With love and tears: My first and last memories of Dr. Paul Farmer
The last time I saw Paul Farmer was less than a week ago.I had traveled to Rwanda to teach the inaugural medical school class at the University of Global Health Equity in Butaro, a rural village. It is a place Paul Farmer helped dream and blossom into reality, a gorgeous, pristine medical campus arising in a very rural area among the beautiful hills of Rwanda. I did not expect to see Paul Farmer there. I had last seen him at his 60th birthday right before the pandemic. That was a star-studded affair in New Orleans. He seemed comfortable among the rich and famous.But there he was in rural Rwanda, teaching, seeing patients and spending time with Rwandan colleagues. He seemed more at home. He knew each medical student and gleefully came to the daily morning report — the discussion of clinical cases — with a cup of tea and a bright grin. He said he delayed his travel to Sierra Leone, where his organization Partners in Health has worked for years, because of one patient.The patient was a young man in his mid-30s, had AIDS, and an infection that arises from end-stage AIDS and a profoundly weakened immune system. The infection had ravaged his body and mind.In a span of two weeks with treatments, the patient had gone from minimally responsive to opening his eyes and nodding. Paul had cancelled his travel plans to try to see this patient through. He believed the patient would get better and wanted to be around to see it.
A first (inspiring) encounter
I first met Paul when I was 19, as an undergraduate at UC Berkeley over 20 years ago. This was before the monumental, deserved fame that came after Pulitzer Prize author Tracy Kidder profiled him in the book Mountains Beyond Mountains. He spoke in a church. The church wasn't totally packed but as he spoke you could feel the room lean in. Not because of any scholarly analysis but because he had incredible moral clarity and purpose. He had made a promise to stand with the most destitute in a community in central Haiti, struggling to provide what the Jesuits have called a "preferential option for the poor." For Paul that meant access to care we would want for our mother or our brothers. We could hear it in his voice and feel it in his presence. When I finished my residency, like so many physicians in my generation, I attempted to follow his example. I wanted to work in Haiti, where he started his organization Partners in Health in 1987. On a brief phone call, he instead enrolled me to work over the next year in rural Burundi, a place with even fewer physicians. Like so many before me, so early in my career, he made me feel as if I were making the only career decision that made sense — choosing what he called "pragmatic solidarity" alongside the poor. He conveyed with his words, the irresistibility of social medicine, where health workers aim to address the root causes of disease in its social and economic context. This work is where necessity, urgency and joy become bound together.From time to time during my work in rural Burundi, I would consult him informally on patients to ask his advice. He would reply with a couple lines at most. One time I asked him what to do with a "non-compliant" diabetic patient who was not taking her medicine. He wrote back with a three-paragraph retort. He said the onus remained with the physician to figure out what the barriers were that prevented a patient from receiving care. He wanted me to deeply understand how the health system often conspired against our greatest hopes for the healthy life our patients sought. He would not allow me to blame a patient, especially someone who lived in poverty. Over the years I have heard versions of this teaching philosophy from Paul over and over. When student doctors spoke about the need for community education, implying the need to educate patients to come in earlier for care, he reminded us that patients usually try to seek treatment but are handcuffed by user fees they cannot afford and discouraged by facilities with unavailable, underpaid staff and little equipment.When health care economists or his students speak of cost effectiveness, he asks "for whom?" Certainly not the patient whose life hangs in the balance because of an expensive treatment they cannot afford. He routinely distinguished between "price" and "cost." The price often set by companies or hospitals focused on profit – while the actual production costs of making a pharmaceutical drug or preforming a transplant were much lower, for example.
A heartbreaking week – first for Paul, then for usDuring the week I spent in Rwanda, the patient that Paul was following had an unexpected complication and got sicker and sicker. On a WhatsApp thread with many of us taking care of the patient, Paul turned over and over therapies that might be given, interventions that should be done, possible transfers to other facilities that would give this patient a fighting chance of living. The patient died. Paul was devastated. He was heartbroken. I remember thinking that this is why he is Paul Farmer. After 40 years, losing one patient was like losing the whole world. Many of us felt the urge to console him.I told him I could feel his anguish because he loved the patient in a way that we doctors often don't allow ourselves to. He replied that he had unabashedly loved that dying man and had told him so every day. I sent him a Mary Oliver poem I read with my team when we lose a patient back in San Francisco, where I live and work. She wrote:
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.