May 2016 - Rules Made to be Broken or the $16 Wager

I broke a rule today. 
Whenever I am asked why we do our global palliative care work where we do, I describe Uganda as "the sweet spot of misery." Usually met by puzzled looks, I explain that unlike many places with dire need where there are governmental, geographic, and societal forces countering sustainable progress no matter how much money and resources are poured in, Uganda for many reasons responds better to outside assistance than many other countries.  Like a lever moving a boulder, nudging things forward takes less effort with a greater effect in Uganda than elsewhere.  But it’s still a really big boulder.
 
Now don't get me wrong. Places like Haiti deserve the ongoing attempts to help their people, but our organization Palliative Care for Uganda (PCFU) has neither the vast amount of money nor access to the abundant resources needed to make long-lasting changes in those places where the lack of infrastructure and meager governmental support hampers well intentioned efforts.  The type of work we do in Uganda, and this is for many different reasons, reacts to outside efforts more effectively and sustainably than other places. Among other things, a big part of this is due to the partnerships that we have forged there. Working with motivated organizations and caring people such as Sr. Jane of Naggalama Hospital in a country with an infrastructure, albeit flawed, allows our efforts to impart a greater impact than elsewhere.   
 
When one visits rural Uganda for the first time, you quickly realize how much need there is.  Poverty and the attendant suffering are pervasive. As a non-governmental organization (NGO) there to provide aid, it is especially difficult to have to say no to the many reasonable requests for our financial help. We learned quickly that hard decisions have to be made, such as turning down groups asking us to support the building of a new obstetrical ward to replace the poorly functional and overcrowded one that exists. Or paying for a new vehicle to transport children to school.  With limited funds, we have to stay within the guidelines that we set up when we began our NGO devoted to the delivery of palliative care in rural Uganda.  Even so, it is still hard to say no. 
 
Yet, those institutional requests are not nearly as hard to turn down as when an individual has an obvious desperate need for food, clothing or a few shillings and I have to deny my own impulse to give them a handout.  At those times we have to remind ourselves over and over that PCFU’s goal is to support changes in infrastructure and educational needs, and not function as a social charity. There is a bottomless pit of need and we unfortunately have a limited amount of resources that leads to a severe imbalance between necessity and solutions.
 
I am writing this at 37,000 feet flying back from a week of work in Uganda, an emotionally draining few days of seeing some very desperate people.  The most difficult moments were seeing patients in the outlying villages, down the muddy paths, with illnesses that have readily available treatments in the developed world but not in Uganda, even at the main medical center in Kampala.  And even if they have the diagnostic technology and effective treatments at Mulago Hospital, the system is inefficient and cost prohibitive to our very poor sustenance farmers and laborers away from the big city.  
 
Every day, all day, case after case, at each stop along those bumpy roads with our palliative care team, I wanted to tap the PCFU bank account and give these people the money required to send them to the main government hospital for the "advanced" medical tests (a simple ultrasound or blood test is advanced there) and treatments, whether surgery, chemotherapy, a pacemaker; not to mention much needed food and daily essentials. But the bank account would empty very quickly.
 
When I see a patient in Uganda for the first time, attempting to make a diagnosis out in the field with no lab tests or scans available, just my hands-on diagnostic skills, I run down the list in my head of what the patient needs medically to diagnose and how to best treat them.  At the top of the list are the tests and treatments I would do if I were back in the US, but quickly I dismiss those possibilities as unavailable, and move further and further down the list until I reach the meager compromises of care that is attainable in this socially and medically hobbled area of the world. That is why I often leave the home of a grateful patient and their family as they are effusively thanking me for talking with them, listening to them, attending to them, treating them with the limited resources available, keenly aware of a wretched gnawing in my gut that I should be able to do more. 
 
Andrew* was one such patient I saw the other day.  We know him from our visit last summer when we first saw him. A 39 year old taxi driver, father of 3, he cashed in his savings to be seen at Mulago Medical Center in Kampala because of a rapidly growing swelling on his lower lip.  Diagnosed with cancer, he was told that the treatment was radiation therapy costing more than his savings would allow.  He left the hospital.  When Randi first saw him with the very large swelling of his lip, she advised that he should go back to Mulago for treatment. He cast his gaze downward and embarrassingly told her that he didn’t have the money to be treated.  Looking up, he then pointed at a bicycle hanging on the wall of his one room home. 
 
“Unless,” he said, “I sell the bicycle.  But then my children won’t be able to go to school.”
 
The bicycle still hangs on the wall, a memorial of his decision.  His cancer has now spread to his tongue and gums.  He will soon starve to death. 
 
The next day I saw Grace*, a 42 year old mother of four with an advanced gynecologic cancer. A cancer that when I examined her last week I knew would have been cured had she been diagnosed and treated had she lived in the US.  Raising her children on a meager income, her husband having left her when she got sick, she sought medical attention first at a local hospital that diagnosed her with cancer, and then told her she needed surgery and radiation therapy and chemotherapy at the big government hospital.  It would cost more than all of her possessions.
 
A common dilemma in the third world, whether to take your life savings, take away food and other essentials from your children now, in order to “possibly” save your life and hopefully be able to care for them in the future.  And that's a big "possibly", even at the best hospitals in Uganda where care can be of variable quality and effectiveness. More than a dilemma, it is a huge financial gamble with dire risks that these patients face. 
 
That day I learned from Grace that there is another option that I didn't know about.  She had gone to a bank and gotten a loan to cover the cost of the promised “curative” treatment, using all of her belongings as collateral.  She then sent her children to their grandmother in another village, and after a 2 month wait (and her cancer growing rapidly every day) she finally got the proper appointments, with the loan of 800,000 Ugandan Shillings in hand (about $250).  After several weeks of costly appointments and tests, she was abruptly told that the cancer was no longer operable, and there was no point to undergoing radiation or chemotherapy without the surgery, and she was sent home with an envelope of Advil pills for her mounting pain.
 
(Even if she could have the radiation therapy, it was recently announced that the only radiation therapy machine in Uganda became irreparably broken and another won’t be available for at least a year. Ugandans with money will go to other countries for radiation therapy.  Our patients don't have the means to do that.)
 
Sick with cancer, unable to return to her job, the loan officer has told Grace that if she doesn't keep the payments of 20,000 shillings ($6) per week, she will be imprisoned, where she will not get any medical care, not to mention palliative care, and never see her children again. (This fact was confirmed by other members of our Ugandan palliative care team with me that day, nodding knowingly how the system worked.)
 
I broke a rule today.
 
Whether due to jet lag, my own emotional fatigue, or the maternal look in Grace’s eyes in the doorway-lit 4 x 6 foot room she lives in, I reached into my pocket and started counting a few shillings that I had shoved in there as an afterthought just before I boarded our vehicle to go out on the day's rounds. I had about 200 thousand shillings ($62) on me.  I started to give them to her and she said “no.”  I insisted and she relented, saying she would only take the 20 thousand she owed for the week; pride showing in her eyes.  She would find some way to get the following weeks’ payment, she reassured me.  I forced 50,000 shillings ($16) into her hand and she started to weep. Actually heaving sobs, her hands moving up to hide her face from me.  Eventually she regained her composure.  At that point the nurse who had been standing behind us and gave out a big laugh.  In her heavily accented English she exclaimed, "Doctor, look at how she has relaxed, her shoulders have come down. We have never seen her like this; we have never seen her smile before."  I thought, these few shillings are at this moment better than any pills we could give her, better than the morphine we had been supplying her for her cancer pain. 
 
Harvard professor and a leading authority on palliative care in developing nations, Eric Krakauer MD PhD stresses that palliative care has to be defined differently in places like rural Uganda than in wealthier countries.  While wealthier countries have programs that address the socioeconomic plight of the poor, this is not the case in less developed countries where there are no such safety nets and palliative care must address not only the medical symptoms and sufferings of the illness, but there is no way that one can succeed in ameliorating a patient’s sufferings without addressing their socioeconomic situation as well. It is a lesson we are learning in Uganda.
 
With Grace finally relaxed, she started to talk about her fears, her cancer, her future, as she never was willing before. We talked for a long time.  And by the end, we had cried and laughed together.  I walked out into the sunlight and this time I felt a little less remorse than usual.  Well, if I'm to be honest, I still felt the gnawing regret that I should have done more.  But there's tomorrow and I will be in touch with the team by internet to follow up with Grace. The goal is to hedge the bet and improve the odds.  That’s what we do.
  Howard