Rising to meet the demand for palliative care

In All by Linda Givetash

This story was featured by The Daily Monitor

ARUA, UGANDA — 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.

Ms. Agaboru is now the head of a palliative care unit at Arua Regional Referral Hospital. It’s a role she says she wouldn’t have necessarily advocated for without support she received from other palliative care practitioners early in her career.

Ms. 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).

“They kept on calling me, and then that call meant that they know me and they know I am the person that can develop palliative care here,” she said.

“The thank you from them, ‘Lucy, you are doing good job,’ that encouraged me.”

More than just training

Mentorship has become integral to increasing the number of health care workers who provide palliative care.

Although a number of training programs exist, including short courses and longer diploma programs, 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’s new, the other people might not accept it. But also, you might not have the confidence to do it,” said Rose Kiwanuka, country director for the 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 encourage diverting more resources to palliative care. 

For a newly trained palliative care nurse, a mentor provides reason to continue practicing, answers questions and validates progress and good work.

With time and experience, the practitioner who received mentorship can eventually mentor other health workers. This transition from receiving mentorship to being a mentor will help spread the practice of palliative care.

Because 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 can’t continue following up these people,” Ms. Kiwanuka said.

“We need that cascading effect.”

Lucy Agaboru (behind) and Rebecca Draleru specialize in palliative care because they believe all patients in severe pain need medication and support.

Growing demand for care

That is because the number of patients requiring of palliative care is huge.

There are thousands of Ugandans living with terminal illnesses like HIV/Aids and cancer. UNAIDS estimates that 33,000 people died due to Aids in 2014. Another 21,500 people died as a result of cancer, according to GloboCan, an international agency for cancer research.

Palliative care is not only for people with terminal illnesses. There are a growing number of Ugandans 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 stress.

But dedicating health care workers exclusively to providing palliative care is a hard sell at many clinics and hospitals that are understaffed.

Ms. Agaboru has experienced the challenge of balancing palliative care with other duties. She was among eight nurses who were initially trained in palliative care at Arua Hospital of which only four continued to practice palliative care after the fact.

“The rest were taken up by other duties,” she explained.

Although their numbers dwindled, support from the PCAU encouraged the group of nurses to push the hospital to develop a palliative care department. They were successful and the unit opened in 2003.

Making a difference

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 pass by 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 meters wide. It’s a tight squeeze when the three members of the team, and two student nurses, meet in the space — but they’re glad to have it.

There are still 22 districts in the country that lack palliative care services, according to PCAU.

The space at Arua Hospital helps the palliative care team keep record of all their patients — and there are many of them. On average, the unit can see between 110 and 120 patients in a month. About 15 to 20 new patients are referred to the unit every month.

“At times we get overwhelmed with new patients being referred to palliative care,” Ms. Agaboru said. “And even the doctors, they consult us.”

Patient care doesn’t end with the workday. Ms. Agaboru said she regularly calls patients on evenings and weekends to ensure they remain comfortable. Patients also frequently call her with a myriad of questions about their condition.

But the volume of work hasn’t tired Ms. Agaboru of the job.

“That support you give to the caregivers, the encouragement you give to the patient and then you, the result you see from the patient, it just keeps on encouraging you to do more,” she said.

For Ms. Agaboru, doing more comes in the form of mentorship. She continues to mentor palliative care nurses in neighbouring towns including Nebbi, Adjumani and Yumbe. In Yumbe, she helped convince a clinic to allow their overnight nurse to pursue full-time palliative care instead.

If PCAU’s vision for mentorship goes as planned, the cascade will continue and those health care workers Ms. Agaboru supported will one day become mentors themselves.

Yet despite the success Ms. Agaboru has seen, there are still many challenges in providing palliative care in her district.

Until recently the team at Arua Referral Hospital was comprised of four dedicated nurses. However, one recently died and another is set to retire at the end of the month.

At 56 years of age, Ms. Agaboru is thinking about retiring too. Dedicated her work, however, she has more she wants to accomplish.

With many patients requiring palliative care continuously visiting the hospital, she recognizes the need to establish an independent hospice. Ms. Agaboru has already planned and named a centre — New Life Hospice Arua — but the lack of funding as prevented her from leasing a building or hiring staff.

Regardless of whether New Life Hospice Arua is established, Ms. Agaboru said she won’t leave the hospital until she has a replacement trained and confident in the job.

And retirement for Ms. Agaboru won’t mean leaving palliative care behind entirely.

“I would continue with the mentoring,” she said.

This was produced as part of a media fellowship with the Aga Khan Foundation Canada.