Original article can be found here: https://www.pallchase.org/my-journey-in-paediatric-palliative-care/
I first met Fatumata* when she was 7 months pregnant with baby Serifo*. At the time, I was working as a paediatrician with Médecins sans Frontières in Guinea-Bissau.
Guinea-Bissau has been politically unstable since independence in 1974. There are high levels of poverty, and nearly 70 % of people live below the poverty line. Infant and maternal mortality rates are high, and health care as well as water and sanitation services are limited, particularly outside of urban areas.
Fatumata’s pregnancy had been without trouble up to that point. In a place where specialist medical care was beyond the reach of most, Fatumata had worked hard and managed to save money to be able to afford an ultrasound at a private clinic in the capital city. The scan had been normal.
But things quickly changed in the week leading up to our meeting. Fatumata was diagnosed with eclampsia- her blood pressure was dangerously high, and she was about to have an emergency Caesarean section. When Serifo was born, she struggled to breathe. We immediately started support with oxygen, antibiotics, and other treatments. She was admitted to the neonatal intensive care unit for continued treatment.
Over several days, the pediatric team determined that Serifo had a rare genetic condition- called campomelic dysplasia. This affected her bones and cartilage and sadly, was a life-limiting condition. The team did not expect that Serifo would live very long, since most babies with this condition die in infancy.
As the pediatrician in charge of neonatal intensive care unit, I had to meet with the family to share the diagnosis with them. I was nervous because I did not know how the family would react to this difficult news. I worried that they would blame our team for the illness. During the meeting, which involved translation of Fatumata’s words, I did not need translation to feel her anger. I felt helpless, not knowing what to do or what to say, since I had not been trained for how to manage these types of difficult conversations.
After the meeting, I felt a sense of guilt and helplessness which lasted for many weeks. I held myself responsible for the situation. I realized after a few weeks, how receiving the news of Serifo’s diagnosis had triggered emotional reactions for the family and also the emotional impact this had on me.
Several months later, I was able to attend a one-month clinical pediatric palliative care (PPC) training program in Hyderabad, India which allowed me to see what I could have done differently. During the course, I learned and practiced techniques for sharing difficult news compassionately and empathetically with families.
During my PPC training in Hyderabad, India
I learned how to use the SPIKES model to structure these types of difficult meetings. By observing experienced palliative care clinicians, I came to realize that an important component of the meeting is to give information based on what the family needs, letting them ask questions and determining what they already know.
Now, when I think of baby Serifo, I feel empowered and equipped to manage better situations of patients and families facing the diagnosis of a serious or life-limiting condition. I know that I do not have all the answers but believe I am better able to support and respond to the emotional needs of those suffering. I am also using my knowledge to train and equip nurses, social workers, and other doctors where I work. I believe that we can work together to improve the support we offer to children with life-limiting conditions and their families.
PallCHASE is working to develop and increase access to palliative care training opportunities for humanitarian health care providers working in fragile, conflict-affected and vulnerable settings, so that more pediatric clinicians like Dr. Luraschi can be empowered to provide palliative care for children with life-limiting conditions and their families. We have recently partnered with Fasiuddin Khan Research Foundation and Two Worlds Cancer Collaboration to conduct Project ECHO training programs for healthcare providers caring for individuals with serious illnesses in the Rohingya Refugee Camps in Bangladesh. You can ready about these efforts here and on the PallCHASE Blog.