Alternative
title: "Patients get sick on the wrong days."
These are stories of recent deaths in our study. Sometimes there is nothing you
would have done differently, and still the patient dies. At other times there
is so much you could have done differently, if only the system had allowed.
Regardless, all bad outcomes – inevitable or avoidable - are tragedies
that I can’t, won't, and hope I never do forget.
1.
The guy
who went to Mulago was a friend of mine. One of the few English-speaking subjects
in our study, he became "my patient." I interviewed and examined him: young face, easy smile, strong muscular
body. The only worrisome finding was his skin, which was dotted with dark itchy
spots, a classic sign of AIDS (advanced HIV). We talked about his work as a
schoolteacher, his hobbies, and his family. I met his wife, a beautiful and
smart woman in her 9th month of pregnancy. At the mention of his growing
family, he beamed a big smile.
Bad news
came at our next visit, 2 weeks later, with results from the lab – his blood
was positive for cryptococcal antigen. Cryptococcus is a fungus that
affects people with very poor immune function. The blood infection alone is
treatable with antifungal tablets (for life), but it's much harder to treat if the fungus spreads to the central nervous system. When this happens, the fungus wreaks havoc on the membranes
surrounding the spinal cord and brain, which is called cryptococcal meningitis (CM). CM is quite deadly – 60% die if not treated. With
this patient’s positive blood test and complaints of a new nagging headache, we
needed to check for meningitis. I helped put a needle into his spine and draw
out fluid. This time, worse news – his spinal fluid was floridly positive
for cryptococcus. That same day his pain increased, and his condition worsened.
He was having trouble walking. All we had to offer at the rural site was oral
fluconazole, which could not adequately penetrate the central nervous system;
he needed to go to the Mulago hospital in Kampala
for 14 days of intravenous amphotericin B. Only then would he have a chance of
survival.
With the
gold standard medication running into his veins, daily doctor's visits, and
around-the-clock nursing all lined up in the biggest referral hospital in the
country, I thought the my patient would do great. Besides, he was young,
strong, and optimistic! My Ugandan research twin was less sure. She told me
that if he could survive these 2 weeks in the hospital, then, yes, he would be
fine. …But only IF.
We made a
point of visiting my friend at Mulago whenever we were in Kampala. On day 2 of IV ampho, he looked
sick but better - he had been able to eat and drink some, and even slept
without pain at night. On day 5, he was in high spirits. "I finally
feel that I'm going to recover. I am at peace now!" he told us. And let me
tell you, he looked fantastic. On day 9, we found him surrounded by a
worried team of doctors. A persistent cough had come on suddenly the night before,
and not gone away. Now his rapid, shallow breathing and low oxygen levels
pointed to a serious lung problem. What was it? Did he get an infection from a
neighboring patient, have fluid in his lungs from all the intravenous
infusions, or develop a blood clot from lying in bed that had traveled to his
lungs? A focused physical exam and chest x-ray confirmed infection. (As you can
imagine, infections are an extremely common - and morbid - outcome of hospital
admissions for AIDS patients.) Our patient was moved down the hall to an
"intensive care" bed, which was basically the same plastic mattress
and rusted frame, with the addition of a nearby oxygen tank that he shared with
4 other patients. The low-flow oxygen coming into his nose did nothing. (Please
note that the diagnostics were strong but the resources to treat were lacking.
My twin laments, “we [Ugandan doctors] learn to diagnose, then watch people
die.”) I hoped that my friend would make
it, but the frightened look in his eyes told me that he knew better. The doctors'
faces also gave me no more hope. On day 10, I got the text, it’s sad that d guy went 2 mulago is dead. In just 4 days, he would have walked out of the
hospital to see his wife and newborn baby. Instead he had become, as one
visiting doctor put it, "just another unexpected death at Mulago".
It's hard
to know what might have saved this man, but I wonder how little it could have
been. A full oxygen tank, a private room, or an earlier screening test for CM
come to mind. At the same time, I know that we did everything
possible given the resources at hand. Despite appropriate screening, quick
follow-up, and fast and effective therapy, some patients will still die. Perhaps his death was not avoidable in this reality. And
yet,
For my
patient: to dodge a deadly brain infection, only to be killed by the process of the cure –
For the
Ugandan health care workers: to love medicine, care for patients, pour heart,
mind, and soul into your work, only to feel defeated by the system you work for –
For me: to follow guidelines, offer hope, and provide a treatment, only to wonder if you
really helped at all –
– can you think of anything more tragic?
2.
The
patient who got sick on the wrong day was semi-conscious by the time we saw her, on Tuesday. Obviously she hadn’t gotten the memo: DO NOT get sick around the weekend! There
will be no doctors in the Kiboga hospital for at least 2 days! Her fevers and
headache had started on Monday, and by Friday had turned into seizures and loss
of consciousness. Another deadly brain infection. She was admitted on Saturday
with known meningitis. Then, for 3 days, she lay in the hospital bed. She suffered frequent full-body convulsions and started frothing at the mouth, and was rapidly losing the
ability to speak, swallow, or respond to voice. Aside from the nurse who kept a
close eye on this patient’s deterioration, there was just her brother to stand
stoically by her side and the less-sick patients to watch her go
downhill. The doctors were not in. Maybe they had accepted defeat a long time
ago.
Our study
nurse told us about this patient on Monday, over the phone. After hanging up,
my twin looked at me sadly and said, “Oh, patients get sick on the wrong
days.” We traveled to Kiboga extra-early on Tuesday in order to see this unfortunate patient before our study clinic opened. From car to ward to writing orders, it felt like a
split-second before we had tested her blood, checked her spinal fluid, and
started drugs for a long and scary list of diseases (until the lab results came
through): bacterial meningitis, TB
meningitis, cerebral malaria, and of course CM. Hopefully it wasn’t too late. If
only a doctor had done rounds on Saturday, Sunday, or Monday… If only she had gotten sick on a Tuesday... If only there
were no wrong days…
After about 1 hour, the blood and
spinal fluid tests came back positive for CM. In 3 years of medical school in
the U.S.
I never saw a case of CM, and now I had diagnosed 2 in 1 week. Believe me, there
was no intellectual satisfaction; all I could think was, what a
horrible epidemic. The next terrible feeling came when we had to decide on a
treatment plan. Having just learned of the other patient’s death, I didn’t
have a lot of faith in the “best” therapy. In fact, I kept thinking
that 60% mortality if left untreated means 40% survival if we don’t try to mess
with it… But, at the same time, we have to rely on pooled data in medicine lest
every decision become an emotional reflex to the last patient we saw. The gold
standard of care for CM is IV ampho for 14 days, and that’s what she needed. So
we prepared to send another patient off to Mulago, this one much sicker than the last.
With a diagnosis and a plan, the
gears were set in motion. We confirmed that there was IV ampho in stock, and
that it would be provided at no charge. The patient’s family consented to
sending her to the city. We found an ambulance, with a driver who showed up
promptly and didn’t overcharge us for fuel (normally the patient's family would have to pay). The
patient was still alive when the ambulance arrived in Kampala, and her med infusion was begun. Regular
phone calls to her family told us that she survived the first day and night. Everything
seemed to be going well. Cautiously, we found some scraps of hope. The possibility of survival to believe in. But I remembered the "IF" of IV ampho - one must hope for the best, prepare for the worst.
When day 2 rolled around and we got
the phone call that the patient had died, I was not surprised. I had seen a
much healthier patient succumb to the dangers of CM treatment. My shock was
replaced with anger and frustration, when I thought about all the delays in her
care. If course it’s impossible to know what might have led to a different
outcome, but I’m pretty sure that an earlier exam, diagnosis, and treatment
would have significantly improved her odds. Tragic - yes. Avoidable - maybe. This means that we might have been able to do things differently. Strange, but somehow that gives me hope.
This week we have a meeting with hospital administrators to discuss the lack of doctors in Kiboga on the weekends. Maybe her death will not have been in vain. Maybe one day, there will be no wrong days to get sick.
