It was in March 2014, during my outpatient consultation at Kibagabaga Hospital in Kigali, that I met my new patient Ingabire (her name has been changed for confidentiality), a vibrant young lady, aged 25 with big eyes and a wonderful smile. As with many young Rwandan women, wearing make-up, lipstick and slim fitted clothes have become commonplace fashion adopted by this new young generation, influenced by top model observed through the media.
When I saw her entering the outpatient office, I assumed she came as a caregiver of one of her parents or on behalf of one of the patients we had in the community. However, to my surprise, the nurse I worked with handed me Ingabire’s patient file.
“Good morning doctor,” she said articulately in her mother tongue Kinyarwanda, accompanied by a radiant smile.
“Good Morning Ingabire, how are you?” I replied.
“I’m fine but I’ve had chest pain since last week,” she said. As she spoke, her gaze descended and the volume of her voice diminished.
“I have been referred to you by the surgeon from the Rwanda Military Hospital for pain management because I had been diagnosed with cancer on the left breast two years ago, which was treated with a mastectomy and chemotherapy. Last year, I felt small nodules in my right breast and returned to my surgeon, who suspected the cancer may have returned to my other breast.”
It was clear that underneath all Ingabire’s external exhibition of style, that this young woman was psychologically devastated by the diagnosis. I was surprised to see she came alone, without any person to accompany her especially during this difficult time.
“Has someone came with you like your parents, uncle or aunt?” I asked her.
“Unfortunately not!” she said.
“Why? Are they busy? Because I need to talk to your family about the way forward,” I replied.
She then told me with all her large brown eyes widened further, “All my family died during the genocide against the Tutsis in 1994…I lived with a family friend which was a neighbor prior the genocide. I have no parents, uncles, aunts, even cousins; all of them have been killed during the genocide. I’m alone,” she finished saying with tears in her eyes.
I got goose bumps when she answered my questions and also felt guilty for not being able to help her as I had wished. With tears and a handkerchief in her hand, she added, “if my mother was here, [maybe] none of this would have happened, I wish I could have died with her during the genocide.” Those words were like a sword pierced into my heart.
Ingabire was five years old when the Genocide against the Tutsi started. At the time, she was living in Kigali with her parents, two elder brothers and two sisters. Her last image of her parents was when her mom took and hid her in small place behind a house. Soldiers from the Rwanda Patriotic Front found her two days later, weak with fear.
Significance of the memorial week
Ingabire is among the million people in Rwanda who survived the Genocide against the Tutsi in 1994. During the week from April 7th to 14th 2015, Rwanda commemorated 21 years since the genocide.
Every year, during this memorial week, public hospitals are prepared to receive many cases with trauma disorders, which emerge during the commemoration: Crying, convulsion, screaming, and loss of conscience. At the same time we have to face a double challenge from patients who survived the genocide and are living with chronic or life limiting diseases.
As a palliative care doctor, I daily experience the ramifications of working in a post-genocide society and its impact on patients and caregivers facing life-threatening illness. I’ve learnt to manage these cases at a different level compared to cases of patients who are not genocide survivors. Case management should indeed be different because of the patient’s background and experiences, the context of the disease and psychological impact.
In their article, Conflict and Health (2013), Rieder and Elbert discuss the Post Traumatic Syndrome Disorders (PTSD), mental health and psychological problems of survivors, former prisoners and their children following a period marked with neighbors attacking neighbors with “guns, machetes or sticks,” looting, destruction of property, and “genocidal acts including murder and sexual violence.”
Rieder and Elbert continue to note how “…entire family systems as well as the general social fabric that formerly provided support were destroyed due to losses of family members and growing mistrust and fear following the genocide.”
Patient autonomy in a post genocide context
In the Rwandan context, the cultural impact is important and I have learned to work with respect to the culture, while combining modern management principles to improve the quality of life of my patients.
Ingabire’s context in relation to patient autonomy is best described in the saying, “When you are well you belong to yourself, but when you are sick you belong to your family.” As long as someone is well, they have the autonomy to make their own decisions, their own plan and decide about their own future. However, as soon as that person becomes sick, especially with a chronic disease, even if they are still able to make some decisions, it’s automatically the family’s decision that orients the patient management of care.
Since I’ve started work in palliative care in Rwanda, I have never been contacted by the patient themselves, even if they were able to do so. It’s always been the members of the patient’s family calling me for an appointment for their loved one to explain the patient’s treatment history, expectations and to discuss their future plan of management
In western countries, patient autonomy is really clear and the implications of family engagement will depend most of the time on the patient’s decision, which is to be respected. However, when I recently discussed the concept of culture impact vs. patient autonomy with a palliative physician colleague from the United States, she shared that in her context “when you are well you belong to yourself but when you are sick you belong to your home.”
Palliative care as an Ubuntu approach
The WHO defines palliative care as “an approach.” In my opinion, as an African and palliative physician, the definition of palliative care is beyond as an “approach”, it’s a concept which encompasses an “Ubuntu philosophy” defined as “I am what I am because of who we all are.” Or, “I am a person through other persons.” It speaks particularly about the fact that you can’t exist as a human being in isolation. It speaks about our interconnectedness.
The patient is not a single component of him/herself or a single unit of input into data, but a component interconnected with the other as a person, a father, a mother, sibling, a member of a community, society, a country and continent.
Back to the Rwandan context, I’ve learnt three lessons from my experiences in palliative care in a humanitarian context in dealing with survivor patients:
History and background matter:The first and most important lesson when you want to manage the care of survivor patients from massive traumatic situations is to understand their history, not only their stories. Pain management and palliative care for patients in humanitarian contexts should be treated differently compare to the same patients with the same diagnosis with a different context. The patient’s history and background must be accounted for. Why? During the period of commemoration, for example, patients developed more psychosocial pain than physical pain. Whatever the quantity of strong opioids that may be used, they still feel pain. The WHO ladder doesn’t work in such a context. Another pain management approach is needed to address the patient’s history and background. For example, a patient impacted by a mass traumatic situation like a tsunami, civil war, Ebola, genocide, rape in the diagnosis and treatment of cancer will react differently in their management compared to a patient who has never been affected by these situations.
The psychological context of disease:As a physician, I could explain easily the physiopathology of diseases then decide on the best course of treatment. For most of my patients who survived the genocide, chronic diseases or life-limiting illnesses are considered as a punishment or a consequence of genocide. In my ehospice article on “Providing palliative care in post genocide Rwanda,” I explained that “a lot of patients express during counseling that they feel that there is a strong correlation between what happened to them during the genocide and their current situation.” Patients identify themselves with the disease as a consequence of post a genocide situation, or an instrument of identification to those who died during the genocide. With these patients, I have to use different language, ridden with compassion as a person rather than a physician, explaining in simple language about their disease. One of my strategies when I’m visiting these patients is to remove my lab coat to break the barrier between the physician to patient pedestal to empathise at the patient and family member’s level, especially for a lethal diagnosis.
Correlation between survivor patients and social support:In Rwanda, the psychosocial aspects of palliative care must be given great focus as so many were affected by the genocide. If we avoid this reality then one fails to offer effective palliative care. As a physician I must consider: how deeply this situation has affected my patients? How is the patient able to cope with his/her loss? In our cultural context, because someone who is sick belongs to their family, the best way to manage the patient’s psychological problems is to support families and caregivers. It took time during my practice to understand the strong relation between patients and family, sometimes I took both of them as one unit. However, there is a strong correlation between family psychology behavior and patient psychological impact, and one can affect other and vice versa. Research into the psychological impact of survivor patients with cancer or incurable diseases in the context of palliative care could help us to understand the scope of this correlation.
During the genocide, a part of our humanity was lost along with the one million who perished. However, I’m still convinced that the concept of palliative care will bring back this part of humanity lost and will teach us to understand the deep perception of being a “human being” in extending hope for the Rwandan post genocide society.
This article was originally published on ehospice, the world’s leading hospice and palliative care news website. It is reproduced with permission.
Dr. Christian Ntizimira is the Head of Advocacy & Research department of Rwanda Palliative Care & Hospice Organisation (RPCHO) and Former Director of Kibagabaga District Hospital in Kigali (2010-2013). A Palliative Care Expert (from Harvard Medical School) and Educator, Dr. Ntizimira pioneered integration of end of life care into health services rendered to Rwandan patients with chronic illnesses in acute care and community settings. Dr. Ntizimira is a Researcher collaborator at Harvard Global Equity Initiative - Lancet Commission on Global Access to Pain Control and Palliative Care (GAPPCP).