The office for the palliative care unit at Arua Hospital is tucked away — almost ironically — in a ward dedicated to the prevention of mother-to-child transmission of HIV.
Palliative care nurses must go past a lineup of young mothers weighing and measuring their newborns as they head to other wards to visit their patients, many of whom have terminal illnesses.
A desk, table, three chairs and storage cabinet overwhelms the small office that is less than two metres wide. It is a tight squeeze when the three members of the team, and two student nurses, meet in the space — but they are glad to have it.
The space at Arua Hospital helps the palliative care team keep track of all their patients — and there are many of them. On average, the unit receives between 110 and 120 patients in a month. About 15 to 20 new patients are referred to the unit every month.
Lucy Agaboru is the head of the palliative care unit at Arua Regional Referral Hospital. It is a role she says she would not have necessarily advocated for without the support she received from other palliative care practitioners early in her career.
Agaboru first received formal training in palliative care in 2000. That was followed up with mentorship by staff from Hospice Africa Uganda and the Palliative Care Association of Uganda (PCAU).
At 56 years of age, she is thinking about retiring. Dedicated her work, however, she would like to accomplish more.
With many patients requiring palliative care continuously visiting the hospital, she recognises the need to establish an independent hospice. Agaboru has already planned and named a centre — New Life Hospice Arua — but the lack of funding has prevented her from leasing a building or hiring staff.
“At times we get overwhelmed with new patients being referred to palliative care,” Agaboru says, adding, “even the doctors consult us.”
Patient care does not end with the workday. Agaboru says she regularly calls patients in the evening and at the weekend to ensure they remain comfortable. Patients also frequently call her with a myriad of questions about their condition.
However, the volume of work hasn’t tired Agaboru of the job.
“That support you give to the caregivers, the encouragement you give to the patient and then the result you see from the patient just keeps encouraging you to do more,” she says.
For Agaboru, doing more comes in the form of mentorship. She continues to mentor palliative care nurses in neighbouring districts including Nebbi, Adjumani and Yumbe. In Yumbe, she helped convince a clinic to allow their overnight nurse to pursue full-time palliative care instead.
Regardless of whether New Life Hospice Arua is established, Agaboru says she will not leave the hospital until she has a replacement trained and confident in the job. And retirement for Agaboru will not mean leaving palliative care behind entirely.
“I would continue with the mentoring,” she says.
There were no health workers dedicated to palliative care in the West Nile region when Lucy Agaboru first learned of the treatment over 15 years ago — but that has since changed dramatically.
Yet despite the success Agaboru has seen, there are still many challenges in providing palliative care in her district.
Until recently, the team at Arua Referral Hopsital was comprised of four dedicated nurses. However, one recently died and another is set to retire at the end of the month.
“They kept calling me, and that meant that they know I am the person that can develop palliative care here. The thank you from them encouraged me,” she shares.
There are still 22 districts in the country that lack palliative care services, according to the Palliative Care Association of Uganda (PCAU).
However, if PCAU’s vision for mentorship goes as planned, the cascade will continue and those health care workers Agaboru supported to learn palliative care, will one day become mentors themselves.
Grooming health care trainers
Mentorship has become integral to increasing the number of health workers who provide palliative care.
Although a number of training programmes exist, including short courses and longer diploma programmes, there is no guarantee nurses will implement their new knowledge when they return to their regular posts.
“Because when you learn something, when you go back to implement, it is
new, the other people might not accept it. But also, you might not have the confidence to do it,” says Rose Kiwanuka, country director for the Palliative Care Association of Uganda (PCAU).
Mentorship mitigates these challenges in a number of ways. A mentor can provide encouragement and suggest tactics for responding to fellow staff who may not understand the purpose of palliative care. A mentor can also intervene by talking to hospital or clinic administrators to channel more resources to palliative care.
For a newly trained palliative care nurse, a mentor provides reason to continue practising, answers questions and validates progress and good work.
With time and experience, the practitioner who received mentorship can mentor other health workers. This transition from receiving mentorship to being a mentor will help spread the practice of palliative care.
Since training and follow-up are costly, this model of mentorship is becoming a necessity. “When we train you, we mentor you, we expect you to go and mentor the people at the other health facilities in your district because we cannot continue following up these people,” Kiwanuka says.
“We need that cascading effect.”
Palliative care: a key health service
Palliative care improves the quality of life for people who have a life-limiting illness such as AIDS, cancer or diabetes, according to the World Health Organisation.
Treatment considers both psychological and physical ailments — such as stress or pain — and can begin as soon as
a person is diagnosed. Treatment can include prevention of additional
illnesses, pain management with medications such as oral morphine, and
mental or spiritual counselling.
Palliative care is not exclusively for people with terminal illnesses, but for anyone with an illness that causes severe pain. For those with terminal illnesses, palliative care does not hasten or postpone death.
The number of patients requiring palliative care is huge.
There are thousands of Ugandans living with terminal illnesses suchas HIV/Aids and cancer and a growing number of people living with chronic illnesses that can be painful and life-limiting.
There were 693,200 cases of diabetes in 2014, up from 625,050 cases the year before, according to the International Diabetes Federation.
Palliative care ensures people living with these diseases can have a
good quality of life, without pain or psychological or spiritual