Requiem for a Data Manager
Our data manager Orlando passed away last week at home, in diapers, breathing loudly, flitting in and out of consciousness with his family seated around him in prayer. Right prior, the size of Orlando’s fluid filled belly had decreased substantially, leading some to believe that a miracle had taken place. Then again, Orlando had eaten little over three weeks and for four days couldn’t have had more than a few desperate gulps of freshly prepared fish soup. He was literally drying up like a raisin from the inside out
It was I who brought Orlando home to die. I had watched Orlando slowly deteriorate in supposedly Liberia’s best hospital, isolated from his family because of a questionable diagnosis, nonsensical patient visitation policy and hospital location fifty minutes drive away to a family without a car. Orlando had apparently been recovering from surgery for pancreatitis.
“Interesting,” I said to Orlando’s doctor over the phone, “so Orlando’s amylase level was high?”
The promise of machines?
“No, our chemistry machine is broken,” the doctor said, “I could tell once we entered the abdomen.”
“But, it is not my impression that you can see the pancreas in the retroperitoneal space,” I said.
“Well, the structures around it were inflamed,” the doctor said, “and there was a lot of ascites.”
“Ascites?” I asked.
The doctors’ nonsensical explanations cast me immediately back to a time in Rwanda years ago to a lesson Paul Farmer taught me: Never subscribe to the myth of a referral in poor countries where you don’t know what’s on the other side. Chances are there is nothing on the other side. At the time, I had had a patient with an enlarged prostate who was going into kidney failure. He needed a hole dug through his prostate called a TURP to relieve the blockage. I told Farmer my plan to send the patient to the public hospital in Kigali for the procedure but he suggested that we try alternative methods. I disagreed, Farmer shrugged, and so with considerable effort involving a three-hour ambulance ride, making the patient’s wife and son homeless in the big city, and locating a doctor who would accept the case in a hospital resembling a train station, the transfer was made.
In a way I felt good about the act, almost congratulatory. But, then a week later on a separate trip to the Capitol, I bumped into the same man being whisked quickly on a gurney through the hallway of the radiology department. The man’s skin was a sickly gray. His eyes were closed as if resolved. His wife and son were following dutifully behind, their emotions controlled and tethered in the context of tragedy in a way that only Rwandans know how.
“Qu'est-ce qu'il arrive?” I asked the son, “what happened? Did your father get the surgery?”
“No, Ils nous ont fait attendre une semaine” the son replied, his eyes flashing momentarily with anger, “no, they have let us sit here for a week. But, now they are going to use the machine to look at his kidneys.”
The patient died before he could get to the operating table. I actually doubt a surgery was ever planned. The lesson was two-fold but at cost. First, while bureaucratic systems are complicated for most they are impossible for some. Second, technology can never make up for an absence of the heart. Who will be advocate for the stranger, the weak, the silent? For my remaining time in Rwanda, I would not transfer patients to Kigali public hospital again.
Orlando’s family did not want to initially accept him back into the house. My health assistant whom I had sent to facilitate the hospital discharge told me that the family thought Orlando was cursed. Bringing him back home would mean bad luck for everyone. I spoke with Orlando’s brother.
“I am not sure what Liberian doctors do,” I said, “but as a Taiwanese-American doctor, I listen to my patients. I work for them. Orlando knows he is very sick and that the hospitals have not been able to help him. So he wants to go home. So I want to work towards that.”
“Yes,” he said.
“I am not Christian but I know that there is a part of the bible that says you should treat others as you would want to be treated. Where would you want to be if you couldn’t take care of yourself? In the hospital with strangers or at home with those you love?”
“Yes,” he said.
“I can promise you this, I will personally make sure that a doctor or nurse comes to your house every day to make sure Orlando is comfortable. You live right behind the office. Anything comes up and you know how to reach us. We can always take Orlando to the hospital. But it might become more and more difficult to take Orlando home.”
“Yes,” he said.
Mechanical engineering 101
Orlando smelled like sweat, iodine and parched breath. Lifting him from the IRC jeep (too high) to the makeshift wheel chair (ingenious) required considerable effort. Orlando was very weak and drooped not unlike a large floured fish. A large group of us carried Orlando across the dirt driveway, up a small flight of stairs, past his quiet mother on the porch-- a living shadow from a massive stroke-- to Orlando’s bedroom with a thick ribbon of plastic already laid across a king size bed to protect the mattress.
“You want to watch T.V?” Orlando’s wife asked
“Soccer,” Orlando said.
Orlando moaned and groaned as we attempted to find him a good position. “Doc,” Orlando said, “I want you to know that I’ll be coming back to work.
“Great,” I said, “but worry about getting better first. I don’t like sick workers.”
“Doc, I’m coming back,” Orlando said.
IRC family
The days following, Orlando became more and more sleepy. Colleagues and families would recount to me the gradual swelling and doping of Orlando punctuated by moments of lucidity when Orlando would sit up to make sudden hyperbolic references to the country wide health data report he was preparing. Hearing this news saddened me. I had not been particularly happy with Orlando’s work performance. I had recently put Orlando on a performance action plan to help him focus but also to give me an objective way of firing him if things didn’t turn out. But then Orlando got sick. And then I measured his blood pressure in my office and it was 220 over 130. And then I sent him to Catholic Hospital to get his hypertension under control. And then his kidneys were failing and he became weak and he began to fill-up with fluid.
It’s a reminder to me to always remain even-keeled. To always try to treat people well, even when there is disagreement. In DC when I used to work in the Senate this way of being was for political ends. You never knew when your opponent or subordinate might become your ally or boss. In Liberia, this way of being just means that you just can’t know the whole story. And even when you do, the story may be shortened with you playing a role that you did not plan. But you do your best to follow what feels right, adjusting your orientation as you go. There is no roadmap. Or there is a road map that lands you in no place you would choose.
This could be your future boss
