What do you do when you are told that your loved one has a serious illness or condition that cannot be cured or leaves them with serious complications until death? For many families in Rwanda and the patients themselves, it is a huge dilemma.
Take an example of Emmanuel Nyandwi, who was involved in a road accident six years ago that broke his vertebrae and left his lower body paralysed and disabled.
Because of the life-threatening accident, Nyandwi spent a lot of time in the hospital on palliative care, and his family members slowly started abandoning him where he was hospitalised in Kibagabaga hospital. Before he knew it, he was all alone and dejected.
It is a reality many people who find themselves in Nyandwi’s situation and require palliative care have to endure, including those battling life threatening conditions such as advanced cancer, stroke, respiratory conditions and other Non-Communicable Diseases (NCDs).
For starters, palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses.
In most countries with advanced healthcare systems and resources, people like Nyandwi are normally placed in palliative care centres where they are accorded holistic care, not only to minimise the excruciating pain but also ensure that they minimise their suffering, at least as long as they are still alive.
According to the World Health Organisations (WHO), only 14 per cent of the people who require palliative care globally are able to access and a bigger percentage of these are in developed countries.
In Rwanda, palliative care centres are few and not-so-affordable for less privileged patients or families.
The Government of Rwanda has made tremendous progress over the past decade or so, integrating palliative care in the healthcare system and developing a policy that has eased access to the care and medicines needed. Nevertheless, challenges remain.
The biggest challenge so far is the lack of centres where palliative care can be offered, while those that exist are quite costly for ordinary citizens to afford. So far, home-based palliative care remains the easiest option, while hospitals like Kibagabaga continue to fill the gap but the demand for the service remains high.
With the burden of NCDs increasing in recent years, the demand for palliative care also increases, mainly due to late diagnosis, or lack thereof, with patients, especially in rural areas, discovering that they have a life-threatening condition a little too late.
That, coupled with other challenges such as lack of knowledge, stigma, poverty and stereotypes, complicates what is already a dire situation, leaving those who actually require the service in need. It is not clear how many patients in Rwanda require palliative care.
According to Dr Theoneste Maniragaba, Director of the Cancer Programme at Rwanda Biomedical Centre (RBC) and a physician at Rwanda Cancer Centre, no study has been done yet to show how many people need it, but going by the demand, the need for palliative care is real
“There is no study done from Rwanda to indicate the number of patients receiving palliative care. However, a 2020 Global Cancer Observatory (Global CAN) report estimated more that there are more than 6,000 patients who need pain management,” Maniragaba says.
To address these gaps, Maniragaba says that there is a need to strengthen the integration of palliative care at all health levels, including community and home palliative care, as well as improving access to pain relief, including oral morphine.
He stresses the need to integrate palliative care curriculum and specialization within medical and nursing schools so that more health workers dedicate their service to palliative care, which is more of a calling to physicians.
An expert’s view…
Nobody knows Rwanda’s journey towards achieving palliative care than Dr Christian Ntizimira, who has been at the forefront of integrating palliative and end-of-life care in the country’s healthcare service over the past 16 years.
A passionate advocate of palliative care, Ntizimira has played a critical role in advancing palliative care in Rwanda, a hitherto misunderstood concept, and contributed to implementing the national policy for palliative care at the community level.
Currently the Executive Director of the African Center for Research on End-of-Life Care (ACREOL), Ntizimira decided to focus on palliative care as an interdisciplinary specialty in 2008 when he was a medical doctor and later Director of Kibagabaga District Hospital in Gasabo District.
“My dream after medical school was not to be a palliative care physician. My dream was to be a surgeon because I really thought surgery was the best place for me to support patients and families,”
However, his dream would change during the five-year practice at the district hospital, which all medical students must undergo to understand the community they serve before fully practicing or specializing in a particular field.
It is during this period at Kibagabaga that Ntizimira met a 24-year-old male patient who had been diagnosed with Stage 4 Hepatocellular Carcinoma (HCC), a common type of liver cancer, who was in unimaginable pain that he decided to focus on palliative care.
“His mother knelt before me and said, ‘Please do something for my son so that he can sleep and wake no more.’ At the time, the young man was in unimaginable excruciating pain,” Ntizimira recalls.
At the time, he was still a general practitioner, but he had started focusing on surgery as an area he would eventually specialize in, the encounter with the young patient in pain and his helpless mother made him change his mind.
“For this young man, it was pain and suffering at the same time, not just him but also his family,” he says, adding that seeing his mum kneel before him affected him in many ways.
“Naturally, in the Rwandan culture, for an elder to kneel before a much younger person, the situation must be awful,” Ntizimira says, adding that when he went back home, he pondered on what he wanted to do as a medical doctor.
For him, prescribing a painkiller like morphine for the patient was not enough. Something had to be done to minimise the pain people go through, even if their lives could be at the end stage.
“I questioned myself why I had to spend so many years in medical school if my role is just to witness someone who is dying? What is the purpose of being a physician if I can’t heal the pain and suffering of a patient?” he asked himself.
Ntizimira says he could not see the value of wearing the white lab coat and the stethoscope or even walking in the hospital corridors if his job was to witness the pain and suffering of people without doing anything to relieve them.
In 2008, the Ministry of Health together with an international partner, organised a two-weeks training on palliative care, which Ntizimira attended and opened his eyes not just to the gaps but also the lack of knowledge and skills.
During the training, he realised there was something missing and he decided to move completely from his dream of being a surgeon to become a passionate palliative care physician, to help address the challenges he had identified.
From then, he has not looked back. It was a major turning point for him because much as a condition is not curable, it doesn’t mean that there is nothing that can be done to minimise the pain and suffering of the patient.
“There was always something to do because we are not just focused on the disease. We have to focus on the person,” he noted, emphasizing the social and psychological care a patient with a terminal illness needs, beyond just medical care.
Ntizimira deplores the misconception that being diagnosed with a terminal illness or condition is a death sentence, which results in patients in need for palliative care not getting it, sometimes leading to a painful end to life.
For the physician, you can simply not treat a disease without treating the person. The wellbeing of a person comes first.
He embarked on a journey to gain more skills and knowledge on palliative care and also contributed to the implementation of the national policy on palliative care at the community level, with focus on integrating end of life care into health services.
In 2011, after four years of integrating palliative care in public health, Rwanda became the first African nation to adopt a standalone palliative care policy in public health, which marked a big step forward for the country.
From 2012 onwards, the country started to produce its own morphine in liquid form, which is easy to prescribe and administer, removing any fears of abuse. These, according to Ntizimira, are major milestones for the country.
Under the policy, doctors and nurses have been trained in palliative care. However, Ntizimira says a lot more work needs to be done, especially in terms of advocacy and awareness, to bring about a mindset change, because many Rwandans are not well informed about palliative care.
“When someone talks about chronic conditions and palliative care, the first thing that comes to one’s mind is death. They think it is a death sentence, which is not. People confuse palliative care to end of life,” he said.
Ntizimira stresses the need for a complete paradigm shift for people to understand that palliative care is a holistic approach that touches many aspects, ranging from social to psychological, physical, and spiritual care. In other words, it takes a team effort.
He says there is a need for increased investment in the area, including by the private sector, as well as more research to develop models that fit in Rwanda’s context, rather than simply copying palliative care models from other countries which might not work down here.
Ntizimira, who recently authored a book, “The Safari Concept: An African Framework for End-of-Life Care“, said palliative care is more about a response to the suffering rather than looking at it as ‘terminal care’ for seriously ill patients.
He notes that people need to understand that being diagnosed with a chronic condition is not the end of life. In fact, most people tend to live longer than anticipated or complete their journey of life peacefully when afforded palliative care.
“It is sad when people start writing off someone because they’ve been diagnosed with a certain condition that cannot be treated. They start talking about death and making depressing comments and abandon the person,”
“That is not what a patient needs at the moment. They need care and attention, they need pain relief, and they need physical, psychological and spiritual support. That is what palliative care is all about,” he said.
Ntizimira, who is also faculty member of the Palliative Care Centre for Excellence in Research and Education (PalC), Singapore – believes that if Africans had a proper understanding of the concept palliative care, it would solve half of the challenges the medical specialty faces, which are mainly pegged on stereotypes and lack of knowledge.
Answering the calling …
Rose Kankindi Gahire, the co-founder of Rwanda Palliative Care Association, says there is a big challenge because people relate palliative care to dying, which is not necessarily true, because in some cases it can be curative.
The other outcomes can be survivorship or bereavement, when some individuals placed on palliative care can survive for long or die when the right time comes, but most importantly people need to understand that it’s not about death.
Gahire became interested in palliative care back in the days, around 1998 and early 2000s, when HIV/AIDS was rampant, leaving many people with painful and debilitating conditions and they started focusing on the disease.
“At that time, it was organisation working on HIV and AIDS because there were a lot of people who were dying in pain because there was a lot of people having opportunistic infections,” she says.
Opportunistic infections are infections that occur more often or are more severe in people with weakened immune systems than in people with healthy immune systems.
Gahire says at the time, people living with HIV/AIDS were prone to infections such as cancer, tuberculosis and other painful illnesses that left them in Africa.
At the time, Gahire and other people, partnered with Hospice International, which at the time was operating in Uganda, to create what was known as the African Palliative Care Association, which was supported by different partners to bring the idea to Rwanda.
“It was a new medical speciality and most people didn’t understand it,” she says, adding that apart from funding, there was no human resource with the right skills to provide palliative care.”
Grace Mukankuranga, the first professionally trained palliative care nurse in Rwanda, who works with Gahire, says she took a decision to undergo training in 2007 after listening to someone speaking about palliative care.
The duo had been long-time friends, right from school in 1973, and they both got the calling together and joined what was then known as the Society for Women against HIV/AIDS in Africa (SWA), a programme which was running in 40 African countries.
They started the Rwandan Chapter of the organisation in 2001, to support people who were suffering from HIV/AIDS, who they used to visit in their homes.
In 2002, the two determined ladies met a couple from the UK that had come to Rwanda and they joined forces, with the couple helping them to get funding and that is how they started small.
As time went on, the country began to experience other conditions emanating from NCDs and they got the urge to spread palliative care to patients suffering from other life-threatening and incurable conditions beyond HIV/AIDS.
Gahire and Mukankuranga started by identifying the patients who needed palliative care in their homes, because at the time, they would be sent home to face their fate.
“When they would go home, everybody in the family would look at that person who is dying tonight or tomorrow. They wouldn’t look at them as people who can survive or live long,” Mukankuranga says, adding that many would be abandoned and left dejected out of exhaustion.
They got in touch with different hospitals to help them identify and lead them to patients who needed help in their homes or those who were going to be sent home to face their fate.
Some patients would help them identify others who needed help and that is how they started, at a time when nobody knew much about palliative care.
At the time, their focus was adherence, encouraging patients to follow their medical prescriptions but also there were financial and physical needs to support the patients, who were mostly from vulnerable families.
Today, the two women still do the same work, given the increasing burden of NCDs the country is dealing with.
They commend the progress the country has made in advancing palliative care over the past decade or so, much as they reckon that challenges remain.
Among those include access to chemotherapy and radiotherapy services, which can only be found in hospitals in Kigali and in Butaro, in the Northern Province.
Gahire and Mukankuranga request the government to ease further access to medication and basic needs, more especially for people using Mutuelle de Sante.