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

 

As he smoothed the plaster on the gleaming white cast, the orthopedist smiled at his latest sculpture.  The patient’s story was that because he had a little too much to drink, he found himself on someone’s plantation picking a banana, thinking it his own banana tree.  The plantation security team dealt their justice swiftly without testimony.   Not that the pieces of the banana juiced man’s story fit properly, but then neither did his left humerus bone and 4th metacarpal, with jagged edges meeting jagged edges at right angles instead of end to end.  And what in the end needed to get straightened out were the bones more than the man’s story; the police would handle that intervention.

When he was brought in to Naggalama, the bone-setter Kevin felt it was best for the banana man to sober up before consenting to care, but in the meantime sent him to the cashier to pay for the necessary x-rays.  Clearly the left humerus was snapped, that was obvious by the patient appearing to have two elbows on the left arm, one in the usual spot, and one 5 inches above the one he was born with.  The left foot was puffed out more than the right, and both hands were hugely swollen like boxing mitts.  So the patient was sent for 2 views of the upper arm, both feet and both hands to be x-rayed.

A few hours later, when hangover was overlapping inebriation, Kevin was smoothing the sculpted cast on the left arm from left shoulder to elbow, and another from elbow to the left boxing mitt, the alleged thief snoring from banana liquor anesthesia. But what about the right hand? The feet? I asked.  Dr. Kevin finished smoothing, almost polishing, the plaster and explained matter-of-factly that the because of the cost of all the x-rays, the patient chose one view of the upper arm and a view of the left hand and left foot because that’s what was hurting him the most.  I picked up the x-ray again and held it up to the window.  The severe humerus fracture was obvious as was a left hand fracture.  The left foot x-ray was normal.

“But couldn’t the right hand be broken as well?” I asked, recalling that it had looked like he had had equal sized boxing mitts on? Dr. Kevin ran his hands down the cast one last time, now smooth and cleaner white than anything else in the small procedure room.  He nodded, removed his gloves and apron, said something to the patient, and said, “This is a problem we have in Uganda.  People don’t have money to pay, and hospitals can’t survive giving free care. The patient has to make choices.”  Obamacare patient directed care taken to an extreme.

Naggalama hospital is basically a compound of one story plastered brick buildings with corrugated roofs connected by covered sidewalks.  Walking around the grounds, it has a very open airiness, families sitting on the grass preparing meals or doing laundry in the troughs provided.  Children run everywhere, both pediatric patients and their supportive services of brothers, sisters, and cousins.  Patients languish in beds if they are too sick, but you may find them sitting on the curb outside their ward, heplock IV in place, as if this were a fresh air sanitarium from the early 20th century America.

Observing the care at Naggalama is feels very much like going back in time.  Limited technology, patchy knowledge, multi-bedded wards, and nurses in caps, it all seems so sepia toned.

In 1965, we drove our charcoal gray 1962 Rambler station wagon to “The World’s Fair” in New York City.  While I don’t remember much about the fair itself, except a telephone with a television screen and some giant plaster green dinosaurs courtesy of Sinclair Oil, I remember staying at the Ambassador Hotel [1] and not sleeping due to the noise of the street below.  But the highlight of the trip to me was a visit to “The Automat” where I put a nickel in the windowed wall and took out a slice of lemon meringue pie.  This was my first experience of the concept of “self-serve” and I thought it was just swell.

In Uganda they still may not have self-serve frozen yogurt stores, or self-serve Korean grocers’ salad bars, or do it yourself Kinkos office machines, but in Uganda they have something we don’t have in the West.  They have self-serve hospitals.

Controlled by the consumer, Ugandan hospitals have all the amenities of a US hospital without those bothersome labor costs.  Most hospitals in the U.S. don’t have 24 hour dining services.  Uganda does.  In order to understand this concept, you first have to know that hospitals in Uganda require that every patient must have an “attendant” that stays with them at all times.  In fact a patient will be refused admission if they can’t guarantee there will be someone to stay with them 24 hours a day during their hospitalization, not that there is a bed provided for your sitter.  Nor a recliner, not even a plastic chair, but the concrete floor next to the sick person’s bed will be your lodging for the duration. 

So you want your dinner at 2 a.m.?  No problem.  Your spouse or sister or auntie will prepare all your meals for you whenever you want, prepared on the floor just below the edge your bed so you can guarantee freshness.  What American hospital can advertise that I ask you?  Familiar foods served on your familiar plates from home, how comforting that must be. 

Or sleeping on your own bed linens, changed whenever your relative is available, the epitome of “home away from home.”  No need for a hospital laundry, or a costly hospital employee to make your bed.  Your attendant will change your linens when you soil them at any time without having to find the call bell no matter how critically ill you are.  

And medical care?  No problem.  Phototherapy is just a few steps away from your bed onto the lawn.  And it can be combined with respiratory therapy; nothing beats some fresh air for those nasty HIV lung infections than sitting on a bench watching the other patients cough and sputter. 

There’s even self-serve hygiene, with your very own wash basin brought from home from which to bathe, and a toilet only 65 feet down the hall.  For the less ambulatory, a bucket brought from home stashed under the bed to spare the walk to the WC, though no curtains for privacy.

Need an x-ray?  Just walk yourself over to the cashier, plunk down some Ugandan shillings and then walk over to radiology and get your x-ray handed to you in just a few minutes, after it has been hung out to dry in the sun first, of course. 

Medications? No problem.  Ugandan hospitals have figured that out as well.  The nurse just leaves your medications at the bedside in little manila envelopes, with handwritten instructions on the envelope such as 1 x 3, or as we so cryptically would write in the US, one tab TID.  And this includes pain pills for the patient to administer themselves prn, what we call Ugandan PCA. No need for those expensive pumps.

And let’s not forget your wake up call, the rooster standing next to your bed at 4:30 each morning.

Remember that the average hospitalization in the US is about $12,600, where the average bill, payable on receipt before they let you out the iron gate at Naggalama Hospital is about $16.  Next time you feel your blood pressure spike when you open your bill from your local hospital, remember that Uganda is only an airplane trip away and Naggalama Hospital is there for you. 



[1] The Ambassador Hotel was deservedly demolished the following year.

I wish I had “woke last night to the sound of thunder” but unfortunately at 4 am, at the sound of the first violent clap, I had yet to fall asleep in my hypobaric mosquito netting, thinking about the patients I had seen the days before and who repeatedly visited me throughout the night, each of them entering my tent, and shaking me awake with their withered hands every time I started to doze; one in particular.

The day started powerless, the electrical supply to the guest house, not my self-confidence, so in the dawn’s light I donned a clean shirt and pants in anticipation of my first day on the palliative care team with Professor Randi at the helm. After swallowing my daily meds, daily bread, and daily eggs, I grabbed my stethoscope and set off with the Professor to find the Palliative Care team at the hospital. 

Nervous we would be late for our 9 am pre-arranged rendezvous, I pressed hurriedly forward, bristling  that Randi was sauntering casually well behind me.  Despite my urging, she wouldn’t speed up.  At 9:45 we were still waiting for the team as Randi sat smugly on a bench, having learned about African punctuality last year. 

By the next day we had seen 12 patients, our pickup truck having bounced through cratered dirt paths to a mud hut or to the backroom of a storefront selling faded plastic chairs, or to a homemade brick house (and I mean both homemade bricks as well as a homemade house.)  The travel and the visits were at times disorienting, and usually nauseating.  Breasts that had been replaced with lumpy creased spackle of tumor, a leg mordantly altered by elephantiasis, pocked with a leg ulcer swarming with flies desperately fighting with each other for the meal of pus, or an epileptic girl that had seized herself into the cooking fire after running out of her medications.  My stomach retched and my heart ached for the nearly living and the barely living, bargaining with their bad fate with an Ibuprofen here, an antibiotic there.  

It was on that second day that we were brought to a clearing, a young boy lying on a reed mat on the dirt outside a small mud cooking hut.   He lay in fetal position on his right side, mouth agape to catch air between the smothers of smoke from the cooking fire a few feet away.  The only sound was chickens scratching at dead leaves nearby. 

Upon hearing our truck, his mother appeared in the doorway of the larger living hut across the small dirt yard. We had been told by the Palliative Care team leader, Prose, that this was a boy they had first seen last week for congestive cardiac failure and had advised a low salt diet.  As I stood back as the documentary picture taker, the team approached the boy.  Randi took the camera from my hands and told me, “This one is yours.”  I weakly protested as I pulled the stethoscope draped over my neck and knelt over him.  Congestive heart failure in a child? What do I know of CHF in anyone under the age of 70?  I know they should have edema – None.  I know they should not being able to lie flat – but here was this 10 year old horizontal in the dirt.  I moved to listen to his heart, and anticipating, the mother dragged the boy to a sitting position to obviate the need for me to bend over him.  I listened to his lungs (clear) and for a murmur (none.)  And then it occurred to me.  The mother had had to drag the boy to sit up.  He didn’t do it himself.  My thoughts stepped back, no longer seeing him as just a kid with a heart problem.  I looked at him lying, slumped in his mother’s arms, and now saw his right arm lying limp, his right leg contorted in a position I would not tolerate if it were my leg.  I reached for him again, with my hands, not my stethoscope, and examined him fully, now seeing a boy paralyzed on half his body, unable to sit up without his mother holding him, unable to straighten that twisted leg, unable to grasp my finger.  I straightened his leg and my own leg felt relief, although the child’s expression never changed, mouth gulping for air, a white coated tongue protruding, eyes wide open and unblinking. 

At some point, old records were produced from a brown envelope the mother: 

2011: Mulago Hospital in Kampala.  A normal echocardiogram.  An abdominal ultrasound: portal hypertension, an enlarged liver and spleen.  A CT scan: ring enhancing lesions in his brain consistent with a fungal infection, “probable toxoplasmosis.”  One of the reports listed him as HIV positive, that crossed out and hand written above it, NEG. A prescription for sulfadiazine and pyrimethamine. 

How long had he not been able to move his arm and leg? About two weeks.  Would she let him be admitted to Naggalama hospital now?  I have no money.  Randi and I look at each other.  It will not cost you money.  Please not today?  Tomorrow we will bring the ambulance. 

As we drove away I wondered what we would do tomorrow with no echocardiogram, no CAT scanner, no neurologist, no infectious disease specialist, no blood tests beyond a CBC, HIV, LFTs.   Shifting uncomfortably, I felt powerless.