By Nahla Gafer, MD, IAHPC Board Member; and
Head of the Palliative Care Unit, Khartoum Oncology Hospital, Sudan
Ten years into oncology and another 10 years integrating palliative care into oncology, I couldn’t be prouder of the Palliative Care Unit at Khartoum. More than 5,000 new cases present yearly at Khartoum Oncology Hospital (KOH) with advanced stage disease and a high symptom burden (60%). Yes, I am so proud of the team members who do not hesitate a minute in dealing with the social, psychological, and huge symptom burdens experienced by our patients.
That was what Dr. Jackline Edward and Sister Mahasin did when confronted with Khadiga, a 42-year-old woman from Nyala, in the far western part of Sudan. Long distances, lack of services, fear of the disease, illiteracy, and poor financial support led to her presenting with a huge mass extending all over her chest, and axillae—a mass filled with pus and dead tissue. She was dyspneic, and really hurting. Suffering was written on her pale, thin face. I watched as our two caregivers took the initiative to calm and comfort the patient. They immediately gave her morphine for the pain, and took to dressing her wound.
Caring for Khadiga extended to explaining the disease to her family, showing them how to dress the wound, and describing the phases of management. After two weeks of supportive care, Khadega was prescribed single-agent chemotherapy. Later, when she became stronger, a full dose of TEC (taxotere-epirubicin-cyclophosphamide) was given. She was cared for on the ward for some months, but insisted on coming to the clinic several times to greet us, thank us, and meet the whole staff.
We thank the hospital administration for allowing us to see patients referred both from within the hospital and from outside the hospital. We follow IAHPC’s definition of palliative care, providing services to oncology patients whenever there is suffering or need (especially psychological and physical issues), whatever the stage of the disease, and whatever the prognosis.
As for the care of our end-of-life patients, in addition to a nine-bed inpatient ward, we are commencing with at-home hospice care by PCU team members in October 2021.
That is possible through a special memorandum of understanding with SANAD, the Lebanese Home Palliative Care Association. SANAD managed to bring the hospital administration on board for the provision of home palliative care. This wonderful 18-month program began with a needs assessment in April 2021, when SANAD interviewed (remotely) our general director, medical officer, head of nursing services, quality assurance officer, a pair of oncologists, and PCU members. After drafting the course, remote training began, followed by in-person training in Lebanon, accompanied by SANAD team members.
Here are a few of their comments following the four weeks of training in Lebanon:
Aisha: I learned to deal with all issues, not only the physical. I am now confident in the management of social, psychological, and spiritual issues.
Mahasin: I learned how to use the Palliative Performance Scale and how to manage the symptoms meticulously for terminal patients.
Tarig: I witnessed advanced psychological interventions of patients and family members.
Hassan: I learned how to help the carer in administering medications and fluids subcutaneously during the last days of life.
Nahla: Now I have witnessed how patients die at home and in peace, and know it is possible in Sudan.
Wafa: We are now ready to provide a good, organized, high quality and holistic home care service in Sudan.
SANAD will continue supporting us with the logistics of running the at-home hospice service, as well as supervising it for the coming six months. This experience clearly demonstrates collaboration and solidarity, even in the midst of a failing economy, lack of fuel, and electricity cuts. We thank SANAD again for sharing their skills, and for the high-level instruction that they are providing.
And yet, in Sudan there still is a need to make oral morphine available in the general hospitals; train doctors, nurses, and pharmacists on how to use it; recognize palliative care as a medical and nursing specialty; include it in the national health insurance coverage; and have an office at the Ministry of Health to facilitate training and service provision at all levels, as well as to coordinate with other ministries.
We know what is possible, and wish to make palliative care available for everyone in need.
To learn more about SANAD, the Lebanese Home Palliative Care Association visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.