An oncologist by training, Dr Gafer became interested in palliative care when she met Esther Walker, a British palliative care specialist nurse who had come as a volunteer to the main oncology centre in Sudan.
Ms Walker gave a series of lectures on oncology nursing at RICK, including four lectures on palliative care.
“I was astonished,” said Dr Gafer, “I thought: What is she going to say in four whole lectures about palliative care? I thought it was too much time. For me, palliative care might be half a lecture.”
Dr Gafer recalled how a walk around the wards with Ms Walker opened her eyes to some basic nursing care that was lacking.
She said: “For example, one of our patients was crying from pain and when we checked we found that she had Tramadol in her bag of drugs, but wasn’t taking it regularly. When we asked her sister why she didn’t give the patient the medication, she replied that she thought that the drug was dangerous and therefore only gave it to the patient when she cried from extreme pain.”
It was this visit that inspired Dr Gafer to further her own education in palliative care. She attended the Hospice Africa Uganda (HAU) Initiator’s Course, with special funding from the International Association of Hospice and Palliative Care (IAHPC).
“I cannot tell you the amount of knowledge I gained there,” said Dr Gafer, “from how to communicate with patients and how to manage symptoms, and even the idea of home care. When Esther was talking about this in Sudan, I was seeing this as something very unrealistic. I thought: ‘How can the doctor and nurse go to the patient in their homes?’ That was impossible! So it was a really a good opportunity for me to see everything in practice at HAU!”
A number of international specialists have visited the palliative care unit at RICK. Among these were Dr Anne Merriman, director of Hospice Africa Uganda, and Dr Mhoira Leng, head of palliative care at Makerere University & Mulago Hospital in Uganda. Dr Leng provided valuable advice that transformed the way that pain was managed in the centre.
The centre has started to produce liquid oral morphine from morphine vials. Dr Gafer recalled Mr H, the first patient to receive reconstituted oral morphine: “I remember Mr H, his daughter came and mentioned that her father was facing the wall, depressed and crying from pain. We gave her the liquid oral morphine and titrated it for the coming five days. After two weeks we had he pleasure of meeting Mr H smiling, his pain controlled, and he came to us in person to thank us.”
Recognising the importance of training oncologists in palliative care, HAU helped Dr Gafer to provide training in palliative care for health professionals in March 2010. 32 doctors and nurses from RICK and other organizations have been trained at RICK.
Now the unit has evolved to include the ward as well as a lecture room. The team receives requests from outside the centre who are interested in training in palliative care.
The hospital administration has started to engage with the unit, supporting several training sessions to date.
Dr Gafer noted the importance of demonstrating the good practice of the unit, saying: “In the beginning we were speaking a lot about it. Telling everyone that palliative care is important. Then we found that this is not the way to do it. We need to do the work, to demonstrate its value and then people will come to us.” As an example she cited the increase in requests from registrars interested in training at the unit.
Dr Gafer spoke about the importance of spending time with and listening to patients, saying: “In the palliative care ward, the staff understandthat the patient comes first. They allow the patient to speak and listen as they tell the symptoms.”
There were also issues around continuity of care. At RICK the palliative care team takes the responsibility to follow up with patients. This also emphasised the need for home care.
Dr Gafer said: “When I spoke to the medical officers about home care they did not understand but some of the nurses who had trained at HAU told them: ‘It can be done, I have seen it.’
“One of my oncology colleagues told us: ‘You have changed medical practice in Sudan’.
“After we started our work at the palliative care ward, pain management has changed throughout the hospital.”
The next steps for the palliative care unit are to train doctors and nurses in other hospitals in at least the basics of palliative care and pain management.
They are also looking to expand the team, adding a formally appointed psychologist.
In addition, Dr Gafer is currently assisting to establish a palliative care unit in a secondary hospital in Khartoum (Soba University Hospital), a public hospital and the main referral centre for patients from outside Khartoum.
She said: “There is a nurse there who has been trained in palliative care at HAU, and one doctor who is interested in specialising in palliative medicine. She has been volunteering at our unit for more than one year. She has witnessed first hand the impact of palliative care. We are seeking a distance learning programme for her to do.”
Dr Gafer ended by saying: “I think palliative care is a calling, you cannot force people into it.”
To find out more about palliative care in Sudan, visit http://www.hospiceafricanadventure.co.uk/palliative-care-unit-rick-sudan/