One major role of Palliative care Specialist is to respond to management of complex cases of severe pain and other symptoms, sometimes in difficult to access locations. This story is from Vicky Opia, coordinator of Peace Hospice Adjumani and a Palliative Care Nurse specialist.
Usually, doctors and nurses who face challenges in the management of difficult and complicated pain, call for support of a specialist. In June 2020, a doctor met a child diagnosed with Esarcoma who was in agony of pain. We did not only initiated him on Morphine, but also discussed the importance of surgery to avoid metastasis. Two days later, the boy’s right limb was amputated after his consent was sought.
John (not his real name) is the 3rd born among 5 siblings. At 4 years, his parents separated and he grow up with his grandmother. John's father derived his livelihood from fishing to support the family and his grandmother did the house chores. John said, ‘’My dream while in primary 2 to become a doctor came to pass when I succumbed to cancer. I experienced painless swelling at the right lower limb from 2018 which stopped me from playing and I discontinued schooling in Primary 2. I was taken for treatment at local herbalists (painful cutting with razor and massaging) and also medical care from Obongi Health Centre IV in vain." The family of seven lives in a small dwelling house and derived their livelihood from fishing and sale of labour to buy basic necessities for daily survival.
Obongi District was separated from Moyo in 2019 to bring services nearer to the community. It is 35 km from Adjumani district including 2 km across the River Nile. It has 14 health centers and 1 hospital where none of the health workers have benefited from any palliative care training. Hence they lack knowledge and skills in management of palliative care cases making them find their way to Adjumani district for services.
John and family live in a village 10 kms away from Obongi town, thus coming for review requires them to cover 45 kms in 4 hours due to ferry cross over time. Besides, the current heavy runs have flooded the roads and the river banks hence blocking access for services. The available means for transport is the local canoe.
One day, I got a call in a middle of a meeting, when I picked, it was John calling me using his father’s phone. He explained, I am in severe pain and my father cannot raise any penny to transport me for review. Immediately, I reflected on his background, my heart lept with pain and passion having known how bad and risky the road is, and particularly the pain associated with the amputation, I knelt down and prayed. The prayers empowered me and I even forgot that this river has crocodiles, and other wild reptiles. I only recalled his voice saying, ‘’Sr. Vicky am in pain……… in pain.,,, and my morphine is finished’’, Dad has gone fishing, grand mum cannot manage to carry me up to Adjumani ,please help me’’ My passion for humanity beyond self-gain, and own life disappeared. I waded in the River to save John from Severe pain. While there, 3 other patients benefitted from our services.