Palliative Care: 'So emotional, stressful but I am happy to do it'

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For 21 years, Resty Nakanwangi has cared for patients suffering severe pain from serious illnesses, most in their last days of life.

Seven of the years have been with Hospice Africa Uganda (HAU). In 1993, Dr. Anne Merriman, an Irish, British doctor founded HAU with the vision of palliative care reaching all in need.

Palliative care attends to the physical, functional, psychological, practical and spiritual consequences of a serious illness, the World Health Organisation (WHO) states.

It’s a patient-family-centered approach to care, providing people with serious illnesses relief from symptoms and stress of the illness.

To achieve the vision, HAU runs outpatient clinics in its three sites in Kampala, Mbarara and Hoima, but importantly conducts home-based care for patients whose conditions are deteriorating from severe illness. To date, it has cared for 39,000 people.

Nakanwangi works in the Kampala site and does go for the home visits. The work is so emotional and so stressful, says the palliative care nurse.
So what makes her stick to the job?

“It’s the pain, the difficult journey the patients are walking,” she says. However, that’s not all, Nakanwangi finds great fulfilment in seeing her patients pain-free.

“When I visit the patients, the first time they are in severe pain, stressed and hopeless.  But on the next visit the patient is happy, wearing a smile on their face, the pain is gone and they are happy to have my company.”

The stories they share with Nakanwangi also keep her dedicated to providing care for the patients. “I get drawn into helping them. It’s so emotional so stressful but I am happy to do it.”

Just like Nakanwangi, Roselight Katusabe a palliative care specialist, is happy to provide care to people in severe pain due to severe illness.

Roselight Katusabe a palliative care specialist, is happy to provide care to people in severe pain due to severe illness. (Credit: Mary Kansiime)

“Our patients come with total pain. Our job is to give them essential care of the total aspect of their pains. We have to assess the patient holistically so that we manage the patient holistically,” Katusabe reveals.

“When the patient affords a smile, they can eat, asks for something particular and we honour their wishes, it keeps us going because it’s all about improving the quality of life, we are not looking at cure but we are looking at healing of the soul.”

On October 12, 2024, HAU hosted the Voices for Hospice event at the Kampala site, to commemorate World Hospice and Palliative Care Day (WHPCD).

The global theme this year was: "Ten Years Since the Resolution: How are we doing?"

The resolution passed by the World Health Assembly on May 24, 2014, focuses on strengthening of palliative care as a component of comprehensive care throughout the life course.

In Uganda, World Hospice and Palliative Care Week began on October 7 to 12, 2024 under the theme: “Committed to Strengthening Palliative Care as a Component for Comprehensive Care in Uganda”

WHO estimates that one percent of a country’s population need palliative care. It puts the number of Ugandans in need of palliative care at approximately 460,000 out of a population of about 46 million.

The palliative care nurses are central in providing this care.

“If you see that your patient has died pain-free with the family around them it gives us zeal to continue caring,” Katusabe says.

“This is not just a profession but it is a ministry it’s beyond a profession because you go beyond what you are paid for to ensure that this patient gets quality of life and also doesn’t die in agony.”