Joan Marston, Chief Executive of the International Children’s Palliative Care Network began by giving an overview of some of the challenges surrounding palliative care delivery for children on the continent: “Africa has the greatest gaps but we also have some tremendous programmes and real progress,” said Marston. “Children have special needs that are often different to those for adults,” she explained. “If we want to provide quality palliative care, we need to look at their physical, emotional, social, and spiritual needs. We need to have the knowledge and the skills so we can improve education and practice. Most importantly, how often do we forget to listen what the children say?”
When you talk to children, Marston explained, you find that what’s important to them is joining in with life just as healthy children do. “Children with life-threatening conditions still want to be children,” she said. “They still want to play, to go to school, they want to have boyfriends and girlfriends and dance and sing and do all the things that children want.”
Reflecting on the theme of this year’s World Hospice and Palliative Care day coming up in October, Marston also reminded delegates of the need to dispel myths around palliative care for children, the need to increase our knowledge and the need to be active in reaching children in pain.
Finding the people who can deliver care and making sure they can be trained, supported and sustained, is critical to strengthening palliative health care. This was the theme of the presentation from Malik Jaffer, Deputy Director at IntraHealth, who shared some useful human resources tools that can be used to monitor and grow a workforce.
The crisis of health workers in Africa has been well documented. The continent is only home to 3% of doctors, nurses and midwives but has to cope with 25% of the global disease burden. To help the audience visualise just what that means, Jaffer pointed out that the number of health workers needed would fill the nearby World Cup Soccer stadium sixteen times over.
Support and tools are available for those looking to grow and develop a workforce, he explained. The WHO has social service and health service frameworks that can be used for guidance and just a few months ago, an internationally recognised body formed to bring together the social sector for the first time, the Global Social Service Workforce Alliance. The body hopes to encourage discourse, knowledge sharing and advocacy among the sector.
Helping to bridge technology in the global health divide, IntraHealth has also launched an open source human resource information system (IHRIS) freely available for anyone to use. The platform allows organisations to manage staff, to plan and model a workforce, as well as to track training. “It’s been used in 23 countries,” says Jaffer. “If countries had paid for that platform they would have spent over $100m. It’s available for hospices, associations, and for those wanting to track who is working in palliative care.”
Following Jaffer on stage was Dr Isaac Ezati, a consultant surgeon from Uganda who works with the country’s Ministry of Health. Giving the audience insight into a surgeon’s perspective on palliative care, Dr Ezati explained that surgeons usually prefer to intervene when it’s likely there is a very good outcome. Patients are referred to as ‘cases’ and identified by the type of cancer or disease they have. “It’s a case of breast cancer, of liver cancer,” he said. “Many people practising surgery are not keen on palliative care because they’re thinking about cases.” And if a case is advanced, many surgeons don’t want to be involved.
But palliative surgery can have a big impact on someone’s life, to alleviate pain or in some cases to extend life, he explained. “There is something surgeons can do so a person can return to daily life,” said Dr Ezati. Surgery can palliate some side effects and symptoms of diseases like cancer, for example by clearing internal blockages to allow a patient to eat or removing smelly ulcerated lesions. “Palliative surgery has a significant role in improving the quality of life of a patient with an advanced disease,” Dr Ezati told the audience.
As well as being taught in surgical education, palliative surgery needs to be looked at specifically and fully incorporated into palliative care, he argued. “We need to integrate it properly and we need to create a network of surgeons and engage them to develop guidelines for surgical palliative care in Africa.”
Closing the plenary sessions, Dr Emmanuel Luyirika, Chief Executive of APCA, discussed the role palliative care has to play in prevent communicable and non-communicable diseases. He explained that with care often delivered at home, community palliative health workers have the opportunity to talk to not only the patient but also their families about potential risks to health and available services.
“Palliative care is an opportunity for the family to interact with a health worker. It’s for the patient and their family,” said Dr Luriyika. “We have opportunities others don’t because we spend time with patients. We need to identify family members at risk.” Recognising young girls who could be immunised against HPV was one example of how care workers could potentially help protect people from further health burdens.
They can also prevent symptoms of pain, provide access to safe water and sanitation, and help prevent the onset of non-communicable diseases by discussing lifestyle habits with families. “As a way forward, palliative care providers need to seek prevention opportunities,” he said. “We need to think of research that would inform better prevention services in palliative care environments.”