Palliative Care for Uganda – An update on our work in Africa
 
The ibis, cloaked in his dark, feathery coat, struts across the lawn behind the Naggalama Hospital guest house, challenging me with his black eyes and scythe-shaped beak, reminding me of the illustration of a medieval plague doctor that hangs in my office. With the distant groan of rainy season thunder, he flaps his way to the shelter of a nearby tree as I sit here watching the downpour and reflecting on our current travels which will soon come to a close. After a year-long pause due to Covid travel restrictions, this is our second trip in 4 months back to Africa.
 
I haven’t written in quite some time, my pen quelled by Covid even though our work in Uganda has continued. Long overdue, it is time to let you know how we weathered the pandemic storm and where our organization is headed. Coming into our 10th year of work, we have accomplished so much of what we initially set out to do, but as time has passed, our mission has taken on more breadth as needs came into focus.
 
Palliative Care for Uganda, Inc., (PCFU) the organization we started nine years ago to support palliative care services in an under-resourced area of rural Uganda has grown from a small NGO intended to help a 3-person team of Ugandan healthcare workers at a 100-bed hospital into an organization supporting programs that are poised to be used throughout Africa and even in countries in the Middle East, Far East, Europe, and North America.
 
Palliative care (PC) is a medical specialty whose focus is to reduce suffering in patients with life-changing and life-limiting illnesses and aims to improve the quality of life of patients stressed and distressed by the symptoms of their illness and the medical treatments they may be undergoing.  Given the medical, pharmacologic, psychological, spiritual, and socioeconomic aspects of palliative care, mastering the skills to deliver quality palliative care requires specialized education. Not surprisingly, there are not enough doctors and nurses who have been properly trained to provide palliative care to suffering patients, especially in the developing world.
 
In Uganda, only 11% of those who require palliative care have access to it.  When we first started PCFU, our mission was to help Naggalama Hospital in rural Uganda to build a self-sustaining Palliative Care program with one palliative care trained nurse and 2 assistant nurses to serve a single district of 300,000 people. 
 
Along the way, there have been many challenges, especially during Covid when the president of Uganda put the country into lockdown, prohibiting vehicular travel, closing all schools and many businesses for almost 2 full years.  The economy crashed, healthcare and consequently health suffered.  Poverty, as abject as it was prior to the pandemic, became even more pervasive.  Yet the Naggalama PC team made adjustments to their routines in order to continue to serve those in dire need despite many threats and obstacles. Over the years, this little PC Team has cared for well over 400 patients who would otherwise not have access to this essential care.
 
The Naggalama PC team is now recognized by many palliative care organizations. as a model for sustainable delivery of palliative care in rural Africa. The team leader, Prossy Nafula BSN, DPC is now consulted by others for her expertise in rural palliative care program development in order to help other organizations start their own PC programs in under-resourced areas.
 
Just this week, The St. Francis Naggalama Palliative Care program was recognized at the 7th International African Palliative Care Conference for “Contribution to Improving Access to Palliative Care Services in Africa”, this little hospital in rural Africa sharing the honor with other awardees that included large national and international service organizations. 
 
While the pandemic raged, and we were unable to travel to Africa, PCFU, aware of the need for more trained providers of PC, used the time to develop with a documentary filmmaker a video based educational curriculum to help train more healthcare workers in skills needed to provide PC to other rural areas, not just in the Mukono district where Naggalama Hospital is situated.  We forged partnerships with other African based PC organizations, to help disseminate the curriculum not only to educational institutions in Uganda, but to other countries in Africa, free of charge.  Randi, PCFU’s medical director, has recently been appointed Visiting Faculty at the Institute of Hospice and Palliative Care, the educational arm of Hospice Africa Uganda, the major source of PC education across Africa to help train PC educators in the use of our video-based curriculum. Additionally, in an effort to expand PC education through digital modalities, a necessity in the age of Covid, PCFU has been engaged to provide educational content for monthly webinars through the African Palliative Care Association to countries throughout Africa and the world, all free of charge.
 
As you can see, as PCFU approaches its 2nd decade, our mission has significantly expanded.
We have grown from a local organization serving a small community hospital to a developer of educational program providing content for PC education internationally. Moving forward, the core of PCFU’s efforts will encompass further development of PC educational curricula, and efforts to broaden distribution through partnerships with larger PC institutions including Hospice Africa Uganda, Palliative Care Association of Uganda, and the African Palliative Care Association.  Self-sustainability of programs is paramount to their design.  
 
There is no cost to users of our programs. All that PCFU does, both patient care and education, is totally donor supported, with every dollar going to patient care and educational programming.  Administrative costs are covered entirely by our voluntary board of directors.  Thank you to all of our past and future supporters; you are what makes all this happen.
 
As we emerge from the pandemic and move into the future, we continue to actively explore and develop new ideas to further enhance access to palliative care in Africa:

• A formal Global Health Palliative Care track within a US medical school to train US physicians, nurses, social workers and chaplains, philanthropically supported.
• A Stroke and Spinal Cord Injury Rehabilitation Program at Naggalama Hospital in Uganda
• An Inpatient Hospice and PC unit at Naggalama Hospital, something relatively unheard of in Africa, accepting referrals from other hospitals and districts.
• Tuition Support for PC education for more nurses and doctors to become certified specialists in PC.
• Development of technology-based learning modalities that work better in rural areas.
• Expansion of the Naggalama PC team’s reach to a wider geographic area due to great demand.
• Support for bringing Ugandan physicians and nurses to the US to learn from their PC colleagues in the US and broaden our understanding of palliative care needs in the developing world.

 
Finally, with all of these changes, we realize it is time to rebrand PCFU to reflect its broader purpose.  Within the coming year we will announce when the new name Palliative Care and Education, Uganda Inc.  (PC&ED Uganda) comes into effect.  While we will never neglect our initial task to help relieve the suffering of individuals, we aim to fulfill our expanded mission to train more healthcare workers in the community to provide PC services to more people who are suffering.
 
As the storm passes and the sun comes out, the ibis lands softly back on the lawn and looks at me as if to say “I see we are both still here.”
 
Howard and Randi
WWW.PCFUganda.org

Many of you have been asking about how the pandemic has affected our work in Africa and I am happy to report that we continue to make strides in providing palliative care to those in need despite the many hurdles imposed by Covid.  Until recently, we were restricted from traveling to Uganda, but despite that, we stayed in constant touch with our African partners to help with the increasing challenges there during the pandemic, doing the best we could from so far away.  
 
Here at home during the lockdown, we continued to work on our comprehensive educational curriculum to train on-the-ground healthcare providers (nurses, doctors, community health workers) in techniques of palliative care that can easily and inexpensively be employed to relieve the agony of chronic and life limiting conditions in the poor rural communities in Africa, and around the world.  The uniqueness of this curriculum, unlike any other, is that the education is done with video clips from actual unscripted patient interactions out in the field.
 
We are happy to report that we just returned from our first trip back to our home-away-from-home in rural Uganda after over a year of not being able to travel, and were impressed by the work being done there by our team.  Despite being restricted to traveling to patients in the remote areas due to the country’s lock-down, Nurse Prossy and the team carried on with a “pop-up” palliative care clinic they set up at Naggalama Hospital for patients and relatives who could travel by foot or bicycle. If the patients were unable to travel, relatives would come to get counseling and medications for their loved ones.  Mobile phones (ubiquitous even in the poorest villages) were a valuable tool.  Fortunately, now that the restrictions to vehicular travel have been lifted, our team is back out in the field delivering critical care and supplies to those in need. 
 
While seeing our amazing palliative care team at Naggalama Hospital was special, one of the big highlights of this trip was presenting the palliative care video-based educational curriculum to the "Institute of Hospice and Palliative Care in Africa," a center for higher learning offering diploma and degree level programs to doctors, nurses, and healthcare workers from across the world.  IHPC is very excited to begin using our program, which we will be providing them at no cost, so more can be trained in the principles of palliative care.  
 
And as our team’s reputation has spread, they are now getting calls from other districts (counties) requesting their services. Pre-Covid, the team saw patients only in their own Mukono District, traveling the muddy rainy-season roads to see as many patients as possible, but now because of the dire effect of the pandemic on the whole area, they are answering calls from surrounding districts, some many kilometers away, doing their best to serve a much larger catchment area of about a million people as the only palliative care team in the area.  A huge challenge, but one they are dedicated to meeting.  Obviously, we hope to develop and financially support their efforts during this very critical time.
 
And finally, the documentary “Oli Otya – Life and Loss in Rural Uganda” by award winning filmmaker Lucy Bruell, that follows our work in Uganda is now being used by several U.S. undergraduate universities, nursing schools, and medical schools to enhance the teaching of their students in a wide-ranging list of courses including medical, public health, journalism, film, and ethics, to name a few.  
In addition, the film has been garnering accolades at film festivals worldwide, most recently the 2021 African Film Festival.  Congratulations to Lucy! Film link: https://www.oliotyafilm.com/ .
 
To see pictures from our latest trip, go to our website:
 https://www.palliativecareforuganda.org/latest-news.html
Thanks for all of your support. We couldn’t have done it without you!
Howard

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 
 
 
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*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.