The dilemma of the reality in humane cancer care
In 2008 I was appointed by the Rwandan Ministry of Health to work at the Kibagabaga District Hospital. This was soon after I graduated from the Rwandan Medical School. As a young physician, I was driven by a dream to be the best surgeon because of the reality I witnessed in many of the hospitals I visited after the genocide.
Kibagabaga hospital located at Gasabo district, one of the most significant areas of Kigali city with a catchment of 60 % of the population, is a beautiful health setting built by the Ministry of Health in partnership with the Belgium Technical Cooperation.
I did not remember his name, but I do still remember his face, his tears and his pain.
I do still remember his mother kneeling before me, asking to "give something to let him sleep and wake no more" and I do still remember how she was begging in Kinyarwanda, our mother tongue "Muganga, mbabarira" which means "please I beg you."
It was in 2009 when my professional career changed its course entirely after a case I encountered which I was not normally supposed to. I was working in two departments at that time: Surgery and Obstetrics and Gynecology and did not work in any other departments unless there was a pressing need. One of my colleague from intern medicine was sick this day, and the Medical Director called me to do a ward round in his place. It was at this time that I met this patient, a very young man of 24 years old with unimaginable pain. He was wearing a red t-shirt with the Chicago Bulls logo with black trousers. His pain was unforgiving, and he was dying of agony. All of his family waited outside his private room because they could not endure the image of the suffering of their beloved one.
I was shocked to hear the request from his mother especially in the context of the post-genocide against Tutsis and a traumatized society where 1 million of people have died for what they are. I entered the room with a nurse, who gave me his file. I read the notes and learned he was diagnosed with Hepatocellular Carcinoma (HCC) six months ago at the Centre Hospital Universitaire de Kigali (CHUK), a teaching hospital located in Kigali. He was prescribed only Paracetamol (a weak painkiller), Ibuprofen (Anti-inflammatory) and pethidine (a weak opioid) for a few days before being discharged and referred to the nearest district Hospital, Kibagabaga Hospital. I could not even ask him questions: his pain was so intense I could feel it in my own body. I asked the nurse if we could give pethidine and she said that he received it yesterday evening and they could not provide another or otherwise, the patient would become addicted. I was afraid to prescribe another pethidine for fear the patient would become addicted, based on the teachings I received from medical school. In post-operative surgery, we mostly use Tramadol, a category level 2 analgesic but for opioids, it had to be administrated by an anesthesiologist.
At that time the protocol to use morphine was complex; the prescription had to be written in red ink and signed by three different professionals: the anesthesiologist, the clinical director and the pharmacist for less than three ampoules of opioids medication. Opioids in oral type were not available.
Three questions came to my mind when I saw his mother kneeling before me:
"Why had I spent so many years in medical school and I still could not relieve pain for my patient? Why do the dying must suffer?"
I decided to prescribe pethidine despite the protocol, but the nurses were afraid that the patient would soon die, so they requested me to sign a form of responsibility. I was also afraid that I might go to prison for breaking protocol. The patient was silent after taking pethidine intravenously. After half an hour, he began to scream and cry because his pain was even worse than before taking the medication. The family called me again because of the pain, but I told them it would not be possible to provide another pethidine.
The third question I asked myself was why is morphine not available?
"And why has this particular case, and not others before, awoken my sense of humanity and compassion?"
I left the room and the internal medicine department without being able to offer appropriate support to the young man nor his family. But in my mind, I could not stop thinking about what I had just lived and witnessed.
The next day I came to see how the patient was, and the nurse informed me that he had passed away during the night under horrible conditions, screaming until his last breath.
I was still speaking to the nurse when I saw the dead body of the young man covered by a white sheet, taken to the morgue on a stretcher, followed by his family.
I do still remember his mother’s eyes on me and the faces of all his family. In their faces, I could read an expression of sadness, anger, and a feeling of disgust of the medical team and me.
When I went back home after this image, the only question was:
"why did I become a medical doctor to only witness this suffering?"
I do still remember that dilemma and doubt.
The story of this young man is only the tip of the iceberg in the reality of death and dying in Africa. It is essential to understand the context, and the fact that a lack of knowledge, skills, and services leads to patients with life-limiting illnesses and their families to suffer from the disease and its consequences.
Today, access to morphine is a crucial component of palliative care because physical pain is one of the biggest challenges for most cancer patients at the end-of-life. Unfortunately, year after year, medical students and nurses are taught to fear opioids, and that fear has created an uninformed belief that morphine should not be prescribed at the last moment of a patient’s life. This has brought about unintended consequences: increasing myths about the drug, excessive protocols for prescription, enforcement of laws for supply of the drug, and sometimes, punishment.
The concept of palliative care is not intended to substitute the accessibility of cancer treatment but is complementary to the responsibility of humane cancer care.
In most middle and low income countries, the majority of patients come late for treatment when the disease is advanced and at a late stage. It is essential to focus on the accessibility and availability of treatment for those patients, but it is also crucial to focus on their care.
The World Health Organization defines the concept of Palliative Care in not only physical terms but also social, psychological and spiritual. An example of this is access to chemotherapy and radiotherapy without an essential complementary program to support millions of patients with advanced diseases.
The ignorance of this sense of reality has led to what Dr. Paul Farmer describes as the "Iron cage of reality", where the concept of humanitarian motivation has become a bureaucracy of hope, driven only by rules and routine.
We believe that the way a patient dies reflects how society lives. In Rwanda, the social context is well described by this quote "when you are well you belong to yourself but when you are sick you belong to your family". This defines the philosophy of the autonomy of the patient vis a vis to the community.
"When you are well you belong to yourself but when you are sick you belong to your family".
In a broad view and based on our identity as a Sub-Saharan African, the concept of "Ubuntu" defines an individual as a “soul." A patient defined in the community not as an isolated entity but as a “whole” which encompasses the community. Ubuntu in the Xhosa language from South Africa is translated by "I am what I am because of you" will enrich the deep narrative perception of "I as we" in end-of-life care included the relationship between patient and physician.
Palliative care is not optional. It is not an extra, an ‘add-on,' a luxury or an after-thought. It is an essential component of humane cancer care. To develop cancer treatments without the parallel development of palliative care is a cruel injustice to the millions of cancer patients around the world who suffer needlessly. In every country, it is essential that when people talk about access to radiotherapy and cervical cancer screening and chemotherapy –all vitally important—they must also be talking in equal measure and with equal conviction about access to palliative care!
This is again the dilemma of Reality!