In 2009, Dr Christian Ntizimira was doing surgery rounds at Kibagabaga Hospital when he met a 24-year-old man dying of liver cancer. “He had dreams,” Dr Ntizimira said. “He wanted to be an architect.” The man was suffering from Hepato cellular carcinoma and was in severe physical pain. He often screamed, cries that affected his family, the rest of the hospital staff and the surgeon. Dr Ntizimira decided he had to do something to help the patient, so he searched the hospital for morphine or some type of pain relief - he could not find anything. Three days later, the young man died. “I was really touched,” Dr Ntizimira said. “It was a turning point in my life. I really completely changed directions.” He decided to move from surgery to internal medicine and focus on providing palliative care for other patients with pain. Palliative care refers to specialised healthcare to relieve the pain and suffering of patients with serious or life-threatening illnesses. These services are provided to patients through collaboration between doctors, nurses, psychologists, chaplains and other specialists. Unlike end of life care, palliative care begins immediately after diagnosis and involves a holistic approach to caring for the dying. “We use a holistic approach because we don’t consider the disease, we consider the patient. We consider the person as a total person,” said Diane Mukasahaha, the executive secretary of Rwanda Palliative Care and Hospice Organisation. “When, for example, a patient is suffering from cancer, yes he has cancer which is aggressing physically, but immediately his mind is affected, his emotions are affected,” she said. The recipients of palliative care in Rwanda are patients diagnosed with non-communicable diseases (NCDs) including cancer, HIV/Aids, heart failure, kidney disease and stage four diabetes. Palliative care first began during the 1960’s hospice movement when health facilities began to pay greater attention to caring for the dying. It was first introduced to Rwanda in 2005 when the Society for Women Against Aids conducted a small training on palliative care in the country. In 2008, Rwanda trained its first palliative care team using a Ugandan model. “But the documents weren’t really adapted to the reality of the country,” said Mukasahaha. Kibagabaga Hospital in Gasabo District was the first hospital to integrate palliative care into their services. The hospital trained 20 doctors, 80 nurses, and 481 community health workers in providing palliative care for patients – one for each village in the sector. Involving community TThe hospital worked hard to involve the community in palliative care by training health workers. This meant that patients did not have to come in to the hospital to receive care, but instead could go to their local health centres. “The role of the community health worker is to be the eyes and ears of doctors in the community,” Dr Ntizimira said. Kibagabaga Hospital’s model for palliative care, known as the District Palliative Care Network, was used as the prototype for other districts in the country. In 2010, the Palliative Care Association of Rwanda was founded by a group of nurses inspired by patients requiring end of life care. The caregivers consist of visiting doctors, nurses, social workers, psychologists and at times spiritual leaders to see to it that patients are at peace as they deal with the life threatening illnesses. They don’t see it as steering them to the end; instead they see it as providing a basic right. In 2011, Rwanda became the first country in Africa to launch a national palliative care policy. With the support of USAID, the government developed policy, training materials and tools to provide palliative care for the entire country. The government committed to providing physical, psychological, social and spiritual services those with incurable illnesses by 2020. Currently, Swaziland is the only other African country with a stand-alone national policy on palliative care. “The next step is to duplicate the same District Palliative Care Network in all the health facilities in Rwanda. We will do that until every corner of Rwanda, every corner of the country will integrate palliative care in the health system,” said Ntizimira. The Challenge of Accessing Morphine One of the biggest challenges in providing palliative care is accessing opioid (a compound that acts on the human body like morphine, often used for pain relief) pain medication, one of which is morphine. Before palliative care existed in Rwanda, only 0.02 kilogrammes of morphine was administered in the country per year. The lack of accessibility to this essential drug meant that many were dying with moderate to severe pain. Between 2007 and 2009, around 22,000 patients diagnosed with cancer and HIV/Aids died withmoderate and severe pain in the country. But since palliative care began in Rwanda, both access to morphine and trained health workers in prescribing and administering morphine has increased. Mukasahaha explained that prior to the national policy, palliative care drugs were given to Rwanda by donors. Now, palliative care drugs like morphine are included in the national health budget for the upcoming year – this includes intravenous, oral and powder morphine. This year, the Ministry of Health has increased the morphine quantity from 0.02 kilogrammes per year to 5 kilogrammes per year. By 2015, this number will be at 13 kilogrammes per year. Mukasahaha said the advances in providing palliative care in the country are a testament to the receptiveness of the Ministry of Health and the government. “The involvement of the government is unique,” said Mukasahaha. However, while access to these essential drugs is slowly improving, it still does not match the country’s demand. With a population of about 11.46 million, morphine quantity in Rwanda should be around 97 kilogrammes per year. The development of palliative care in sub-Saharan Africa is a slow process. According to 2011 and 2013 studies conducted on the development of palliative and pediatric palliative care, 28 countries in the region still have little to no access to general palliative care, and 43 countries have little to no access to children’s palliative care. But Mukasahaha said managing pain is vital not only for patients, but also for their families. “Pain is a very traumatic thing for a human being,” Mukasahaha said. Mukasahaha recalls one patient who was diagnosed with cancer and living at home. Because the patient was in pain, her family members were unable to sleep and her children stopped attending school. Palliative care assisted the patient with her pain and helped the family cope with the suffering of a loved one. Mukasahaha said as the population of Rwanda ages, there will be more people with non-communicable diseases and more demand for palliative care. The World Bank calculates that the average life expectancy in Rwanda is 55.40 years. “So we have a situation that is positive on one hand, but a challenge on the other, because we will have a high demand for palliative care in the coming years,” she said. Mukasahaha said providing palliative care to Rwandans is about dying with dignity – the antithesis of what occurred during the 1994 Genocide against the Tutsi. “Palliative care is a human right. When someone is dying or is about to die, they must die with dignity. This is what palliative care is,”Mukasahaha said.
