In October 2015, the World Health Organization Eastern Mediterranean Region (WHO EMRO) organised the third ’Train the Trainers‘ workshop about palliative care. As a special adviser to the WHO EMRO, Professor Sheila Payne met leaders in palliative care from the region and invited them to contribute to this special series on palliative care in North Africa and the Middle East.
Opening the series is Dr Nahla Gafer of the Palliative Care Unit at the Radiation and Isotope Center in Khartoum (RICK) in Sudan, in North East Africa.
Ten years into the management of cancer patients and I have never felt so confident and useful to my patients as I have since training in palliative care.
Thanks to Hospice Africa Uganda (HAU), namely Dr Anne Merriman, and my friend Esther Walker, a small palliative care unit has opened at the main oncology centre in Sudan serving a population of more than 25 million people, most of whom live outside the province and present with advanced-stage disease. Having a nine-bed palliative care unit, which also offers a daily outpatient service and weekly home care visits, has dramatically changed the lives of more than 2,000 patients treated in that unit.
I remember Hag Ibrahim, an elderly man from the far west of the country. He spent the last six months of his life travelling around seeking medical care, ignorant of his bad prognosis of hepatocellular carcinoma. I finally persuaded his sons that their father should be told what was happening and they allowed me to tell him. I explained the disease in simple words mentioning its incurability. His reaction was unforgettable. He said, “Thank you, doctor. I have lived enough (80 years). Let’s go boys, we have nothing to keep us in Khartoum.” We discharged him the next day with a follow-up plan. We later heard that he was able to finalize the wedding of his daughters before he died at home.
Our first patient, Rabaa, was an example of how palliative care enabled a breast cancer patient to resume chemotherapy. She was a 40-year-old lady referred because she was “not responding to further chemotherapy”. Her lung metastasis made her breathless. Her last chemotherapy treatment had caused an oral and oesophageal candidiasis. So you can image a lady lying wasted on the bed, breathless, in pain, not eating, and vomiting for several days. After medication (the first time we had used morphine at RICK for breathlessness management), the patient revived in a few days. Back to chemotherapy, and her chest X-ray showed marked regression of her disease. Our relationship with this patient lasted a long time: we gave support and education to the family, and counselling to the husband who told us earlier that he wanted to remarry another woman. Rabaa died a couple of years later but the outcomes were great for us all, for Rabaa and her husband.
An oncology registrar whom I met at the Kuwait workshop, said, “The effect of providing palliative care is priceless.” Yes, how can you measure the price of tranquillity, the price of those last months and days of life? If the patient and family were not slowly introduced to this reality, they would lose those important months running after futile treatment.
A nurse colleague, Halima, who was also fighting for palliative care in another city, was once criticised by colleagues. “Palliative Care, Palliative Care, you gave us a headache without seeing its effects.” Halima calmly replied, “Do you remember the crying patients and the offensive smells from the wards, some time ago. Where are they?” Yes, palliative care changes hospitals dramatically, to the degree you never imagined them before. Her colleagues admitted that she was right.
The fight to have a service is never-ending. But it’s gratifying when you hear patients from the oncology unit say: “When can I come down [to the palliative care unit]?”, or when doctors from outside the hospitals refer patients directly from surgery to palliative care. Even when a co-worker falls in the hospital, they take him to the palliative care unit! And our nurses – after four months of working with us, soaking up the ethos of ‘patient comes first’, ’continuity of care‘, a ‘holistic approach in assessment and management’, and ’hands-on-care‘ – are called ‘doctors’ by the patients. What more recognition is needed?
No incentives from the hospital for extraordinary work, no job promotion after several years of good service and training overseas (in this way I lost a couple of my team members). But those who stay, I know, find job satisfaction in changing the lives of the patients they see, in making a difference in this reality of poverty and disorder.
Read more about palliative care in Sudan here.
Coming up in the North Africa and Middle East series: Dr Samy Alsirafy, Professor of Clinical Oncology at the Palliative Medicine Unit, Cairo, writes about his experiences in Egypt next week on the EAPC Blog.