Palliative care providers in Uganda have underscored the need to fast track the enactment of the National Palliative Care Policy which will create a framework for a more effective delivery of the critical service.
The concept of palliative care in Uganda dates back to 1993 with the role of Dr. Anne Merriman who founded Hospice Africa Uganda. Nineteen years later, in 2012, stakeholders began the process to formulate the National Palliative Care Policy under the Makerere University SURE project in collaboration with Ministry of Health, Palliative Care Association of Uganda (PCAU) and Mulago Palliative Care Unit.
However, the policy is yet to be enacted.
The issue of policy was top on agenda during a virtual conference hosted by the PCAU to celebrate palliative care providers on Labour Day as they took stock of what has been achieved over the years and what remains to be done.
Dr. Merriman placed emphasis on the ethos of palliative care, the need for specialists and funding as critical in strengthening palliative care in the country.
She said the COVID-19 pandemic has cast the spotlight on why it is critical to support palliative care in Uganda, the need for adequate funding to facilitate the services as well as advancing the ethos on which palliative care is founded.
“One of the pillars of our ethics is patients must have choice and control over the care they get, they’re our guests and we must never look down on them. We must always do the best we can to make sure they have a peaceful death because that’s what our work is,” Dr. Anne Merriman said.
“With COVID-19, we are going to be called on more often. The patients are going to be looking for us. We will minimize all harm, and make sure we never leave them in pain”.
She outlined the spirit and core of palliative care, stressing that the patient must be always at the center of any decision making. The others are; unity, team cohesiveness and the spirit of ‘Ubuntu’ (African spirituality).
Dr. Merriman cited the unique dynamics that set palliative care apart, among them doing away with bureaucracy in order to ensure nurses have ample time to attend to patients.
“Hospice comes from the word hospitality. Patients must feel welcome to the facility… Palliative care has a role in the changing world of medicine and caring. We need to resurrect caring. We are so concentrated on curing that we always forget about caring,” she said.
She as well highlighted the challenge of funding, calling for local sources of revenue to address the fatigue on foreign donors. She said challenges like COVID-19 have meant that foreign countries will likely focus on using their revenues to solve problems back at home.
On capacity development, she said there is a gap for specialists in the provision of palliative care.
“Nurses are the main clinicians and they are the leaders of palliative care. But we need specialist doctors in palliative care as well. They have not yet recognized the specialty of palliative care. Kenya and other countries have done it but Uganda hasn’t. Why do we need this? Doctors like to listen to fellow Doctors, and nurses would want to confirm what they are doing with a Doctor”.
Rose Kiwanuka, the founding Country Director of PCAU placed focus on some of the achievements in the palliative care services (policy, drug availability, education and implementation).
Since 1993 training in palliative care has been scaled up, from training in short certificate courses (in most of the health facilities) to Diploma courses, Bachelor’s Degrees and a Masters Degree due to be introduced in October this year.
“People are increasingly talking about palliative care which wasn’t the case in 1993. Government nursing schools have taken it on as a specialty. Uganda isn’t only training its nationals but also other countries that come here to benchmark on our model,” Kiwanuka said.
In 2001, a country palliative care team was instituted, to bring together service providers and advance this aspect of health care that was new in Uganda at the time.
This became critical in integrating palliative care in the health sector strategic implementation plan and the Health Ministry’s policy framework. Later, a Statute was enacted which allowed palliative care nurses to be prescribers and subsequently, palliative units were formed in several health facilities across the country.
However, the sector says a lot more can be achieved if the National Policy, whose enactment has dragged for 6 years, is passed.
“The National Palliative Care Policy should be in place because this is going to guide what we have to do as a country. It will help us move miles. When people come to benchmark, we need to have this policy,” Kiwanuka said.
Similarly, she called for a functional Department of Palliative Care at the Ministry of Health with the required support staff. She also made a case for a clear referral system between the hospitals and stand-alone hospices, to better serve those in need as well as stable funding for palliative care.
Progress has been made on the front of therapy for patients on palliative care. Initially, morphine was not available in the form that is friendly for patients. Kiwanuka paid tribute to the late James Makumbi who allowed morphine powder to be imported, and also lauded the government for allowing Public Private Partnerships which facilitated the production of morphine in-country.
She used the day to credit all palliative care practitioners including nurses and other providers who continue to extend services closer to the patients.
On her part, Allana Kembabazi Programs Manager at Initiative for Social and Economic Rights (ISER) says in order to improve the delivery of palliative care and lobby for more funding from government, palliative care must be viewed as a human rights issue.
“We need to center the need to have palliative care as a human right. It’s still thought of as a kind gesture. But we need to rethink it, as a human right. And that when you fail to provide this right, you are not only violating the right to health, but you are also violating rights against inhumane treatment and torture,” she said.
This is important, she said, because this way, it will be easier to lobby for budget allocation which has often been hampered by the shallow understanding of palliative care among legislators.
Advocating for a stronger palliative care ecosystem in the country requires getting other players like Uganda Law Society (ULS), Equal Opportunities Commission (EOC), Uganda Human Rights Commission (UHRC), and the Parliamentary Committee on Health and the populace on board.