Between 30 March and 24 April 2015, I had the pleasure of joining the Umodzi paediatric palliative care team in the Queen Elizabeth Central Hospital (QECH), Blantyre, Malawi, under the Palliative Care Support Trust (PCST).
It has been a wonderful journey in the Malawian palliative care service. In these four weeks, the enthusiastic Umodzi team has adopted me as their team member and showed me all the facets of their work. Because of their holistic approach, I was able not only to see the medical (physical) side, but also the psychological, emotional and spiritual part of providing paediatric palliative care.
At Umodzi palliative care, relief from pain and suffering in every child is their back-bone dream. The Umodzi team provides adequate pain medication (e.g.: Liquid Morphine, Paracetamol, Brufen) and several other medications for common complaints for those in need. Apart from symptom management, Umodzi team spend a lot of time on counselling.
Caring for children and their families in Malawi
In contrast to the situation in my home country, the Netherlands, most parents in Malawi have little or no knowledge at all about the illness of their children. Communication between medical staff and sick children or their parents is minimal due to pressure of work for few health workers in an ever increasing disease burden area.
It is this gap that the Umodzi team fills. They take quality time to answer questions about the curability and the cause of the disease. It is amazing how people believe in witchcraft as source of disease even in obvious diseases with well known pathological patterns.
It is left to Umodzi team to help such parents with such beliefs, in a respectful manner, to understand the disease well. With much empathy, and yet truthfully, they share prognostic projections of many diagnoses to the understanding of the parents. It can only take bravery to deal with such realities. Yet, this for Umodzi is a common occurrence.
Their holistic approach means also paying attention to the social needs of children and their parents.
In Malawi, and maybe in developing countries in general, having a sick child is made even more difficult due to poverty. One aspect of this is that people have to travel a long distances to come to the hospital; sometimes on foot.
Spending weeks in the hospital, being away from their families and environment, means an expensive and emotional time for children and their parents. It was heartwarming to see that Umodzi could support parents with a block of soap, or a little financial support, and the children with toys or sometimes a decent meal.
The work of Umodzi does not end with the discharge or, even worse, the death of a child. Umodzi goes beyond the call of duty in caring.
In the case I witnessed, a grandmother had nowhere else to look for support after the death of her grandchild in the hospital. She was coming from a distance of at least 200KM from QECH. She could not afford transport to carry the body back home for burial. The Umodzi team assisted by arranging decent transport for the needy family.
Organising care and overcoming challenges
In case of discharge, every palliative care file is kept in well organized maps sorted per district and region.
Every week one person of the Umodzi team visits the home of these children in one district. This is definitely not an easy job. I was privileged to accompany Beatrice, the palliative care nurse at Umodzi and a humble team leader of the group in the home visit in Phalombe and Mulanje.
Umodzi team have to cope with several challenges and difficulties. Starting from traveling long distances to very small villages on roads that are not very suitable for cars. In some cases we saw that the name of roads had been washed away by the recent floods.
They also are often faced with disappointment due to families who have moved without notice, children who have died at home and also difficulties of finding the house of the child due to confusing set up of communities and villages.
Does Umodzi back down to all these hassles and disappointments? Not at all! They move on to the next village and next house to the next child! What a giving spirit I have seen!
A warm welcome
Comforting as it may sound, from the children and families we were able to find, we received a warm welcome.
During these house visits, we could help children with (pain) medication or give advice about a probable relapse. Also it was good to see that some of these children were cured and therefore could play and go to school in good health and quality of life.
How does Umodzi team manage to keep well and go on amidst these problems? I noted one thing: besides their extended training program in palliative care, it is all about ‘caring and sharing’.
By sharing sad and happy moments but also sharing food and laughs, they take care and look after each other’s hearts. Because having a warm heart is very important for caring for our vulnerable ones. They are always filled with smiles!
Thanks to Dr Cornelius Huwa, Medical Director, and the PCST management for allowing me to experience this life-changing life away from home.
You became my family when I needed one. You provided guidance when I looked for it. Your hearts have taught me what I could not learn any other way even in the best of books. Thank you for all you do to help broken and suffering families!
Laura van Lersel is a final year medical student at the University of Amsterdam, The Netherlands. She joined the Palliative Care Support Trust as part of an elective placement.
Find out more about PCST online.