Pain is hard to explain as it is hard to endure. However, for patients with access to palliative care, telling their stories is easier than those that have no help. World Health Organization defines Palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Thousands of Ugandans suffering from HIV, Cancer, Diabetes, and other terminal illnesses are benefiting from the program, but they are also in the risky population to catch and die of COVID-19. Nearly all COVID-19 related deaths in Uganda were of patients with diabetes, which left many people in panic.
In 1999, the Palliative Care Association of Uganda was established to provide leadership and coordination of civil society efforts towards the integration of palliative care in the country. For patients who are in dire need to handle their pain during treatment or if in case dying, they would undergo palliative procedures. Palliative care is a medical caregiving approach aimed to optimize the quality of life and mitigate the suffering among people with serious and complex illnesses. Often palliative care is served at Hospice facilities
Hospice Africa in Uganda
In September 1993, a two-person team, led by Doctor and Professor Anne Merriman, arrived in Uganda with a dream to help people in pain through palliative care. With funding that would only last for few months, Dr. Merriman was driven to start the project to address the overwhelming unmet need for palliative care in Africa with the help of her team from Hospice Africa Uganda. She eventually settled in Makindye in Kampala where the head office is still located. “Having to choose Uganda for the project, and being able to introduce it to Ugandan patients and their families is exactly what we need to do. We find Uganda affordable and culturally appropriate for the project we have developed. This has taken time and dedication, but it came to life after 23 years of research. Hospice Africa Uganda commenced confidently with Hospice Africa vision providing dedicated support.” Dr. Merriman quotes.
“Palliative care for all in need in Africa”.
A vision by Hospice Africa.
To date, Hospice Africa’s and Hospice Africa Uganda’s vision remain the same as they showcase multiple skill sets to promote their services, including Providing palliative care service to patients and families in Uganda through the Clinical Department and Morphine Production Unit, carrying out educational programs to train medical staffs in order to support outreach to most of Uganda’s districts and Africa as a whole through the Institute of Hospice and Palliative Care in Africa, and International Programs Department.
Only 10% of the patients in need are accessing palliative care in Uganda according to World Health Organization. The World Palliative Care Alliance has recognized Uganda as among the countries having the highest palliative care level in the world https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf. Hospice Africa Uganda is also recognized as the best in providing palliative service operating under an excellent model scheme in community-based care in Uganda.
On Thursday 23rd July 2020, Joy Hospice in Mbale district, became the center of attention when a 34-year old woman who had been admitted at the facility, died of COVID-19, marking Uganda’s first death due to the pandemic.
Joyce Zalwango the Advocacy Officer at Palliative Care Association Uganda PCAU says the patient was referred to Hospice from Namisindwa health centre where she was working as a nurse and was diagnosed with pneumonia.
She suffered acute chest pains and difficulty in breathing, prompting the medical staff to check her for CoVid-19.
“The patient was referred to Joy Hospice centre in Mbale. She was a health worker with Namisindwa Health Centre III. They were treating her for pneumonia and when she was not improving, they decided to refer her to a Hospice for care since it has admission for the terminally ill” Zalwango explains.
Admission to Palliative Care
Palliative care is administered in different ways according to Mark Mwesiga, the country director of Palliative Care Association in Uganda. While some patients are admitted at different hospice centers, others receive home care from community volunteers and local health workers. There are also outreach programs that deliver palliative service once a month, depending on the district.
Volunteers and health workers also visit several hospitals that do not provide palliative care. Such as Nakasero Hospital, Mulago and, the Uganda Cancer Institute. These hospitals are known for treating critically ill patients who seek pain management.
“Palliative care is all about becoming closer to family.”
While the first visit of any new patient generally occurs at a HAU clinic, the majority of patients are seen in their own homes in the community. For patients who have no treatment or choice and await their deaths, there are many reasons why staying at home with their loved ones is preferable. Palliative care is not all about easing through the dying process but to psychologically prepare the sick and their families for what is about to happen.
Palliative care is now available in 92 of the 112 districts in Uganda. Patients living in the 92 districts gather in a specified location to receive medical assistance. While those who live in the other 20 districts, where palliative care cannot be reached, are followed up by phone calls on their progress and are assisted with their medical needs.
“An outreach program is organized specifically for those low-income patients. For example, patients in Mukono always have a once in a month review at Mukono Health Centre by the hospice team. Since its a short visit, patients get to spend the entire day at the center where they can have lunch and tea breaks, and then leave in the evening with their medications.” as Zalwango explains.
Another division of the outreach program organized by PCAU, is to train health workers and nurses on palliative care, and how and when to prescribe Morphine which is administered by HUA and provided free of charge to patients in need.
“Morphine is a Class A drug and initially was only prescribed by doctors. But with the PCAU training, health workers will be permitted to prescribe Morphine. We also provide supervision and mentorship at different health facilities because we are looking at strengthening the health systems in Uganda to support palliative care. Trained health workers can help patients in distant villages and towns with pain management” as told by Zalwango.
No Funds, No Palliative Care
Like many organizations affected by the COVID-19 pandemic, PCAU has faced challenges with funding as it relies mostly on donations from abroad which support the palliative care project. However, the pandemic had hurdled its main financial support and the association had to seek ways to continue providing palliative care.
“While patients are expected to pay for the services received, others won’t be able to do so yet they still need to be helped. They pay a small fee for consultation as an outpatient. This was planned to sustain this project, we know that funds are dwindling now. However, patients are not being rejected and neither are they denied care even if they don’t pay” Zalwango said. “We have lost many patients. Some of them could not be visited by hospice teams due to the lockdown, while others could not travel to health centers for help.”
We need airtime, fuel, and salaries for health workers and funds to motivate volunteers.
Zalwango continued to explain where the Ugandan government stands during the crisis. “ They don’t offer direct funding but they help with the provision of oral liquid Morphine which is a pain control medicine that is already distributed for free to the entire country. So the government only supports with access to the most essential medicine for palliative care.”
She added “with the decrease in funds, it impacts both the health workers and patients because there is a need to sustain and facilitate utilities. For example, if there are no funds, the outreaches will not be conducted. Because these require fuel for travel to different destinations and salaries as well, although we also have volunteers in the communities that can support the health workers themselves. Yet with no funding, health workers may divert to join hospitals and this would impact us as much.”
Patient’s Smile is worth everything
With all the challenges the PCAU is facing, Mr. Mwesiga has an optimistic view of the future: “I expect things to change for the better as the government is slowly realizing its role in integrating palliative care into the health care system. Recently the Ministry of Health in Uganda has set up a Division of Palliative Care to coordinate this service in the country. But there is still a lot to be done regarding ensuring direct funding for palliative care. There need to be deliberate efforts by the government to ensure the National palliative care policy is passed and funds are being allocated for community engagement and awareness on palliative care. The government needs to offer resources to hospices because they fill a huge gap of offering home care which government doesn’t support. Especially with the pandemic and the high risk of mortality, hospices need donations more than ever.”
Rose Kiwanuka, Uganda’s first nurse to join palliative care in 1994 went on to describe her job: “I was the first nurse in Uganda to get into palliative care. What inspired me to join the HAU was the suffering of people which I was seeing every day on the surgical ward in Nsambya hospital. I then joined PCAU from 2006 till 2019 because I believed in their vision to spread palliative care to all districts of Uganda. And I worked myself to
After retiring, Kiwanuka continued to help her community with local health centers to enhance primary health care. Although she still faces challenges with patient transportation during the lockdown, Kiwanuka tries her best to facilitate palliative care in the community. From recruiting community health care workers to undertaking regular home visits and liaising with volunteers and health care workers, and spreading awareness on sanitation to improve her community’s health condition. She also helps in building networks with the health facilities to create systems in order for her community to seek health care easily.
“I wouldn’t like to see anybody suffer pain when I can see help.”
As a palliative care nurse, Kiwanuka says she will never forget her first patient. “The very first patient I saw get palliative care in Nambya, she had a lot of pain strong fouls smell which prompted the staff to isolate her. But when she was initiated into hospice and palliative care, she became a new being. Her pain was controlled, the foul smell disappeared. Even the health care workers who used to avoid the room started going in to talk to her. She was discharged with a smile on her face much as the disease had not gone away”
Donate to Hospice Africa Uganda
Hospice Africa Uganda founder, Dr. Merrimane, is running an online funding campaign to raise £85,000, to keep the organization alive. The donation had reached Support the cause through the following link: https://bit.ly/3iNzwhK.