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Cross-cultural palliative care

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Professor Barbara Jack’s passion for research took her to Africa to teach people about good end-of-life care

Dying beneath torrential rain or the blazing African sun isn’t how anybody wants to end their life - especially without painkillers. But Professor Barbara Jack knows scenes like this are common in sub-Saharan Africa.

“One day I was with the palliative care team in Kampala, Uganda. We saw a terminal patient whose testicles had been removed for testicular cancer. The only painkiller he had been given was paracetemol. We were able to give him morphine and a measure of peace,” she says.

Professor Jack conducts crucial NHS palliative research at Edge Hill University and has transferred her expertise to the Hospice Africa charity, which has established end-of-life services and training throughout sub-Saharan Africa. She realised at an early stage in her healthcare career that research projects could be used to improve palliative care across the board.

“I was a ward sister on an acute medical ward in a Liverpool hospital and we had a few patients receiving end-of-life care. It was very clear to see that when a palliative care team was involved with a patient, the patient had a much better death than if they only had traditional medical care,”

she explains.

“I was with a team of nurses when I realised that was the way I could make a change: getting the evidence to be able to inform practice.”

Professor Jack has since been at the forefront of palliative care developments and continues to research ways of improving end-of-life services.

“We have just completed a large project funded by the National Institute for Health Research and the Research for Patient Benefit programme, developing an alert monitor to assess informal carers - to check how they’re coping both psychologically and socially,” she explains.

She has been helping Hospice Africa in developing its care and training programmes since 2006.

“One of Hospice Africa’s two charity shops is in my local village and I got in contact with the founder

Dr Anne Merriman. I didn’t have time to go out there as a volunteer worker but I could offer other skills,” she says.

Professor Jack has applied her research skills to improve the practice of palliative care at Hospice Africa’s flagship Ugandan project.

“There are totally different resources. If you think of what we have here - reliable electricity, running water and such. But one of our main focuses now is educating the workforce in palliative care. It’s an education programme tailored to the needs of Africa but using the good practices from the UK,” she explains.

But the difficulties faced have been cultural as well as practical. Taboos and customs make patients shun modern medicine. Hospice Africa has worked hard to dispel fears of opiates and HIV.

“Many people believe in witchcraft and will go to local healers for help rather than seek medical assistance. They end up coming to the hospice very desperate.

“There is also a huge amount of stigma attached to HIV and Aids. Originally there was a lot of fear but people are being better educated about it now. We also find that the families of the terminally ill can’t cope with the cries of pain - there was one case where they put a dying mother in an outhouse with the animals. We were able to give her morphine and they were able to see the immediate results,” she says.

Professor Jack believes building a fully trained local workforce is key to sustainable palliative care in the region. Last January saw the first graduates complete a three-year palliative care degree.

“They plan to develop more opportunities for staff training in sub-Saharan Africa and to set-up a Masters programme,” she explains.

Professor Jack is immensely proud of Hospice Africa’s work.

“I hope to be able to continue and to increase the amount of work I do for it, especially now that I’m a trustee. Hospice Africa has just celebrated its twentieth anniversary, and it has developed beyond recognition - it no longer soley works in Uganda but has spread across Africa. All in all, it has cared for over 22,000 patients and trained over 8,000 nurses and doctors.”

Paddy Harris

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