Consequential Compassion

The dusty road through Etoko

As a part of my job as an epidemiology Fellow, I presented a poster at a conference on tropical medicine in Philadelphia a few weeks ago. After four long days of research presentations, posters, and public health plenaries, I confess: I was exhausted. On Wednesday afternoon I had hoped to sneak away from the fray, and explore Philly–a city I’d never visited and whose rich history (at least by American standards) intrigued me. Instead, I was driven back inside by yet another gloomy day of rain. Instead of seeking out the liberty bell, I found myself at a conference presentation entitled, simply, “Compassion”.

The panelists included a number of public health giants, among them one of my personal heros, Bill Foege, and began with a video of a summit held at the Carter Center that had been attended by a small number of world leaders in health and development. The video simply chronicled their multi-day discussion on the meaning of compassion and its place in international health.

The dictionary definition of “compassion” states that it is “Sympathetic pity and concern for the sufferings or misfortunes of others,” or, in other words, the desire “to suffer with” someone who is hurting. As the discussion of compassion played out at the conference video, Paul Farmer stated, in his typical frank and no-nonsense style, that he had worked all over the world, in Haiti, and Africa, and slums in Latin America, treating patients, and never once had he met someone who asked him to suffer with them. Compassion, he stated, was only useful for those suffering if it resulted in action to alleviate it. Consequential compassion, then, was what mattered.

The conference panel–many of whom had been a part of the original summit–had wonderful things to say about the need for and benefit of consequential compassion in international health. The conversation ranged: from the idea of society as a form of organized kindness, to Desmond Tutu’s quote

“A person is a person through other persons. None of us comes into the world fully formed. We would not know how to think, or walk, or speak, or behave as human beings unless we learned it from other human beings. We need other human beings in order to be human. I am because other people are. A person is entitled to a stable community life, and the first of these communities is the family.”

However, it was the question and answer session that truly moved me. A woman–a microbiologist studying lymphatic filariasis–stood up and told a story about a trip she took last year to Papua New Guinea. She spoke of night blood testing for the parasite (which is best detected in the hours around midnight to 2 a.m.), of praying that that her hosts and the community members with whom she was staying would be negative. She talked of hospitality and heart break, of a small line on a rapid test for the woman whose room she was sharing that cleaved her life into before and after. Her voice broke as she finished, and there were tears quivering in eyes around the room. She had told her story, but she had also told ours.

I think everyone in that room had returned–mentally and emotionally–to their own cleaving moments. To dusty clinics, to jungle outposts, to rainy season treks, to malnourished children in supplemental feeding lines, and women giving birth on battered tables in cinder block rooms hours away from a hospital. Or help.

My before-and-after moment in public health is inexorably connected to my mother.

Almost exactly five years ago I was doing patient intake in a dusty cement “clinic” in northern Cameroon. Hundreds of patients from the surrounding villages had walked to our clinic, which was being subsidized by our small group of college students and a partner NGO. We had enough money to pay for a single doctor to run the clinic for a week, and a small staff of health assistants. I was one of the students responsible for signing patients in, taking temperatures and blood pressures, as well chief complaints and brief clinical histories.

I went from patient to patient, tall, thin women seated on a battered bench along the chipped back wall. As I reached the end, I asked the woman seated there why she was visiting the clinic that day. She touched her chest, a couple of inches below her collar bone, and told me she had a lump in her breast. Her long-fingered hand rested there, above her heart, as I tried to control my breathing, the small muscles in my face. My own mother’s breast cancer had metastasized only weeks before this, though I had only told a handful of close friends at that point. Shakily, I asked the woman how long the lump had been there. “Two or three years,” was her heart-rending reply.

A few moments later I stepped out onto the back patio of the clinic, breathing hard. I stood looking out over the vast Cameroonian jungle, the sun just a hazy orb hanging in the red-dust air above the palm trees. All I could see, though, was the vast white hallways of the IU Medical Center, the rows of clear, dripping chemo bags, the glossy magazines on the wooden waiting room tables. I could hear the soft padding of the nurses’s rubber-soled shoes, the swish of the doctors’ long white jackets. I imagined the orange pill bottles lined up around the rim of my parents’ sink like sunbathers, the wigs perched upon their wooden stands, endless boxes of single use needles, and the neatly typed insurance forms that ended with $0.00 in the “Total Owed” column.

Here in Cameroon, the cost to simply travel to the nearest hospital–much less receive treatment–was simply beyond the resources of many members of this community. The harried doctor in the next room was under-supplied in an under-staffed remote clinic he would visit, at best, once a month. In the few days that I volunteered there I had already seen a complicated delivery, cerebral malaria, onchocerciasis, and pneumonia, not to mention a number of umbilical hernias, uncomplicated malaria, and a host of preventable childhood illnesses. It seemed that everyone was sick–the vast majority suffering from illnesses that we would find inconceivable by virtue of their ease of prevention here in the developed world.

My world split in two as I wrote down “Pain and lump in the upper portion of the left breast, present for 2-3 years” on that patient history form. Kneeling on a dusty cement floor I realized that my family and I, we were the lucky ones. We had access to health insurance, cutting edge treatments, and choices. The calculus of treatment–and diagnosis–was radically different for us because of those unearned privelages.

That cleaving moment led me to public health. It was the moment that gave my life and my career a direction and a purpose. But meeting that woman also provided me the lens through which to view my mother’s illness and my family’s own personal tragedy. Losing my mom was terrible, but gaining 3 years with her because of world-class treatments and dedicated, knowledgeable, and available physicians was a luxury and a gift that is at best unevenly distributed. What distinguished that woman in the clinic from my mother, other than the chances of birth and circumstance?

As the holiday season rolls around, I would be lying if I said I haven’t had some really dark moments. I miss my mom terribly. I always will. But as I think of her, I also wonder if there is another family in rural Cameroon that is also missing a wife and a mother–and who likely never received the benefit of treatment, or even of a diagnosis.

As bleak as a cancer diagnosis and the loss of a loved one can be, we (my family and I) are the lucky ones. We have experienced a privileged sort of suffering as the beneficiaries of options that are unavailable to vast portion’s of the worlds’ population. Cancer may strike randomly and be only partially preventable, but systematic inequality and the unequal distribution of resources are man-made. They are also subject to change.

That change, however, comes not just with a willingness to suffer with someone who is suffering, but with the willingness to act.

To have consequential compassion, as Paul Farmer might say.