Palliative Care in Africa

The Lancet

Africa

January 13, 2007
 

In July, 2005, as the Executive Director of the African Palliative Care Association, I was driven with colleagues from the local home-based care outreach programme along dusty roads on the outskirts of a small town in Masaka District, Uganda. Branching off the tarmac main road, we entered a seemingly endless winding red dirt road and followed the path through an extensive banana plantation. Eventually we arrived at our destination: the grass-thatched, mud home of Mary, a slight 7-year-old girl with HIV infection, and her 80-year-old paraplegic, bedridden grandmother. Both were palliative care patients of the home-based care programme and were caring for each other as best as they could. On our arrival, the grandmother greeted us from the dry mud floor on which she lay, while Mary struggled with a blanket with which to cover her ailing relative; neither of them had eaten for the past 3 days.

I wondered how Mary and her grandmother had been identified by local services given their isolated location. The nurse that accompanied me told me that they had been discovered by a business man who had stumbled across them accidentally while visiting the area to purchase bananas; it was only the grandmother's cough that alerted him to the fact that the ramshackle-looking house was occupied. However, despite his promise to help them, it was another 3 months before Mary and her grandmother were rediscovered by someone who knew of a home-based care programme that might be able to help them.

Our visit was the second to Mary's home to find out how they were progressing 4 months after they were found. The nurse talked to us at length about Mary and other patients in the district who were not being reached by the services they so desperately needed. The story of Mary and her grandmother, despite appearances to the contrary, was in fact an uplifting one: at least they were in contact with services and receiving care and support. The nurse started her assessments, gave Mary her medication, examined the grandmother's bedsores, administered pain killers, and left a supply of medication sufficient to last until the next planned visit. We also gave them the food we had brought. Mary smiled in gratitude. It was a difficult emotional encounter for all involved; I felt uncomfortable, a clumsy intruder into someone else's personal tragedy.

As we left the home and returned to our car, the smiles of the two confirmed that we had made a difference, no matter how small it seemed. The car moved away as Mary waved to us. The journey through the surrounding local village was largely conducted in silence. The extent of the human devastation caused by HIV/AIDS became apparent to me in tangible terms when I realised that what I thought were the small ant hills so characteristic of the area, were in fact the graves of Mary's immediate family and surrounding villagers.

I reflected on the role of the nurse that cares for Mary and so many like her who need palliative care in the district. She is one among many front-line palliative care pioneers in Uganda and across Africa struggling against adversity and with limited resources to provide care for those in need. This heroism in the face of overwhelming odds has largely gone unreported until now, with the publication of Michael Wright and David Clark's comprehensive Hospice and Palliative Care in Africa. The book includes interviews with palliative care experts from 26 African countries whose comments highlight the complexity of developing and delivering palliative care across Africa. The authors give a precise chronological order of palliative care development in key African countries, not only providing information on the status of current services, but also outlining benchmark information against which future development of palliative care programmes can be assessed. One of the most impressive features of the book is the in-depth review of oral literature gathered from personal interviews with many pioneers and supporters of palliative care throughout Africa. These accounts offer invaluable insights into the motivation that underpins the work of those who care for vulnerable members of our community, people like Mary and her grandmother. Wright and Clark also explore how different countries are addressing WHO's palliative care foundation measures and the challenges they are facing in this respect: from the consumption of opioids, to educational training, service provision, and government support. They outline the diverse factors that make palliative care possible and the issues that are currently impeding attempts to scale-up and implement such care.

The personal histories in the book constitute an engaging read, not only by divulging how people have turned personal tragedies into hope, but also by showing a courage, determination, and passion for palliative care among all those interviewed. Individuals already involved in palliative care will reconnect with familiar palliative care champions; those who are not will be introduced to people whose commitment, vision, and tireless endeavours will inspire them.

Wright and Clark's compelling book is a much-needed addition to the largely neglected area of palliative care research in Africa. It provides a thorough background in current challenges and opportunities for key stakeholders, including service providers, researchers, and donors among many others. Let us hope that the next review of palliative care across Africa will show an increased accessibility for care, and that people like Mary and her grandmother will no longer have to wait for the good fortune of a stranger stumbling across them to receive the care they need.