experts shared experiences and statistics related to survival rates in these situations, which demonstrated the value of focussing on palliative care for baby who are extremely premature or low birthweight. A palliative care approach includes focusing on the physical, psychosocial, emotional and spiritual needs of the baby and their family or caregivers. Participants and experts observed that nearly all neonates between 1.0 to 1.25 kg do not survive even with all of our efforts at intensive care, leading participants to understand the importance focusing on palliative care for neonates < 1kg.

Experts discussed not engaging in aggressive resuscitation measures and treatments from the beginning, because these measures do not change the outcome for the baby. Participants recognized the importance of open discussion among team members to ensure that all team members feel comfortable with the plan of care and ensure that their questions about whether palliative care is ethical care for these babies is addressed.

The session then moved on to a didactic lecture led by Dr. Megan Doherty and Professor Julia Downing. The didactic lectures focused on symptom management of neonates under 1kg including kangaroo care, comfort feeding with small amounts of breastmilk, and the use of sucrose and other measures to treat pain. Topics of psychosocial support, emotional care for parents and families as well as how to care for siblings were also included in the lecture.

During the final discussion time, a participant asked:

– How will we handle bereavement for the siblings of the neonates?

– How do I handle ethical issues surrounding not performing some interventions like CPR?

– How do I handle professional decision making when health care workers are junior and lack the experience to make the decision to adopt a palliative care approach?

– How can I develop a palliative care plan and should I include parents in decision making?

-How do I handle the situation when parents insist on invasive or advanced procedures, which, in my experience will not make a difference or improve the child’s clinical condition?

The Pediatric Palliative Care experts shared their knowledge and experience, and participants were grateful for the support and many noted that they felt more empowered in their own work settings to implement a Palliative Care approach. As a global community, we will continue to support Humanitarian Health Care Workers in adopting a holistic Palliative Care in the support and care they give to their patients and families.

If you are interested in learning more about the program, please the program coordinator at or check out the PallCHASE website for more information and future courses being offered.

This article was republished on ehospice with permission from the authors.

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