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Meet Jean de Dieu*

I first met Jean de Dieu during ward rounds at Butaro District Hospital in northern Rwanda. He was alone in an isolation room off the male ward—not because he had a transmissible disease, but because he smelled.

He had been admitted to the hospital several months earlier with advanced rectal cancer that caused him to be perpetually soiled with feces. His story is painfully similar to others I have heard before in Rwanda and Angola. Over the past two years he presented to multiple providers, mostly at sector-level health centers, with complaints of rectal discomfort and bleeding. He was never given a rectal examination, he had never been referred to a specialist, and had been variably diagnosed with and treated for hemorrhoids or intestinal worms. His condition only worsened, and he eventually came to Butaro Hospital. Here he was found to have a large, fragile, bloody mass protruding through his anus. On rectal examination, one could not feel the top of mass, suggesting it was rather extensive. He was unable to sit because of the pain. The tumor had infiltrated and destroyed his anal sphincters (the muscular valves that allow us to control our bowel movements), leading to his continual incontinence of stool. He had devised makeshift diapers from scrounged plastic (hard to find in Rwanda) and cloth strips. He was emaciated, his gaunt face and sunken temples reminiscent of photos of concentration camp prisoners. In the weeks prior to my arrival the tumor had been biopsied, the specimen reviewed by pathologists in Boston, and found to be adenocarcinoma (cancer of the glandular tissue) of the rectum.

First Reactions

I am immediately uncomfortable. Is there any chance I can offer Jean de Dieu the best care possible?

Even in the best of circumstances, attempts at complete surgical removal of a locally advanced tumor in a nutritionally compromised individual is challenging at best. In a comparatively weak surgical delivery system, operative extirpation of aggressive disease is less likely to be curative, more likely to have devastating complications, and there are fewer options and tools to address complications should they occur. It makes me wonder if the surgical risk versus benefit ratio is in his favor.

Further complicating decision-making is my own status at this hospital—I am only going to be around for a week now and then back for a couple weeks in a few months. Two decades ago, [End Page 95] as I graduated high school, I envisioned my life's work as a long-term missionary surgeon, providing continual surgical care at a hospital like Butaro. Now, making rounds with Rwandan colleagues, I am acutely aware of the change in career path. I am an academic surgeon, working at Brigham and Women's Hospital (BWH) in Boston, spending approximately three months per year in Rwanda— supporting the growing surgical programs in the Rwandan Ministry of Health and at Partners In Health (PIH) supported district hospitals. As I interact with Jean de Dieu, I recognize that I cannot offer him the robust commitment to individual patient care, which my surgical mentors imparted as a hallmark of our professionalism, since I will be on a trans-Atlantic flight to Boston next week.

As a surgeon, most people see the greatest utility in my skill set tied to the ability to take sick and injured patients into the operating theater with the goal of fixing their surgical problems. And frankly, as a surgeon, providing direct clinical care by operating on patients who need surgery is my highest yield activity in terms of positive feedback. The return on investment is usually visible and immediate; at the end of the day, you know you made a difference for someone. As a result I find internal dissonance in my current style of hybrid, academic engagement—I spend most of my energy in programmatic and administrative efforts with at best delayed gratification, and comparatively little time delivering the surgical care and training that provides immediate satisfaction. Of course, you need an operating theater and a surgical system that works to provide that care and training—so, I cling tenaciously to the belief that this hybrid life is building for a better future. One where destitute injured and sick patients can receive timely, appropriate care by well-trained and adequately-resourced surgical providers in their own communities. But honestly, most days I still long to pack my things, my family, and our efforts and move to Africa for a life of direct service.

Next Phase of His Story

Shaking myself out of this reverie, it is clear that we need to make some decisions about how to best help Jean de Dieu now. I raise concerns about his nutritional status, citing his evident tumor-wasting syndrome. Dr. Thotho, my colleague, a Rwandan-Congolese general practitioner with advanced surgical skills and experience, elicits a better history and points out that our patient's cachexia is actually a result of his intentional under-eating to decrease the constant soiling from his incontinence. I am reminded here that honest local partnership is critical for a myriad reasons—one of which is providing this kind of contextual expertise and linguistic and cultural competence.

A few days later, John de Dieu undergoes an exploratory laparotomy; thankfully we find no evidence of metastatic disease—it has not spread anywhere else. His rectal tumor is quite large; I can feel it at the pelvic peritoneal reflection—the deepest part of the abdomen, perhaps 10 centimeters from the anus—confirming the findings of the poor quality CT images we had previously obtained. We then perform a diverting colostomy to provide him relief from the incontinence and the related excoriation and pain. This procedure detours the stool away from his anus, and his cancer, by bringing an end of his colon out through his abdominal wall, to be collected in a plastic bag—allowing him to regain control of his personal hygiene again. "A dirty shirt is better than dirty pants" is an aphorism often cited by my former mentor. Post-operatively, he begins nutritional supplementation—essentially adding as much peanut butter as possible to his diet. Over the next few months he gains 20 kgs. Already he looks healthier and happier.

Next, we need to think about a multi-disciplinary approach to his locally advanced cancer. Gratefully, a remarkable collaborative multi-institutional team from BWH, the Dana Farber Cancer Institute, and PIH guides this discussion. Neo-adjuvant (that is, pre-operative) combined chemotherapy and radiation therapy has been demonstrated to shrink tumor size, and increase the likelihood that his next operation—removing his rectum and the tumor—will cure his cancer. Chemotherapy we can provide for him within Rwanda. Radiation therapy is another story—that can only be delivered in neighboring Uganda and is quite expensive. The [End Page 96] Right-to-Health-Care funds that usually provide for these services are already depleted for the year. I muse that John de Dieu's case highlights an ever-present tension—we seek, from a rights-based approach, to provide the best health care possible for each of our patients, and yet the all-too-visible resource-constraints often force a utilitarian reality on our ideals. Jean agrees to be transferred to Rwinkwavu, another PIH-supported district hospital to undergo FOLFOX (a combined chemotherapy regimen) for three months. Why three months? Because that is the window of time until a surgeon, me, will be available again to operate on him to remove his tumor. Again, I am forced to wonder if we are doing the best by him. Wouldn't it be better if his cancer resection operation were timed around an optimal chemotherapy regimen? But I know the (very few) other surgeons in the country, and I know that they are swamped. Ultimately, Jean de Dieu's treatment course has to pivot around the scarcer resources —in this case, a trained surgeon.

Three months later, he undergoes an abdominal-perineal resection of the rectum. A big operation, usually done with two surgeons—one working from above in the abdomen, the other working from below in the perineum—to remove the entire rectum and the surrounding tissue. This time it's done with one surgeon and takes all day. The operation is difficult. The left ureter is inadvertently divided, and so has to be re-implanted into the bladder. His tumor, though substantially shrunken by the chemotherapy is still rather large and locally advanced. At the worst spot, it is densely fixed to the prostate. Given the limited lighting, equipment, and reconstructive options, I decide that the safest course of action is to shave the tumor off the gland delicately—rather than a radical resection, which would require a complex reconstruction of his bladder and urinary system, which we lack the capability to perform or to care for. Ninety-eight percent of his tumor is removed, but the last two percent still remains in his body, stuck to his prostate. We discuss further with the multi-institutional cancer team—he will require further chemo, but it is unclear if this will offer any survival benefit.

Is Jean de Dieu Better Off?

I think so. But I continue to wonder.

Am I his primary doctor, as my surgical training has inculcated in me that I ought to be? No. There are many actors in his story that have contributed, and continue to contribute, to his care. The district-based teams composed of Rwandan general practitioners, American internal medicine specialists, and Rwandan oncology specialized nurses have done most of the heavy lifting of his day-to-day care. They have had guidance from the multi-institutional cancer team based in Boston. On the surgical side, a BWH Global Health Equity resident in general surgery worked along with surgically-oriented Rwandan general practitioners, operating theater staff, and PIH procurement teams to strengthen the surgical delivery system. A senior Harvard medical student working on a quality improvement project at Butaro Hospital has acted as the coordinator for the surgical team, as there is currently no in-country national coordinator. A BWH anesthesiologist is now working full-time in Butaro, constantly training Rwandan anesthesia providers, and strengthening the critical care capacity. Working in concert, this team has been Jean de Dieu's primary doctor. And these individuals are also actors in the stories of countless others. In as much as they work together to improve health, they've created a system of health delivery to benefit the many.

There are clearly joys in doing this work. There is joy in seeing Jean de Dieu receive and benefit from high-quality multi-disciplinary cancer care. There is joy in seeing him be able to sit erect, now that the tumor is removed. There is joy in seeing a surgical delivery system grow and transform. A year ago, Butaro Hospital was essentially able to only offer emergency caesarian sections—a critical service, but hardly a full complement of surgical care. Now, with a more robust system and team, it is providing more complex orthopedic, plastic, and general surgery services, as in Jean de Dieu's case.

And there are also frustrations. We didn't get it all right for Jean de Dieu. He had surgical complications. We didn't get all the cancer out. In our oncologic lingo, his ongoing chemotherapy is [End Page 97] "palliative only" (it won't cure him). However he is grateful for the ability to sit up comfortably. He recognizes he may eventually die of cancer progression or recurrence, but he is still grateful. I've learned something here.

I still long to be the full-time surgeon based at the rural district hospital, and I continue to have angst about the hybrid life. But Jean de Dieu's story has reinforced for me that delivering quality surgical care for destitute, sick, and injured patients will require developing and strengthening collaborative, interdisciplinary systems of care. The system strengthening that happened around his care continues to improve health for countless others. And so, for now, I live in the hope that I can best serve Jean de Dieu and others like him from this academic, hybrid post—helping to deliver care, training, and build and strengthen systems of care.

A few months ago the Chair of the Department of Surgery and the President of Brigham and Women's Hospital visited Butaro Hospital. While performing a thoracic surgery operation for empyema (pus in the chest), my chairman looked up at our president and commented, "This is hard work. It's not that any one thing is going wrong, it's just that all of it is harder than it is in Boston." It really is harder—our patients are poorer (a lot poorer), their diseases are more advanced, our diagnostics are more limited, the human resources are thinner and less well-trained, the systems to care for patients are weaker, our therapeutics are more limited, and there are a lot fewer funds with which to tackle these problems. From a rights-based approach, our patients here in Rwanda deserve excellent care as much as do our patients in Boston. This is, of course, true wherever there is poverty, injustice, and disparity. When the work is hard, I am reminded that seeking justice and loving mercy are guiding principles for all of us in this work of solidarity. And when the dissonance of the hybrid life hits too high a pitch, I reflect that, "who knows but if perhaps we are in this position for just such a time as this?"


* Name changed to preserve confidentiality

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