It’s a Tuesday morning in mid-May, and the team from the Rwanda Palliative Care & Hospice Organisation (RPCHO) is preparing to visit the homes of terminally-ill patients in need of palliative or specialized medical care. The team, led by the organization’s Executive Secretary, Eric Kabisa, comprises a doctor, a nurse, a social worker and a psychologist.
For this team, their work tending to needy patients is more than just a job – it’s a deep calling.
This small team cares for over 70 patients with life-threatening illnesses; visiting them in their homes, providing medical consultation and nursing care as well as addressing some of their basic needs. They also offer counseling services to patients and care-givers.
Forbes Africa joined Kabisa’s team, all masked-up and ready with supplies, for the home visits. This team also includes nurse Peace Kyokunda.
Palliative Care an Essential Service
The Covid-19 pandemic has no doubt disrupted the momentum of their work and though RPCHO was part of the essential services that had the green light to operate during the government-imposed lockdown in the country, Kabisa explains why the team had to temporarily stall the home visits.
“Since March 14, when the first Covid-19 case was discovered in Rwanda, we had to stop the home visits and would only do phone consultations. This is because we did not want to put our patients, most of who have very low immunity levels, at risk.”
For cases that needed urgent medical attention, Kabisa and his team would ensure an ambulance was dispatched to pick them up and rush them to hospital whatever time of day or night.
Technology was the only point of contact with the patients during the lockdown period as the team would offer counseling sessions and even guide care-givers via phone on how to handle the patients.
Sadly, the lockdown was not without casualties. Nurse Kyokunda narrates how they lost one of their patients during that period.
“One of our patients who suffered from cancer needed morphine to manage his severe pain but for two weeks, he could not access it… Even though we got him an ambulance to take him to hospital, it was too late. He died at the emergency ward,” she says, her voice laden with emotion.
As soon as the Rwandan government eased the lockdown restrictions, the palliative care team was ready to resume their duty-trips, exercising utmost precaution.
With supplies including cartons of milk and adult diapers, among other things, we set off to visit the first patient with them.
Lockdown and patient loneliness
Soline Kabagwira lies silently on a mat spread out on the floor of her small living room. A combination of cervical cancer and HIV/AIDS has left her scrawny and frail.
The house is quiet save for the birds chirping outside her small window and young children playing in the distance. Her own two children are up and about doing chores their mother would probably have been attending to had she been well.
On seeing Kabisa and Kyokunda, Kabagwira barely manages a faint smile and can hardly move. She welcomes us but does not allow us to take any pictures.
We are the first group of people to visit her since the lockdown.
“This pandemic robbed me of something precious; people’s company. Before, people would come to see me, talk to me and even pray for me. That would give me hope, something to look forward to. But now, it’s quite lonely, no one comes by anymore,” she tells Forbes Africa.
Besides the loneliness, her days are filled with thoughts of what would happen to her children after her time.
“Who will take care of them when I’m gone?” she asks, shedding silent tears.
Kabisa and Kyokunda empathize with Kabagwira and take time to counsel her. They speak words of reassurance and comfort while exuding utmost professionalism. By the time we leave, Kabagwira is calm and gently falling asleep. We leave, but with an assurance of another visit soon. (Unfortunately, Forbes Africa learned that Kabagwira breathed her last on June 5.)
On our trip that day in May with RPCHO, we also meet Antoinette Bayambaze, another patient suffering from cervical cancer. Since the start of the lockdown in Rwanda, her condition has been moving from bad to worse. She is unable to speak but her daughter Angeline Nyirasabimana graciously agrees to share her experience from a care-giver’s perspective.
With a family of her own to take care of, Nyirasabimana has had to find a way to juggle between being a wife, mother, businesswoman and care-giver to her terminally-ill mother. She had somewhat mastered the art of wearing each of these hats, but the COVID-19 pandemic threw her off balance.
“This period has been particularly difficult for us. With the lockdown measures, I could not go to see my mother who lives very far from me. The palliative care team also had to stop the home visits. My mother did not take our absence well as she did not understand much about the pandemic. Her condition quickly deteriorated,” she tells Forbes Africa.
Being far from her mother when she needed her most weighed Nyirasabimana down.
“It was tough helping my mother remotely. Taking care of a sick loved one demands physical presence. There are some situations that just cannot work with social distancing,” she says.
Apart from the distance, Nyirasabimana could not easily access pain medicine as well as supplies such as adult diapers crucial for her mother, which was a main cause for concern during the lockdown.
Integration of Palliative Care with other Health Services
The RPCHO does not work in isolation. In fact, the government considers it a crucial link in the palliative care chain. Dr Francois Uwinkindi is the Director of the Cancer Diseases Unit at the Rwanda Biomedical Center. He works closely with Kabisa and his team to ensure patients with life-threatening diseases in the community get the care they need.
For many cancer patients, accessing the Butaro Cancer Center of Excellence located in northern Rwanda for treatment and drugs was an uphill task during the lockdown period, forcing the government to come up with various solutions.
“Drugs that could only be found at the Butaro Cancer Center were now available at the Rwanda Cancer Center located at the Rwanda Military Hospital in Kanombe. The government would also provide transport services for patients who needed to go for treatment at the Butaro Cancer Center,” says Uwinkindi.
ICT’s necessary to boost access to Palliative Care
The Rwanda government also explored the option of using drones to deliver drugs to cancer patients in the rural areas, saving many lives in the process.
Post COVID-19, Uwinkindi is of the opinion that technology is the way to go. “Where necessary, we should exploit ‘telehealth’ and continue with consultations via phone or video calls. This greatly reduces costs and time,” he says.
All in all, palliative care teams around the world have had to find creative ways to work around the COVID-19 pandemic to provide crucial services to patients with chronic illnesses, recognizing that palliative care is a necessity, even during a flu pandemic.
The real heroes are also palliative care providers who go out of their way for patients with chronic illnesses, like this Rwandan team of professionals that conducts home visits offering critical care to those afflicted even more during the COVID-19 pandemic.
This article by Tesi Kaven was published by Forbes Africa on June 11, 2020