Finding Hope in Pediatric Palliative Care in Africa

Defining Care in Developing Countries

What is “standard of care” at [this medical center]? Where was our gilded codebook of ethics and, as outsiders, should we be defining the boundaries of ethical practice? In this foreign landscape, our moral compass seemed to offer limited help in navigating the ocean of ethical quandaries.

I am aware that it is not enough to sit here behind my researcher’s desk, musing on the itemized challenges of palliative care in Africa. It is my sincere hope that … some sound developments can be made for an integrated, workable palliative care program.

It is my hope that amidst the flurry of clinical activity required to care for these very sick children, that we can step back and consider the broader implications of our flurried good works: the impact upon families, communities, and societies; the limits of treatments we can offer, and other treatments that we could be offering—for the lucky ones as well as the less lucky ones.

As a visiting researcher and sympathetic pediatrician, I wonder how we will untangle these tightly bound barriers. Some answers, I hope, will come from the inside—from the recorded, transcribed, and translated words of staff themselves, and from the clenched mouths of patients like M.

Patient M

Our previously mentioned patient M, the 14 year-old misfortunate with advanced osteosarcoma of her left leg, had been on the wards ever since I arrived here. She was waiting for a disarticulation of her diseased leg, if/when the surgeons decided to operate—or so we thought.

One morning, M’s mother and grandmother (neither of whom we had met, as it was her sister usually stationed at her bedside) appeared, demanding to take M home. It seemed they never actually understood, or agreed to, the plan to remove the leg, instead expecting a fix for the pathologic fracture only. They could not accept their daughter with one less leg, even if it meant it was the only way she would survive. If left alone, not only would the cancerous leg continue to cause unbearable pain, it would also allow the cancer to spread, seeding in her lungs or brain and likely causing death.

This prognosis was explained to her family over and again. Each new hospital staff that came onto the ward—including social workers, nurses, even cleaning staff—warned them of M’s inevitable death if they took her home now. This wasn’t so much counseling as it was lecturing, ordering, and berating. Even the cleaning lady, donned in plastic apron and big rubber gloves, holding a ratty mop in one hand and pointing an accusatory finger with the other, took a turn in this play of paternalism. Apparently even she had grown quite attached to our friend M during her daily cleaning rounds. And, as is often the case with such paternalistic directives, the family complied.

Another week passed with M in her usual place on the ward, finally getting much-needed blood transfusions now that the hospital had blood again. She continued to claim she couldn’t feel pain, unless she moved. So, after lying on her massive leg unmoved and untouched for several weeks, she—quite predictably—developed an angry bedsore.

Such a sore was no small matter for M, whose engorged leg soon began to ooze, bleed, get infected, and grow necrotic. Now the pain was truly unbearable. M could no longer maintain her composure—sweating, grimacing, and outright crying. There seemed constant confusion around what pain medicines had actually been prescribed, what the family could actually afford to buy, and what pills she had been given that day. Whatever she was getting simply did not touch her pain. So, we brought her some donated oxycodone pills, though our stock was limited. M seemed to have momentary relief, but still she began to deteriorate clinically.

Ironically, as she began needing more medical and nursing attention, hospital staff began to back away from her. True that the smells emanating from M’s bed would repulse anyone—old blood, stale urine, and rotting flesh—but she was often left with a dry bag of IV fluids and dressings unchanged for days. Only her enduring sister remained at her bedside.

Soon, the family again requested to please let them take M home. They were even more broke now, with other small children at home and surgeons still refusing to operate. Another unspoken, yet widely known, reason compelled them: If M passed away while hospitalized, they would have to pay fees for the mortuary as well as transport to get her body back home. Everyone—even us—understood the financial catastrophe this would create for her already ruined family.

Still, after the first round of scolding and ordering that we witnessed, I expected at least some resistance from the staff. But this time, with M writhing in her own stench, pain, and despondency, the staff simply signed off on her discharge orders. There was nothing more we could do—no more blood, no pain medicines, no surgery. Still I could not accept this. I called an acquaintance at the district hospital to see if they had morphine to send her home with, to at least make her final moments more peaceful. No answer. I circled back around to the staff who had been so adamant just a few days prior; they threw up their hands. It seemed there was, indeed, nothing more we could do.

Essential Care That Crosses Cultures

Before they left, we sat down with M’s sister and handed over as many oxycodone pills as we could spare, explaining with pictographs how to administer it. We explained that in weeks to come, M might not be too hungry, and that her sister need not force her to eat. We warned her of other bodily changes to expect as death approached. She stoically nodded her head yes, yes, and then proceeded to shower us with thanks. We accepted the gesture, though feeling we absolutely did not deserve her gratitude. We in turn thanked her for taking such excellent care of her sister. She cracked a smile. I took her hand and said “Poleh, sorry.” My Swahili awkwardly stopped there, but she still gave me another acknowledging smile before leaving.

For our dear friend M, her sister did more for her than our entire 9-story multispecialty hospital. Though it is true that patients like M have fewer choices in resource-poor cities, it is also true that what is often most needed is not an advanced medical procedure, fancy equipment, or a new cutting-edge pharmaceutical. Though such devices and interventions may have their place for children whose lives are salvageable, in cases like hers, what was most needed was clear, open communication, from the start. She needed basic nursing care, she needed comfort and relief from pain, and she needed respect even when there was no hope for cure.

During an interview, one staff informant captured this reality beautifully: “It’s often our presence more than what we can do for them,” he said. I would like to think this holds true across worlds, disparate as they may be.

About Emily:

Bahar Emily Esmaili is a practicing pediatrician and an MA candidate in the Duke Initiative for Science & Society’s Master in Bioethics & Science Policy program.
 

Additional comments from Emily:
As a pediatrician working in the developing world, I found that while we have become quite good at saving the lives of children, we have not addressed the ethical implications of our life-saving measures. Global health practitioners often face difficult end-of-life situations with no policies, guidelines, or board of ethics to influence their decisions. Through the MA in Bioethics & Science Policy at Duke, I wish to address this gap—both through gaining a critical understanding of bioethical dilemmas, and through gaining skills needed to influence legislative and policy changes around the largely neglected issue of life-sustaining treatment in pediatric medicine. Beyond this program, I hope to remain active in academic pediatrics and continue to teach medical students and residents on issues of global bioethics in pediatric practice, contribute to research and policy-making in this field, and work as a pediatrician and clinical ethicist in the developing world.