There’s an entire railway network running through our bodies known as the nervous system.  We all have one and most of the time it works fine.  A bi-directional grid transmitting messages south from the brain, telling our muscles to contract and move our various parts, and north delivering signals from our skin, our organs, our senses back to Grand Central allowing us the opportunity to relate to our world.
But sometimes the trains get derailed.

He suffered in silence, no sensation from his abdomen to his toes, feeling nothing but uselessness since his fall from a high branch, breaking his spine in half.  His wife was in the fields doing “his work” as he sat propped up against a tree trunk under a suspended tarp shielding the midday sun, the starving children crying until their mother comes back to prepare them a meal with which he cannot help.
~A neighbor had called us to see him after hearing about our team while she was at the hospital visiting a friend who had received palliative care there.
 
Sometimes, the tracks deliver a message of a problem back to our brains.
 
She suffered in silence from the pain in her bones; the growing cancerous spots gnawing day and night, selfishly never taking a rest from their relentless invasion of her body.  But with a typical Ugandan shrug of “it is what it is” stoicism, she sat quietly, only her facial tightening tattling her misery.  “What good is it to complain when there is nothing to be done?”
~Her village health worker had called us to see her.  Village health workers (VHT’s) have minimal formal medical training and are community volunteers who triage health issues of their neighbors to local medical practitioners and facilities. Fortunately, this VHT had sat through a day-long presentation with 85 other VHT’s invited by our organization to learn from our Ugandan palliative care team that something can be done to alleviate the suffering of their fellow villagers.  
 
In his book, “The Nature of Suffering,” writing about the treatment of ailing patients, Dr. Eric Cassell states that success comes from not only treating the disease, but also treating the person and their unique web of social interactions including family, job, and community.  “No person exists without others; there is no consciousness without a consciousness of others, no speaker without a hearer, and no act, object, or thought that does not somehow encompass others. Furthermore, the extent and nature of a sick person’s relationships influence the degree of suffering from a disease.”  In other words, a person’s suffering cannot be treated by medicines or surgery alone.

Or as Nobel Prize winner Dr. Bernard Lown wrote, “Caring without science is well intentioned kindness, but not medicine. On the other hand, science without caring empties medicine of healing.” (The quote familiar to my patients hangs framed on the wall of my office examining room.)

But in a country like Uganda, and particularly in the rural areas where the science side of the balance is critically limited, it is the humane caring and communication that fills the deficit, and enriches the treatment.  The crux of caring comes not from medical technology, but through trained and practiced communication, a skill as difficult to learn as any medical procedure.  

Our organization, started some 7 years ago, Palliative Care for Uganda, recognized the gap between science and caring in medically under-served areas, and set out to reduce the suffering of people that couldn’t get adequate disease treatments found in more economically sufficient areas. Initially our work involved bringing supplies and palliative care expertise from the first world and adapting them to the third world. Yet the old adage, “You can give a man a fish and he’ll not be hungry for a day, but you can teach a man to fish, and he’ll never be hungry again,” made us rethink our approach. 

Over the past couple of years, we have started developing an educational curriculum in Communication and Palliative Care for healthcare workers in rural Africa.  With the help of the filmmaker that is making a documentary of our work in Uganda (Yes, believe it or not, someone actually thinks a documentary should be made about us), we have had access to video footage of patient encounters with our Ugandan team that demonstrates very clearly many of the palliative care principles that can be learned and implemented by local African teams who take the educational program we are designing based on the videos.  We rolled out a pilot program this past spring to several rural Ugandan health facilities to great success.  Our hope is to develop the course further so it can be given to many local healthcare teams to teach workers how they can implement what we do, on their own. 

And while we originally felt that the curriculum would be helpful primarily for rural Uganda, when we presented the pilot curriculum to the pan-African organization, The African Palliative Care Association, they told us that they believe that this self-study course is relevant to many countries in Africa, not just Uganda.  In fact, they have requested that we present it to its 28 member countries at the International African Palliative Care conference in Rwanda next year. 

Remember those two types of nerves running to and fro? Well, our organization has a nervous system of its own.  One is feeling the need, sensing the suffering of the people around us.  But the other drives the mechanisms of action, to make things change, to make things better, to educate more health workers, to move things forward.  With the help of our supporters, we aim to make sure that the signals function at optimal levels – in both directions - and help as many people as we can.
​
Thank you, 
Howard and Randi
Palliative Care for Uganda, Inc
WWW.PCFUganda.org

The early morning light falls upon the stack of handmade mud bricks, pieces of straw punctuating many of them, stuck there from before the clay was molded into blocks.  A crane flies overhead.
Over the cacophonous din of the morning birdsongs is the rhythmic chopping of a young woman hunched over her mound of dirt with a short-handled spade lacerating the dark red dirt still wet with the morning’s dew.  She is grateful that the air is still cool, and the morning moisture minimizes the spread of the earth’s fine red dust that will soon lay a fresh coat over everything as the air dries in the rising equatorial sun.
I’m sitting on the porch of the hospital guest house where we arrived yesterday to pilot our educational program in palliative care at yet another Ugandan rural hospital; our mission to educate more healthcare workers in the principles of relieving suffering. 
As I drink the instant coffee I’ve made with lukewarm bottled water, I’m thinking about the previous day’s events when a young woman in a bright and boldly patterned yellow and red dress, her bare feet padding up the dirt path, smiles broadly as she approaches me.
“Good morning, Suh.” As I answer her back the birds seem to have stopped to listen, yet the sound of the distant chopping never misses a beat. “I will make breakfast?”, the delightful lilt of her Luganda dialect making every word carry music of its own. “Now?”
I look down at my watch, the one I use only for my trips to Uganda, a Walmart $19.95 Casio World Time® watch with its LED picture of the world map and various other dials I’ve never mastered nor needed.  07:02:54 it displayed.  My jetlagged stomach not yet ready for breakfast, and knowing my traveling companion, a medical student assisting with our project, was still sleeping. Satisfied with my tepid coffee, I suggested to her, “8 o’clock? Is that okay?” 
“It is okay”, she smiles and walks back down the hill to what I realize now is a cooking hut and disappears behind its curtain door.  
I look around from my perch on the porch, now aware of the awakening bustle of the hillside below me, a man struggling with a heavy jerrycan doing his best to avoid spilling any of the precious well water he’s carried up the hill, a small child in a school uniform swinging her book bag at a mango tree waiting for her brothers and sisters before starting the long walk to school, and so many others walking to their plots of land to start their morning farming before the blistering sun make it untenable.  All the while, the sepia smell of cooking fires rising, showing like exclamation points across the hillside. 
And suddenly there she is again, the bright yellow and red dress, coming up the path, accompanied now by a young man wearing a torn Justin Bieber Believe 2012 Tour t-shirt, both carrying trays of food and the traditional pots of hot water and hot milk, walking, smiling, toward me.  
Could it be 8 already? Had I been lost in a reverie of early morning Uganda longer than I thought?  My Casio reassures me that I hadn’t had a petit mal lapse, blinking 07:11:14. The young man and woman put the trays down on the rickety repurposed plastic patio table next to my chair.  I thank them, they smile broadly and walk back a way down the hill a short way where she picks up a spade, he a watering can, and they hurry to their small land plots halfway down the hill.  I look again at my watch. From a nearby tree an unseen hornbill laughs. 
I should have known better.   Here in rural Uganda, time is measured by the sun’s rise from the dawn horizon, not a watch or clock.  Each day is divided not by hours, but by the chores dictated by the sun’s position and the heat of the air.  Time to go to school, feed the chickens, start the matoke, hoe the land, are set in the day’s rhythm, a different more fluid metre than the monotonous metronome of our western clocks.  Though most villagers can in fact tell time as we westerners do, mostly from the digital readout of their ubiquitous cell phones, they just choose not to be constrained by it, preferring to heed the conversation between the sun’s station in the sky and the chore at hand. 
My breakfast preparation that morning occurred when breakfast fit into the scheme of the necessary chores and events of the day, not when the Casio reads 8:00:00.  Breakfast occurs just before the work in the field must start, for good reason, or else the heat of the day and the dryness of the soil forces the necessary work to halt.  I drank my tea and ate my sweet mango, slowly savoring my breakfast. 

April 25, 2018
Nakaseke, Uganda

Glaring Similarities
Howard Eison MD
I’m in Uganda today.  Surrounded by friends, colleagues, and so many patients. Sitting in my chair, at my desk. The light shifts, I look out the window and it’s snowing.  Really coming down.  Those big flakes, sticking to the railing of the fence surrounding the deck.  How much snow has fallen, 5 inches, maybe 6?  I redirect my gaze back inside and look again at my laptop.  The picture of 4-year-old Willie high-fiving me, his big belly stretched tight with fluid and tumor, a momentary smile caught by the camera, in the blinding equatorial sun. 
I spend every day in Uganda. Even though it is 7000 miles away.  Because anyone who has been there, anyone who has done the type of work we do, knows that Uganda gets inside of you and you can never be away from it.  Whether it is with little Willie and his shy smile, or old Suleiman, lying on a woven mat, reaching his hand up to shake mine, because that’s the only part of his body he can still lift on his own due to the ravages of disease and hunger.  Mustering the strength to say thank you.  For what little we can do for him.
Uganda sits on the equator in East Africa, a country about the size of Oregon (but with 10 times the population), once called the Pearl of Africa by Winston Churchill. *   It’s indeed a beautiful country, not so much by the landscape, but by the people we have met there.  No matter what worries they have, what troubles they carry, the Ugandan greeting is always, “You are welcome.”  Hospitality, in the Ugandan style, is a fresh clean mat laid out onto the floor on which to sit, always brought for a visitor even if the family must sit on the dirt floor. 
People who know us know we carry Uganda with us.  Many don’t know why.  Many don’t know much about Uganda and what draws us there.  I can tell them facts, like, “You know, if you were born a Ugandan instead of in the US, your lifespan would be 25 years shorter.”  Or “You’d make 97% less money if you worked in Uganda”, or “Your children would be 10 times more likely to die in infancy.” Harsh statistics that make us all very uncomfortable.  Certain to cut conversations short.  And we don’t want people to back away when we tell them about why we go to Uganda, so we don’t tell them these things, certainly not at the beginning of the dinner party. Maybe after a couple of drinks.
But it’s not the differences between countries that draw me to do the work we do, rather it’s the similarities between us that absorb me.  A cough, a pain, or breathlessness are all blind to where we live, and who we are.  Worries that the headache or dizziness might be a sign of something serious. Something all people experience no matter where we were born, what we do to survive.  That we fear that an illness will debilitate us, perhaps make us unable to earn a living, care for our families, is the same in Uganda as it is here in the US.  Weakness, nausea, and worry know no culture or government.  And above all, pain.  Pain ignores geopolitical borders or socioeconomic status, we all experience and fear it the same. 
But the main difference between “us” and “them” is access to relief.  The ailments and the misery are something we all share.  To be free of symptoms is something we all strive for.  To gain comfort; that is the great divide.  There is the inequality born of chance.  
I look out the window again and the snow has now stopped.  It’s really pretty, all clean, but the afternoon sun hurts my eyes with its silent glare.   I turn toward Uganda.
__________________________________
*Winston Churchill, 1908 “For magnificence, for variety of form and color, for profusion of brilliant life — bird, insect, reptile, beast — for vast scale — Uganda is truly “the Pearl of Africa.”

It is when I have just returned from Uganda, at least once the jet lag burns off, that the reason I go to Africa becomes evident.  Not while I am there, and certainly not in the unsettled time leading up to my trip; those weeks when I question most why I am going.  It is when I resume my “normal” life, my real life, my “day job” when the reason I have just spent a month eating bad food, riding along bumpy dirt roads for hours to see one patient, and feeling adrift in a medical world of uncertainty becomes suddenly clear to me, like the condensation on the windshield evaporating when you turn on the defogger.  It is when I return from the humid equatorial climate of Uganda that I finally see where I’ve been and why.
 
So many people who greet me upon my return offer up their own understanding of why I go:
 
            “It must feel really good to go there and help.” 
It does. But that’s not why I travel 7000 miles to a remote country.  There are so many people to help right here at home.
 
            “It must be so completely satisfying to go there.” 
Sometimes, although a lot less than you’d imagine.  But I don’t tell them that.  I just smile and nod; avoiding a discussion about the frustration I feel that there isn’t more that I can do for the patients I see there.
            “The people you see must really appreciate what you do.”
They do, but again, not why I go.
 
“We have a new patient to see,” says Prossy, our head nurse, as our 9 member team squeezes into our 7 passenger car, leaving our base of operations at the rural hospital we stay at while in Uganda for our daily trip into the outlying villages to make our palliative care rounds.  “Is it far?” I ask, knowing that the roads will be deeply rutted; our aged vehicle’s worn out suspension groaning with every unavoidable bump.  “Yes”, she replies.  How far?  “An hour.”   “An hour!” I exclaim, trying unsuccessfully to remove the American whine in my voice.   “OK. A half hour,” she smiles. 
 
After an hour and a half of rocking over narrow mud roads, nudging stubborn cows with my horn and bumper, dodging trucks overloaded with sugar cane careening toward us, and as courteously as possible allowing women balancing oversized bundles on their heads to climb up the embankment to allow us to pass, the worn out springs of the driver’s seat imprinted on my butt, we drive up to the patient’s home, a small mudbrick hovel surrounded by a few sprouts of maize, a couple of coffee bushes, and some chickens running amok. There, sitting very quietly on a bench in the dirt yard, drawing hard on his breath, is young Julius, fifteen years old, head hung low, staring at his bare, swollen feet.
 
My jaw tenses, my stomach twists when I look at the boy.  I walk up close to him, his loneliness becomes mine.  The discomfort of realizing how very sick he is and how much he is relying on me to relieve his suffering unnerves me.  Me, a data driven, tech-addicted doc from the west, stripped bare of his laboratory tests and scans, struggling with only my senses and my knowledge to find my way in the barren rural Ugandan healthcare landscape.  No blood tests, scans, or specialists pointing me toward a diagnosis, suggesting a treatment.  Feeling exposed, dispossessed of my comfy blanket of technology, I sit down on the bench. This is what it means to me to practice in an underserved, undersupplied area of the third world.  
 
Abraham Verghese, best known as the physician author of the bestselling novel Cutting for Stone, is also known among doctors as a brilliant diagnostician and a vocal proponent of the lost art of the doctor’s hands-on physical examination of patients.  He has coined the term “iPatients” decrying the deterioration of the doctor-patient relationship through the ever increasing use of electronic medical records and technology instead of the humanness of personal interaction.  In a 2011 New York Times Op-Ed “Treat the Patient, Not the CT Scan”, he wrote, “Rituals are about transformation, the crossing of a threshold, and in the case of the bedside exam, the transformation is the cementing of the doctor-patient relationship, a way of saying: “I will see you through this illness. I will be with you through thick and thin.” It is paramount that doctors not forget the importance of this ritual.” 
 
I was trained in the day when CAT scans were a new and rare commodity, MRI’s were only a sketch on an engineer’s table, and computers were big as rooms and required someone called a “key punch operator” rather than the click of a mouse to make them work.  Some people, including my children, both newly minted physicians, might consider that educational background a disadvantage.  But sitting on that bench in the dusty air of rural Africa, I thought of how fortunate I was to have been forced to rely on my hands, eyes, and ears, rather than radiation, blood, and microchips to do my diagnostic testing.  Humbled, questioning my skills, at that moment I wished that I could make Abraham Verghese appear to help me figure out what was wrong with young Julius. 
 
Back in the US, Randi and I recently met with the filmmaker doing a documentary about palliative care in rural Uganda and she was telling us how she viewed what we did there.  Lucy explained to us that the way she sees it, when we are there, we return to the “heart” of medicine.  Stripped of all the modern bells and whistles, in rural Uganda we become doctors from a bygone day, spending great amounts of time patiently listening to patients, talking with patients, examining the patients, looking for clues to their diagnosis, trying our best to understand what was ailing them as people, as a part of a family and a community and to figure out what we could do to help them best with our limited means.  
 
It’s like being in a dark movie theater for a matinee and walking out into the afternoon sun, the light is so much brighter.  Coming back to the US after being deprived of all the medical data that I typically rely on to get to the crux of my patient’s problem; my low-tech physical diagnostic skills are sharper, more sensitive to picking up the subtleties.  I see each patient more clearly, I hear their complaints more sharply, and I feel their discomforts more personally.  Returning to my tech laden medical practice, I find myself ordering fewer tests, calling fewer consults; I am more confident in my abilities as a physician to minister without the crutches of data.  Sure I still use tests when I’m back to confirm my instincts; Uganda brings me not only confidence but humility in my abilities to care for people.  But my perspective shifts as a result of being in Uganda, and the relative importance of what is available and what is necessary is redefined when I return.  Just like the more you use a GPS in your car the harder it is to find your way when you don’t use it, as I reacclimatize to the computerized medical world, I lose my more well-honed sense of direction until I return to Africa.
 
It is in the weeks that I return that I realize why I have gone and why I will return.  Sure it is satisfying to get an email from our team leader that young Julius is doing so much better, happier and more active, since being on the heart medications (and reading the schoolbooks) we brought him.  And of course it makes us happy to hear how many of the patients we saw are asking for us and tell our team to thank us yet again for our help.  But it is in the weeks following my return that I realize why I keep going back despite all the challenges.   Simply, it makes me a better doctor to my patients.   All my patients, both in the US and Uganda.  And that’s good for everyone.
 
Howard
August 2016

 *Core -  from Latin cor ‎(“heart”); or from Old French cors ‎(“body”)

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 
 
 
___________________________________________________________________________________
*The names and ages have been changed to protect the privacy of the patients. 

​“What do you do with so many things?”  At that moment, our kitchen was the site of an unsettling collision of two worlds.  Sitting across from me was Sister Jane, the administrator of St. Francis Naggalama Hospital, our base of operations in equatorial Uganda, sipping tea on a snowy Connecticut day.
 
“Sister, what do you mean?” I asked.
 
Sister Jane had just arrived at our home after a 22 hour journey from rural Uganda on a three city visit to meet with American donors and suppliers to her small hospital. She looked around the kitchen.  “In Uganda, we only have what we can use. Why do you need all of this?” 
 
Now most of you know that Randi and I are not extravagant people, but at that moment as I followed Sister’s gaze I was suddenly embarrassed by our modest sized kitchen, twice the size of a mud hut that would house an entire Ugandan extended family.  “If there is no use for it, we don’t have it”, she said in her calm voice as she took another sip of tea.  I now understood why Sister arrived at JFK in only her thin cotton habit and sandals despite my warnings of record cold and serial snowstorms.  And living in a country where less than 5 percent of the rural population has access to electricity, even our simple toaster must have seemed an extravagance to her at that moment.  
 
Sr. Jane was here to discuss what she did need, bare necessities to provide basic medical services to the quarter of a million people her hospital serves, as well as a chance to see for herself the healthcare systems that  Randi and I had tried to describe during our past visits to Uganda.  Uganda’s rural health system is not primitive, but in many ways decades behind where we are in western medicine.  But the Ugandans are ambitious to move quickly to a more modern system that will provide higher quality and more efficient care to their population. 
 
Randi and I established “Palliative Care For Uganda, Inc.”, a non-profit organization to provide medical and administrative expertise, staff education, and medical supplies to rural Uganda with particular attention to improving quality of life and amelioration of suffering in the acute and chronically ill.  And with the help of generous donations, we are seeing the growth of programs.
 
Some examples of PCU’s work to date:
 
Naggalama Children’s Benevolent Fund – No child shall be refused treatment because of their family’s inability to pay.  In a country where no insurance, government or otherwise, exists, many children don’t have access to lifesaving treatments due to lack of money.  Since the establishment of this fund by Palliative Care for Uganda, several children have received care, and at very little cost.  For example, a weeklong hospitalization including IV antibiotics for a life threatening illness often costs less than $50 total, but many families would not bring their children in due to cost concerns.  Now they come and the children are treated successfully.
 
Hospital Rooms Upgrade – Six bedded rooms are the norm in Ugandan hospitals, affording no privacy.  With funds from Palliative Care for Uganda, simple curtains on hanging rods were installed in some of these multi-bedded wards to encircle each bed to allow the patients privacy during their stay; a low-tech intervention making the healing process much more humane.
 
Palliative Care Outreach – Many people in need of medical care can’t make it to the clinics or hospital.   We have discovered that there are countless people, mostly subsistence farmers not counted in any government statistics, outside the villages and cities that have no access to healthcare.  The Palliative Care Outreach team, consisting of a nurse, a nurse assistant, and a pastoral care provider with support and training from Palliative Care For Uganda now go out to the villages and beyond to attend to the acutely ill and chronically infirmed, young and old, to treat their illnesses and ameliorate their symptoms in their own homes.  When necessary, they are transported to the hospital for inpatient care.
 
Medications and Supplies – In the past, we have partnered with Americares to bring in medications to Naggalama Hospital and the Palliative Care Outreach team.  However, all of these supplies must be hand carried in our luggage from Connecticut to Uganda which limits the amount that can be brought.  With donated funds, Palliative Care for Uganda is now able to purchase medications and supplies from the Ugandan government suppliers so they are obtainable throughout the year and without transportation costs.  There are no overhead charges  for this or any of the other programs sponsored by PCU, all money directly used for programs.
 
Educational Programs for Staff - Since the establishment of PCU, two continuing medical education programs in palliative care have been held for the hospital staff on the grounds of the hospital and several more are being planned to bring the latest medical knowledge to the doctors and nurses there.  Through this education, systems have been implemented to improve palliative care for hospitalized patients with relief of their suffering during treatments or for the chronically ill to reduce their discomfort.
 
Coordination of Care with the Villages
Meetings are ongoing with several of the surrounding village health teams and community health workers to make them aware of the services now available through Naggalama Hospital and the Palliative Care Outreach Program.  Feedback has been excellent.
 
Internet and Wi-Fi
Despite several obstacles to bringing consistent and dependable internet to the hospital in its rural location, we are finally seeing some progress toward partnering with a telecom company in Uganda to bring internet and information technology to Naggalama Hospital.  This is a major priority for PCU as it will greatly enhance staff education and development and has the potential for bringing state of the art medical care through telemedicine and internet based learning and communication.   
 
Of course, there is always much more that needs to be done. The current number of trained medical staff is inadequate, the physical facility is far from able to handle the needs of the community, the chronic lack of medications and supplies, and inadequate modes of transportation to get staff out into the villages or patients back to the hospital; all are impediments to basic quality healthcare.  Randi and I are addressing all of these needs and working on ways to mitigate these obstacles to better healthcare.
 
During her visit, when we took Sr. Jane for a tour of Norwalk Hospital, it wasn’t the state-of-the-art CAT scanner, the computerized medication carts, or the flat screen TVs in the single bedded rooms that amazed her.  “Look at that.  Linens on every bed!” she exclaimed. Randi and I recalled that in Ugandan hospitals, if you want linens on your bed your family must bring them, and even launder them by hand during your stay.  Thinking back to sitting in our kitchen, and Sister stating simply, “We don’t have what we don’t need” I realized that we take for granted even the simple things that are needed and we promised Sister that we would provide her with linens. 

He looked like a frail, wizened old man, right hand grasping his chin, his eyelids appearing tightly closed in deep contemplation but actually sewn shut, a turban of rags wrapped around his bald head.  But Ibrahim is a 9 year old boy, wise beyond his years, having endured a sagacious elder’s lifetime of suffering.
 
We first saw him sitting on the straw mat in his homemade brick and mud hut in rural Uganda, in a shaft of sunlight, his face passive and turned toward the warmth.  Yet his tense stillness and the slightly too taut clench of his fingers betrayed the immense pain he was hiding from the mzungu doctor from the US visiting that day.  Withered and weak from not eating for weeks, unable to walk on his spindly legs, his grandmother’s eyes glistened with concern and angst.  What could the palliative care team do to steel her little Ibra from his continual suffering? What could she say when he asked “Grandma, why doesn’t God take me from my suffering?
 
As the doctor kneeled next to the boy, the palliative care team recounted the few lines of medical history they had obtained.  At one year, the little boy started having problems with one of his eyes, and with no relief from drops, the doctors in the government hospital removed the eye.  By age 3, the other eye was removed.  No reason given.  And now he had growths on his scalp that were diagnosed as cancer.  “That’s all we know?” asked the palliative care doctor taking the boy’s bony fingers in hers, his skin coarse like sandpaper and speckled with a starry sparkling like flecks of mica in a granite rock.  “Yes, that is all we know.”
 
Turning her attention to the boy’s scalp, she watched grandma peel away a thin layer of gauze revealing cotton batting stuck to the lumps underneath.  With as much care as possible, the palliative care nurse moistened the cotton and teased away the fibers of cotton from the weeping lesions on Ibra’s head. With every gentle tug, a tightening grip of the boy’s hand on his chin, a tensing of facial muscles, and a muted whimper.  Trying to distract him from his suffering, the doctor asked Ibra whether his friends ever come to play with him.  “They used to,” he said. “We would pretend we were building with bricks, but they don’t come anymore.  Now I’m mostly alone except for the thoughts in my head.”    When each shred of embedded cotton and gauze had been dissected away, both the doctor and Ibra sighed as the full impact of what had laid beneath the crusty dressing was revealed.  Tumors the size and color of rotten potatoes had burst through the boy’s scalp, weeping and draining, one invading from behind his right ear piercing through, pus oozing forth from what was once his ear canal. 
“Ibra,” the doctor asked,” how are you?”  A squeaky voice replied softly and swiftly, “Fine.”
 
Ibrahim was transported by the Palliative Care team to the nearby rural hospital in Naggalama the next day, his grandmother dressed in her finest clothing for the bumpy dirt road ride.  Ibra, in a too loose polo shirt and shorts, with a bright orange terry cloth hat for the outing, winced with each rut in the road the van navigated and explored his surroundings with his hands.  Soon, with IV in hand, he was on the pediatric ward in the corner bed, in a section removed from the other sick children.   Whether the charge nurse was keeping him from the disruption of the other families and children, or protecting the other patients from the sight of this alien-like child, the palliative care doctors didn’t ask.  But in his corner bed, with grandma kneeling on the floor mat at his side, he received his first dose of oral morphine, a test dose, intentionally lightly dosed, to see the response by his wasted little frame and to reassure even the palliative care team of the efficacy and safety of using morphine for this young, frail boy. 
 
A smile. Not a wide grin but a little smile as the morphine chiseled away some of his pain for the first time.  The next dose even better, and with some oral numbing medication, Ibra greedily slurped a box of mango juice after almost no food for weeks.  A happy grandma.  Eyes gleaming, this time with tears of happiness and not dread.
 
And now time for the dressing change.  Pre-medicated but wary, Ibra heard the doctors come closer, the supplies gathered at the bedside. Grandma looking on with apprehension, Ibra started clutching his chin in what we came to know as his stoic pose of resolve to hide suffering and pain.  The cotton teased off the rotten potatoes, shreds and threads scraped from the crevices of the tumors, Ibra’s hand gripping his chin tighter, his eyebrows furrowing with each peeling away of the stubborn cotton. 
 
Two weeks before, prior to leaving, the US doctors had gone to the Americares Medical Outreach website as they do every year before their trips to rural Uganda.  Like one of those reality TV shows where people would open a storage unit not knowing what they had won, the website would reveal what was available for the doctors to carry with them on their trip this time, different items each time they logged on.  Picking and choosing from the available medications and supplies, always having to decline certain necessary items due to weight and space limits, the doctors would debate back and forth what would be most useful and would fit in their luggage.  Never knowing what patient problems would be encountered on each trip, there was always a balance of guessing and gambling on what would be the most helpful on the trip.  Antibiotics, diabetes and blood pressure medicines, those were easy to choose, small and definitely desperately needed, they always found their way into the doctors’ big duffels.  But bulky items had to be chosen much more prudently.  Do we have room?  Is this too heavy?  Will they be able to use it? 
 
This year, for a reason they can’t remember, the US doctors decided to take Xeroform gauze, a Vaseline and iodine impregnated dressing, and Kerlix gauze.  Never having a need for this type of wound covering on past trips, they decided to bring several boxes of it on this trip.  What a lucky choice!  The Xeroform dressings, heavy though they were, and the Kerlix gauze that was light and compressible enough to shove into our bulging duffle bags turned out to spare Ibra from one of the worst daily moments of his many tortured days, the dressing change.   With the cotton removed, the raw scalp gently cleansed, the soothing Xeroform dressings were applied with care and wrapped in a turban of Kerlix.  Crowned with his bright orange terrycloth hat, the young man’s body relaxed as he lay back in his bed to rest from the ordeal. 
 
The next day’s dressing change was mostly free of pain, as the Xeroform was easily removed and fresh pieces were laid gently over the tumors.  Barely a grimace, Ibra sucked down a mango juice while the procedure was carried out, his grandmother studying the process of trimming and fitting each piece to insure proper coverage and minimal waste of supplies. By the following day, she expertly copied the doctors’ technique and from then on managed her grandson’s daily dressing changes with loving care and without fault.
 
Like so many others in rural Uganda, Ibra’s cancer is so advanced that it cannot be cured, but the palliative care team is doing its best to help prevent and treat his suffering. Ibra left the hospital a week later, his pain controlled, his appetite improved, his strength returning with his replenishing reserves.  The van dropped him off, and he got himself out of the vehicle’s seat, and walked through the rain, only lightly holding his grandmother’s arm, back to his mat.  She carried a bag of Xeroform and Kerlix; Ibra carried the bag of plastic blocks we had gotten him so he could build the structures of his imagination. 

 
Howard Eison MD
Randi Diamond MD
Palliative Care For Uganda

As the Days Are Getting Shorter
The weather in Connecticut was nice this weekend, and as autumn is rushing at us sooner than we want, I went looking for any excuse to avoid writing this letter to my patients and friends about my upcoming trip to Africa.  Desperate for distraction, I spied sitting on top of my “procrastination pile” of unread books, Being Mortal, by the surgeon/writer Atul Gawande.  Not exactly light reading for a summer’s day, but something that holds great interest to my wife and I as directors of “Palliative Care for Uganda, Inc.,” our non-profit that develops and sustains the medical specialty of palliative care in rural Uganda. 
And an opportunity to avoid writing this letter on a sunny day. 

Although my wife Randi Diamond MD has been a professor of Palliative Medicine for some years now, it is a specialty that was until recently kept in the dark corner of the medical field.  With early accusations of “Death Panels” and other misunderstandings of what palliative care doctors do, it is only in the past 1-2 years that the specialty is finally moving to the daylight of medicine, not only as a means to address many of the economic healthcare issues facing our country, but as a much needed cog in the complicated gears of patient care.  

Simply put, palliative care is specialized medical care for people living with serious illness. It focuses on relief from the symptoms and stresses of a serious illness—whatever the diagnosis or prognosis. The goal is to improve quality of life for both the patient and the family. It is typically provided by a team that may consist of a palliative care doctor, nurse, social worker, and spiritual counselor who work together to provide medical treatments and emotional support to alleviate suffering and improve the quality of life of the patients and their loved ones. It is appropriate at any age and at any stage in a serious illness.

Further evidence of palliative care’s movement to the forefront are the increasingly common newspaper articles, the recent announcement that Medicare will reimburse doctors to have discussions with patients about their goals of care in chronic illness, and Dr. Gawande’s book sitting on the top of the NY Times Bestsellers list for the past 6 months. 

In Being Mortal, Dr. Gawande addresses society’s challenge of our increasing ability to extend life, how we are now commonly faced with finding the difficult balance between quantity of life weighed against the quality of that life.  That balance is what palliative medicine addresses for the individual when faced with a serious illness.  Through medications, techniques and procedures, and most of all, discussions, palliative care providers help an individual and families make the personal decisions necessary but heretofore ignored.   

 Susan Block MD, the chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute has said, “These conversations may cover end-of-life topics, but they’re not only about end-of-life. They really focus around how people want to live, and what their priorities are, what’s important to them in terms of living with a progressive, serious illness.”

 Gawande’s book reports on a landmark study done by Dr. Block a few years ago.  Half of the 151 lung cancer patients studied received usual care from their oncologist, while the other half received the same care but also were cared for by a palliative care specialist who addressed their physical symptoms such as pain or breathing difficulties, as well as having ongoing conversations with the patients on their hopes and fears.  Dr. Gawande, who credits his own awakening to the benefits of involving palliative care specialists with his own patients to what he has learned from his palliative care colleagues, writes, “those who saw a palliative care specialist stopped chemotherapy sooner, experienced less suffering, and they lived 25% longer.”  

 Oddly, Uganda is in some ways ahead of the U.S. when it comes to palliative care.  Largely because of the hindrances to providing timely and curative treatments for many illnesses that are adequately dealt with here, the Uganda Ministry of Health has been supportive of palliative care for many years now. The government there realizes that through the use of palliative care techniques, the reduction of suffering and an improved quality of life in these people can be the most important component of patient care.  

But efforts by the Ugandan government have been focused almost entirely on the urban centers of the country where only 15% of the population lives and 70% of the healthcare providers of the country work.  Randi and I, through Palliative Care for Uganda, focus efforts on the rural populations, where access to medical care of any type is difficult and so palliative care is crucial.  

So whether I call it procrastination or “personal palliation”, my time reading Dr. Gawande’s book this past Sunday was more than relaxing.  After reading, it became clear to me that my letter to you of my upcoming trip needed to help you understand why Randi and I go and do what we do.  

Weebele (Thank you)
                                                                        Howard


Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.” 
― Atul Gawande, Being Mortal: Medicine and What Matters in the End