Friday, October 17, 2014

Why I Go, uncut

It's been a rather big day here in Billy Rubinland, where against all odds there appeared this op-ed in the Paper of Record about my reasons for wanting to be in Liberia (where, as I type this, I am right now).

Needless to say, it has been a bit of a weird day.

At the risk of boring everyone to tears, I present the uncut version, which I knew was never going to make it into the Times based on length. But if you are interested in going into some greater depth, feel free to read on. Apologies for the redundant parts; they made very few changes from my original chopped version. But I did want some readers to know about Phil Ireland, and to remind everyone again about Sean Collier.




Why I Go

In nearly every medical school applicant interview, candidates are asked why they want to pursue medicine as a career. Invariably, the answer takes some form of a simple idea: I want to help other people. It is almost impossible to make this answer sound new or genuine or creative, and yet for most applicants it is an honest response. 

I’ve been thinking about this of late because, years after I had to answer that question, I’m being asked a similar kind of question from colleagues and friends. You see, I am going to be headed to Liberia shortly to participate in the efforts to control the Ebola outbreak, and—in addition to being asked whether or not I am insane—people want to know why I would willingly seek out such an assignment.

It is a legitimate question. Although I think many Americans have magnified the danger that a person like me faces heading into the current chaos of West Africa, it is nonetheless a risky thing to do, and there is the real possibility that something terrible will befall me while I am deployed. Becoming infected with Ebola is only one of a laundry list of hazards I will face. It is the rainy season in Liberia, which means that I am at risk of catching malaria (even though there are pills that can help prevent it, but it’s not 100 percent protective); I could acquire Typhoid fever, a common problem in sub-Saharan Africa; and there are a host of other infections, less well known but also capable of causing serious illness or even death, such as dengue and Lassa fever. 

But all of these hazards, even including Ebola, are a secondary concern to my primary fear, which is that of violence. As I type this, the media reports coming out of the region are abuzz with the news that eight health care workers trying to aid in Ebola education in a rural village in Guinea were murdered by locals and had their bodies hidden away. One cannot know precisely what was going through the minds of the locals as they committed this atrocity, but I am reasonably sure it was a mix of terror, rage, and helplessness that fueled the violence. Especially in the epicenter of the outbreak where the three most hard-hit countries of Guinea, Liberia, and Sierra Leone all border one another, whole communities are being decimated, and they do not trust anyone, to the point that they will act in ways that make matters only worse as they did in Nzedekore. There’s at least a 19th-century romantic gloriousness at the prospect of catching Ebola as an image of personal sacrifice, but there’s nothing appealing about having one’s body stuffed into a septic tank. I would really, really prefer that not happen to me.

So why do such a rash thing?

In trying to answer this question, a part of me wants to speak for all of the doctors and nurses and water sanitation engineers and all the other consultants who have been scrambling to get ourselves over there. So part of “why I go” is “why we go.” I cannot pretend to speak for everyone, but I am confident that it is this fundamental desire to alleviate human suffering that is driving us toward the Hot Zone. Many of the people on the ground or headed there soon are specialists in disaster relief: they are so committed to aiding people in the most dire circumstances that they have centered their careers around providing services in the most chaotic situations imaginable. They are experts at this sort of thing, and they endure great hardship to bring stability to these kinds of places, so that the people there can have something resembling a life that those of us in more comfortable circumstances would recognize: a chance to live, love and thrive in a reasonably safe environment. We go because we consider that a sacred obligation.

But I am not the kind of professional who made disaster relief my career path, and so while the suffering seen in, for instance, Iraq and Syria right now are no less troubling to me, I never thought to volunteer to go there, or any other number of places where human suffering can’t be quantified. But this outbreak, and the location of this outbreak, has a special resonance for me, and hopefully I can bring some particular skills to the situation.

I am an infectious disease physician. Our subspecialty is an odd lot, not generally highly pursued by ambitious internal medicine residents, who prefer the more lucrative and procedure-oriented specialties of cardiology, gastroenterology, or critical care. Many of those who join the ranks of infectious disease do so for the reason that I did, which is a passion for epidemics, and the awareness of the impact of human behavior and development on disease. Until we had adequate treatment for it, HIV was a disease that proved deadly not only because of the molecular mechanisms by which it chipped away at the immune system, but also because it was transmitted through sex, about which humans have both intense desire as well as deep ambivalence, and which led to policies and attitudes that only made the epidemic worse. 

An infectious disease doctor thinks about what occupations and exposures might cause a disease: where you’ve traveled, what kind of pets you have, what you just ate for lunch. Knowing the details of a disease’s “pathophysiology,” to use a fancy medical word, is only part of what makes infectologists good at their jobs: we simply have a habit of thinking about other factors that impact disease that other professions are less concerned with. I find that intellectual process continually fascinating, and is why I knew I wanted to pursue this specialty from my early days in medical school.

In particular, many infectious disease doctors are driven toward international health, and in particular settings where resources are most limited. Even before Ebola came, West Africa was a place where infections were still the leading cause of mortality, much like it was in the US and Europe 100 years ago. Global health groups often refer to the “big three” diseases that constitute the major causes of suffering: HIV, malaria, and tuberculosis. But that is only the beginning in West Africa. There is Yellow Fever, pneumococcal disease, meningitis, rickettsial infection, streptococcus, and a host of other maladies that can shorten lives and bring general misery to a place. 

Trying to provide long-term solutions to such places is why I became passionate about infectious disease. I read Laurie Garret’s book The Coming Plague (an exhaustive and thoroughly well-researched account of the many infections that threaten our lives) prior to medical school almost 20 years ago, and it changed my life. I agreed with her premise that the rapid technological changes to our world may create a host of unintended consequences that viruses and bacteria will be only too happy to exploit for their own purposes.

And this Ebola outbreak is the infection of my professional lifetime, as seminal an event as AIDS was in the 1980s when nobody knew how far the epidemic would spread or when there would be treatment and how effective it would be. This is as big an event as the Spanish Flu of 1918, which killed perhaps one percent of the entire world’s population in less than a year. And the particular dimensions of this outbreak—its ability to unleash paranoia and cause huge economic disruption on a regional scale—haven’t really been seen since 1665, the time of the last great episode of Plague in London. As an international calamity, the last episode of what we may be witnessing now happened in 1348, when the Black Death killed off about a third of Europe’s population and destabilized the entire structure of medieval European life.

As someone who chose this particular profession for the reasons why I did, how could I not want to help out? Why do the police put their lives on the line on a daily basis? To preserve order. Why do our soldiers don their gear and deploy all over the world, never questioning their orders even when they have personal reservations about their mission? To defend their country. Why do firefighters run headlong to the fire? To put it out, of course. Ebola is not really different, and it is my fire; along with many other colleagues, I go to put it out.

The vast majority of people who pursue these callings do not make the ultimate sacrifice, but they are willing to do so because they believe in something higher than their own lives. As I prepare for my deployment, I have been thinking a lot about Sean Collier, the young officer who served as cop at MIT as he began a career in law enforcement. Sean got a bullet through his heart because a few assholes thought they were making some kind of profound political statement by maiming a bunch of people with a bomb at the finish line of the Boston Marathon. His plans were to transition from his work at MIT to become an officer in a suburban town where he grew up north of Boston. Surely he must have thought that the most dicey moments of his work at MIT would consist of busting up a few frat parties or perhaps handling some rowdy people at a student protest. Yet he wore the uniform, prepared at least in theory to face more serious threats, and then the moment was upon him. His life—and more to the point, his death—serves as a reminder of the meaning of service. I go with a different agenda, but have similar notions.

I go also for more personal reasons. I am a medical educator: my professional joy is not only to care for my patients, but also to train the next generation of physicians. I love to teach and somebody pays me for it, and for that reason I ended up in Monrovia last year to help kick-start a residency program in Internal Medicine for the Liberian Ministry of Health. I was mainly based at John F. Kennedy Hospital, and gave lectures to a core of seven medicine residents, the first class of advanced trainees as Liberia tried to rebuild its medical infrastructure. I came to know these trainees and thought of them no differently than I think of my own residents where I work. 

Among those residents was a young man named Phil Ireland. He was the kind of resident that any faculty member would instantly recognize as a leader: he had a hunger to know more, a drive to take care of his patients, and a charming and warm personal manner. I was excited to see what would come of his career, and before I left Monrovia I asked him to think about whether or not he would consider coming to the US for further training, as Liberia would be able to benefit from his knowledge in the years to come upon his return. 

Then Ebola came, and Phil became infected in the course of his duties. The only good news about this is that Phil survived, although I do not know his condition as I write this. Surviving Ebola is not a matter of going back to work in a week, as survivors cope with a variety of ailments, some of which are quite debilitating. Moreover, they must cope with the psychological trauma of survivor’s guilt, and the post-traumatic stress of having lived through the nightmarish conditions they must have seen and experienced during the illness. I go with the hope that I will see Phil in Monrovia, as well as his classmates, and be able to resume my duties as their teacher. I have an obligation to them.

Finally, I go to honor the work of a colleague who was not as fortunate as Phil. My host in Liberia was the Chief of Internal Medicine at JFK Hospital, a man named Abraham Borbor. I liked him from the moment I met him. He was kind and intelligent and compassionate, and clearly had inspired fierce loyalty among his staff. But what drew me most to him was his sense of humor. We spent hours in conversation about the myriad challenges of living in a place like Liberia and the sorrows that his people have had to endure, and yet despite chewing on such weighty and depressing matters, he still was able to be amused at the world around him. He could joke about the fickleness of American and Liberian politicians as much as he found the idea of pouring some warm coke into his glass of warm beer a source of great amusement—“well, going the same place anyway,” he observed. He had a rich cackling laugh that had the effect of making you laugh along with him—a contagion of a different sort than what has befallen West Africa of late. 

Now, because of Ebola, the world will not hear that laugh again.

When Abraham Borbor saw this plague upon him, he did not flinch and he did not run. He did what he has always done, which is take care of patients. Putting himself in danger to do his job was not new to him. Liberia experienced a brutal civil war during the most productive years of his career. Nobody would have harshly judged his decision to flee the country with his skill set. He had done some training in Britain, and he could probably have managed to find a way to stay there and finish out his career. 

But he returned to JFK and, along with a handful of nurses, basically was the medical staff for years in Monrovia. He had few or no supplies, limited electricity if any, and the specter of real violence at his doorstep every day. Basically he had his wits, and what must have been a fierce determination to man his post. This was his life for years on end. The Liberia that I visited in 2013 must have seemed like a Garden of Eden compared to that. As he neared the end of his professional work, there must have been some satisfaction in that, along with the knowledge that he saw it through. 

Then Ebola came, and he met his end, along with his colleague Doctor Samuel Brisbane, who formed the internal medicine senior faculty at JFK. Not only has their loss been devastating to Liberian medicine in the present, as there are fewer doctors to direct medical care, but it will ripple into the future through the loss of their years of wisdom as a new generation of doctors and nurses learn medicine. There is a crisis upon us now, but after the storm, education will need to resume. I went there as an educator and was treated with kindness and deference. Now, especially with Borbor gone, I go to honor that commitment that he made to his profession and to the next generation. He took me into his world and placed a small part of Liberia in me; how could I not go after the disease felled him?

We live in a cynical age, where a term like brotherhood can only be uttered sardonically, tossed out as part of a joke making fun of Victorian idealism. But Dr. Borbor became—at least in some meaningful although small way—my brother when I went over there. I go because I owe him something.
In addition to thinking about the sacrifice of Sean Collier as I prepare to leave, I’ve also spent a lot of time calling up Beethoven’s Ninth Symphony in my mind. I am not the first to observe what a remarkable piece of music it is. But it is the lyrics that keep running through my head, for Beethoven set his music to a poem, the Ode to Joy, about brotherhood—pure, unadulterated and unironic. We have enshrined the Ode to Joy around the world: we play it as part of opening Olympic ceremonies, we sing it on New Year’s Eve, we listen to it in Symphony halls across the country on a perpetual basis.

Is the Ode to Joy just pretty music, or do we heed its message of a universal brotherhood? Do we find it a useful concept when all is going well but abandon it when chaos descends? Do we in the academic world, who hold graduation ceremonies bathed in lofty rhetoric, and allude to cultural touchstones like Beethoven’s Ninth as being the pinnacle of civilized achievement, really believe in the principles these words would imply? Or is it just cultural window-dressing, used for a carefully arranged photo op for the school’s website?

I go because I do believe in these words. I go because if I do not, after where I have been and the people I have met, those words would mean very little. I would very much prefer to return whole, but if I do not, it will be because I could not see any other way forward.

--Billy

Tuesday, September 16, 2014

Obama's Response To Ebola Is Right

Front-page news: Obama is sending the US Military to West Africa to help "combat" the Ebola outbreak. 3000 troops & some other stuff is the gist.

He's right.

"This epidemic is going to get worse before it gets better," he said in a press conference at the CDC.

He's right. Only a month ago the World Health Organization was talking about 20,000 cases, and I went on record saying that was an underestimate by an order of magnitude. (Sort of, since in that article I was anonymous. I made my official stand here.) With each passing day, the WHO estimate seems like a best-case scenario that is increasingly unlikely to play out, and bigger numbers--much bigger numbers--are starting to be bandied about.

"We must take the dangerous, deadly threat of Ebola as seriously as we take ISIS," said Senator Lamar Alexander of Tennessee.

He's only half-right. ISIS is repugnant, but at worst will only cause some minor mayhem to Americans or other foreigners traveling in that part of the Mideast. They're unlikely to do real damage to the US. Ebola, by contrast, has the potential to bring world travel to a halt. That's rather worse.

The involvement of the US Military “could change the trajectory of the spread of the disease — if that response is fast,” said Steven Radelet, a "former development expert at both the Treasury and State Departments in the Clinton and Obama administrations who now advises the Liberian government on economic matters" according to the NY Times.

He's definitely right.

The question is: why the Army?

The key is this: we think of the Armed Forces of the US as being a monster with a lot of guns. That characterization is true, but it's not the whole story of what they do, either. What they also do--and they do better than any organization on earth--is figure out logistics and mobilization at short notice. Need to send 500,000 people somewhere in 3 months? Okay, fine. Where will you put them? How will you feed them? How will you set up fresh and clean water? Make sure waste is removed without turning a living site into a cesspool? Get electricity and telecommunications to a remote, off-the-grid location? Done. Anything else you need?

Nobody can do this like the US Military. A few others can come close: the Brits, the Germans, the French. I suppose the Russians could. The Chinese almost certainly could. More on them in a moment. But no matter what way you cut it, military organizations think about these kinds of issues all the time.

And what's needed right now is this kind of logistical expertise, especially in the chaos of West Africa. You want these aid organizations to send hundreds, maybe thousands of volunteers to help contain this epidemic? Okay, how are you going to build the facilities to care for the patients? Where will you house the volunteers? Who will clean their laundry without infecting them? How will they get in and out of the Hot Zone? How will you establish command and control? How will you organize your supply chain? And on and on.

The US Military is uniquely qualified to tackle this problem. Without them, the day may well be lost; with them, the tide may turn, although even then, some of the worst scenarios make me shudder.

The Ebola crisis is a national security threat, make no mistake. There is a good deal of ranting on right-wing websites carping about how 200,000 people from Ebola-stricken countries have visas to enter the US. Not surprisingly, it's the wrong preoccupation with the wrong aspect of this calamity. Those 200,000 people won't all get on a plane and come straight to the US, as those stories darkly (if only subconsciously) imply. Indeed, it's become almost impossible to leave Liberia right now by air as commercial carriers have stopped their routes and all but isolated the country.

But all it takes is a few infected people to get to Nigeria, the regional travel hub of Africa, and then the decision tree gets much more difficult. People from Nigeria go everywhere. Will we simply impose a travel ban on everyone from Africa? What would happen if we do, and Ebola travels to Europe or East Asia anyway? Then what would we do? Shutting down Transatlantic or Transpacific travel would cripple the world economy, and could lead to problems just as dire as the prospect of spreading infection itself. 

This is why a group like the US Military is needed. Whether or not they are the only solution is not yet clear. But it's not an overstatement to suggest they might be saving the world by ramping up in the region, which is not at all what their presence will do in Iraq.

As to the Chinese or the Russians being involved in the solution, perhaps they will soon come to recognize the threat of this problem. In the meantime, it is the US government that has drawn a line in the sand and committed itself in the name of world security. That is leadership, and why I am proud to be an American today.

--Billy

Sunday, September 7, 2014

Ebola: How Many Will Die?

It's a crude question, one that turns an international tragedy into a football score. Part of the fascination that Ebola holds for people is the death toll, and news outlets love to tally the stats as we see the bodies accumulate, though from our safe spectator perch in the US.

So I'm not precisely thrilled to frame this entry by focusing primarily on raw numbers, but there's a reason for it if you'll bear with me for a few grafs. It arises from a comment in this recent Salon post by Andrew Leonard. Leonard refers to the WHO estimates that the outbreak may infect as many as 20,000 people, resulting in a death toll of perhaps half that, and then quotes an infectious disease physician who thinks that the WHO's estimate is low "by an order of magnitude."

I was that doctor, and at the moment I'm still standing by my general assertion that 20,000 cases is a dramatic underestimate. Here's some very basic reasoning:

One: disease surveillance in Sierra Leone and Liberia, the two hardest-hit countries, is minimal in some small areas and non-existent everywhere else. The population of these two nations is about ten million people, and that number appears to be reasonably accurate based on 2008 Liberian census data published by the UN. But the report hides a telling fact: that such a census basically wasn't possible without substantial outside help from the international community. After the census ended, those people left, and Liberia was left to its own devices for surveillance. In other words, Liberia doesn't have much internal monitoring resources, for population, or disease, or any other kind of demographic information. Tracking sick people of any kind is beyond their capacity at the moment, and it is only marginally better in Sierra Leone. The international effort is coming, but coming slowly out of an appropriate abundance of precaution that the aid groups are taking to ensure the safety of their staff.

Two: so when we see these numbers of Ebola cases, we're really only seeing the cases that are coming to attention, and we know that there are more cases out there. Many locals are terrified that Ebola treatment facilities are just death mills or worse, are probably keeping their loved ones at home, "hiding" them from official eyes. This has caused Sierra Leone to take the unprecedented step of placing the entire country under quarantine so that officials may conduct a house-to-house search for three days in an attempt to dig a trench to stop the fire from spreading. (MSF, more commonly called "Doctors Without Borders" in the US, heaps skepticism on this plan here.)

Three. when patients are coming to attention, they are trying to mask their symptoms. This is probably how Rick Sacra, the latest American doctor to become infected, contracted the virus. Sacra was not working with Ebola patients, but was rather providing care in an obstetric ward. He was--one hopes--careful enough to check his patients' temperatures before administering care. But anyone can make a fever go away for a few hours with some Tylenol, although they are no less infectious during this period.

Four. combine these three factors and witness a lethal virus on the loose in a densely packed neighborhood like West Point in Monrovia, which has a population of 50,000--or maybe 75,000, or maybe 100,000 depending on your source--and one can only currently guess at the results. Just by sheer concentration, the outbreak has the potential to flourish into the thousands in West Point alone. West Point was cordoned off during the last week of August, and the level of paranoia and misunderstanding there is profound, to the point that locals attacked an Ebola quarantine center, taking away infected patients as well as bed linens and other material covered in the body fluids of probable patients. This single act almost certainly consigned dozens, perhaps hundreds, perhaps thousands, to death in West Point.

Five. people are doing everything they can to flee outbreak areas, and while many of these people may not be infected, all it takes is one infected person to bring disease to an entirely new place. The Nigerian government did a remarkable job containing the outbreak after Liberian Patrick Sawyer brought Ebola to that country in his own effort to outrun the virus. (Sawyer, the article notes, was trying to fly to the United States for treatment, having a ticket that would bear him to Minnesota. Surely that would have grabbed Americans' attention in an entirely different way, and I'm somewhat amazed that this wasn't really broadcast by the US media.) They thought that they had contained it, only to discover that one of their own medical personnel had carried the outbreak from Lagos to Port Harcourt as he fled the government-imposed quarantine.

When viewed on a region-wide scale, these factors suggest to me that we're not even close to some semblance of control over this situation. More than 20 million people live in the three most severely afflicted countries of Guinea, Sierra Leone, and Liberia, and there's no evidence that the outbreak is even slowing down. So I simply don't understand where the 20,000 figure came from, and I wouldn't be surprised that we've already passed that number as I write this. Indeed, at least one academic adept at statistics notes a best case scenario that is not quite double the WHO estimate, with a "medium" estimate close to my casual remark that WHO has underestimated by an order of magnitude, and a "nightmare" scenario that I'm too terrified to repeat--look for yourself.

So why obsess about numbers? Because we're possibly looking at the societal collapse of a good-sized chunk of West Africa unless we appreciate the scale of this disaster. Comparing this to, say, the Haiti earthquake may be too generous. Think more like Rwanda in the early 90s or Cambodia in the 70s: a complete disintegration of anything resembling order, replaced by fear, distrust, and quite likely violence. At the moment, I still think there's a chance to contain this and avoid this kind of total breakdown. But the window is closing, and I'm not yet sensing the level of alarm in government responses that will be required to stop it.

--Billy

Tuesday, August 26, 2014

Ebola and Abraham Borbor

I couldn't help but get slightly irritated at the initial reportage about "the death of a Liberian doctor given the experimental drug ZMapp" yesterday. The Associated Press article that can be found today on many news websites from The New York Times to Fox News does provide the critical detail that was missing in the early report, which is the name of the doctor. Take, for instance, a clip from NPR's report yesterday:

NPR radio host Alec Siegel: Now, there is word today that a Liberian doctor who was infected and who was given the experimental treatment serum ZMapp has died. Is that right?

NPR field reporter Nurith Aizenman: Yes. And on top of that, a British doctor working in a government-run Ebola care center in Sierra Leone has tested positive. He's been evacuated to the U.K. And then another health worker from Senegal who was working at a different facility in Sierra Leone now has Ebola. He was employed by the World Health Organization. They're working on getting him to another country for care.

Given that the AP included this information today, perhaps it was just that the journalists didn't have access to his name, although I can't recall a moment when we didn't know the names of Kent Brantly and Nancy Writebol, the doctor and nurse from the US who had become infected with Ebola. Their names were plastered on every news piece about Ebola in the first week of August. The Liberian doctor's identity has hardly invited concern, similar to the coverage of Dr. Sheik Umar Khan, whose death merited less coverage than a discussion about the ethics of giving him ZMapp.

The Liberian doctor's name was Abraham Borbor.

I knew him personally and admired him greatly. I came to Monrovia last November to spend a few weeks with the internal medicine residents at John F. Kennedy Medical Center. The Liberian medical community, piecing itself back together after two decades of a savage civil war, had re-opened its medical school a few years before, and now they were taking the next step by forming a graduate training program. A colleague of mine in pediatrics had been going back and forth for several years, and asked if I'd be interested in going.

I jumped at the chance. It is not often one is able to see a profession at its inception, much less play a small role in fostering it, but through sheer good luck I happened to be at JFK just as the residents were in their first month of training. I was expected to give some lectures devoted to infectious disease topics, knowing nothing about what these residents did or didn't know. I gave it my best shot. Sometimes I wildly overestimated what they knew: as a side moment in the middle of a lecture about immunity, I asked them if they understood Toll-like receptors, and got blank stares. (Suffice it to say that knowledge of TLRs is very, very much a nicety in Liberian medicine, and not of much practical use. It was about then that I realized I needed to tailor my lectures to my audience mighty fast.) At other times I had to come to grips with my own ignorance of what constituted common pathology in a place like Liberia. Here in the US, the condition of bronchiectasis is mostly limited to patients with Cystic Fibrosis, treated with repeated courses of antibiotics, and its progression is followed by serial Cat scans; there the diagnosis is made by taking a whiff of putrid breath from someone with a chronic productive cough.

Throughout my brief stint there, my host was Dr. Borbor. I can't speak to his impression of me, but I liked him from the start. He was smart and funny, in his element during morning rounds when teaching his interns and residents. It took me time to size up some of the trainees owing to culture shock, but by the end of the first week it was clear to me which of the housestaff Dr. Borbor thought had real potential, and it was equally clear that his appraisals were unsentimental and reflected high standards.

I have only one picture of him, taken in a car when we were driving around Greater Monrovia so I could get a feel for the place outside the walled compound of JFK. This picture was taken of an old Ministry building (Health? Defense? I can't now recall). A good portion of the driving that day was done in the West Point neighborhood that has become representative of the threats and challenges that this epidemic poses to Liberia, and the rest of the world should it get outside of West Africa.


The conversation that day centered around the challenges of not merely providing medical care in such a resource-limited place, but simply living in such an environment. Ebola is only the most extreme example of the hurdles that people in West Point must face in order to live, work, and love just like anyone else in the world wants to do. We spent a good amount of time talking about how such a neighborhood gets power (the quick answer: pirated from transmission wires and then "sold" by the owners of the pirated lines; families who consider purchasing such power think in terms of whether they can afford to have a single light bulb on in the evenings). In these conversations, I came to see that Dr. Borbor had a considerable grasp of problems well beyond medicine that his country faced, and somehow he not only remained undaunted by political and economic difficulties that most of us would consider hopeless, but he maintained a sense of humor as well.

All of this is to give you a sense of the man that I came to know and appreciate, and was hoping to meet again soon, but that's not the most important point to know about Abraham Borbor. What is critical to know about him, as well as his colleague, Dr. Samuel Brisbane, who also died of Ebola one month ago, is that these men formed the backbone of Liberian medicine. (Dr. Brisbane was out of the country most of the time I was there and so my meetings with him were brief.) Both of these doctors had somehow managed to not only stay alive during the civil war, when scores of their comrades either were killed or fled, but they stayed at their posts, continuing to care for patients when a place like JFK had no supplies or anything resembling what we would think of as the infrastructure required to run a hospital. Basically, they had a building, and they had their wits. And Dr. Borbor didn't leave, even though he was among the rare Liberians who had enough means and connections that he could have done so. There aren't words for that level of dedication.

At JFK, which prior to the outbreak was regarded as the central teaching hospital for all of Liberia, Drs. Borbor and Brisbane were the department of internal medicine. If tomorrow I were to be killed in a car accident, whatever the personal loss my death would be to family and friends, in professional terms my absence would hardly register as a blip in American medicine. There are twenty trained specialists who are capable of doing what I do on a daily basis just at my institution, and there are at least a half-dozen other infectious disease doctors also working in the area, either in private practice or at the other major hospital across town. And these doctors constitute just one subspecialty within the broader umbrella of internal medicine. In Massachusetts--a state with roughly a comparable population to Liberia--there are thousands of doctors, plus perhaps a similarly sized group of PAs whose clinical responsibilities often overlap with doctors. At JFK, one of the central places for residents to be given advanced training, Abraham Borbor and Samuel Brisbane constituted the internal medicine faculty in its entirety.

Their loss cannot be so easily replaced. I am sad to have lost a colleague for whom I had much affection. But I am devastated for the future of Liberian medicine. Their loss will reverberate for a generation.
--Billy

Sunday, February 23, 2014

Paternalism: No, Rilly, It's a Bad Idea

Sandeep Jauhar is a cardiologist who has made a few recent contributions to the op-ed page of The New York Times of late, and he's been focused on lies lies lies. Earlier this week he wrote an essay titled "The Lies That Doctors and Patients Tell," which was a refreshingly, and ironically one supposes, honest take on the psychological motivations that can make both doc and patient dance around the truth. Yesterday's offering had the similarly provocative title "When Doctors Need to Lie," and is a meditation on the theoretically counterproductive consequences of what Jauhar calls "brutal honesty" when discussing diagnosis and prognosis with a patient.

I really liked the first essay; this most recent one I find deeply troubling. Jauhar's a good writer, and that talent obscures the fact that he appears to disregard the concept of patient autonomy in its entirety, even though he initially seems to lend credence to the concept. I get the impression that he's being too clever by half, starting out by saying, yes, well, we no longer live in the days where hard paternalism is acceptable, and this is a welcome development...and then he goes on to show an instance of what he thinks is justifiable hard paternalism, even though he never actually makes the argument head on that we should go back to the old ways. To do so would be to invite ridicule and derision; instead, he more or less flaunts his paternalism without calling it such. I don't know whether he's conscious that's what he's doing but it feels creepy, more on which in a moment.

Why do doctors need to lie? Well, some of this has to do with Jauhar's use of that very charged word. Needless to say, the use of that word, especially when attached to a discussion about the profession of medicine, is going to grab people's attention, so there is a bit of hucksterism going on here, especially as Jauhar doesn't really itemize instances of lying. First, he discusses a case in which he chooses merely to hold off on conveying the whole truth of a devastating and probably life-ending diagnosis to a young man at the father's request. Jauhar accedes to the plea, but dutifully notes that "over several days, I eased him into the knowledge of his true condition. Doctors sometimes have to know how to keep secrets."

I don't think this fits the definition of "lying" as understood by most people. Certainly I don't think that's a lie; choosing to "ease the patient into the truth" over a brief period is a common approach and raises issues about tactics more than ethics. But the second case he discusses, while also not really an instance of lying, goes straight to the heart of paternalism--when a doctor assumes the role of someone who knows what's best for his or her patient and makes medical decisions accordingly without consulting the patient. In textbook medicine today, paternalism is largely regarded as unethical, but Jauhar suggests that there are instances in which we should reconsider this:

Even so, there may be a place in medicine for hard paternalism, too. I am reminded of a patient I took care of some years ago. Fifty-something, he had received a stent to open up a blocked coronary artery. A few days after the procedure, while on blood thinners to keep the stent from clotting, he started bleeding into his lungs. He needed to be intubated with a breathing tube or he was going to die. However, I was informed that he had told doctors that he never wanted to be intubated.

Jauhar goes on to note that he was "sure" that the patient would do well after only a brief period of intubation, and lo, despite a rockier course in the ICU than he predicted, he was ultimately successfully extubated and has done well. The essay ends with a pat-oneself-on-the-back moment as Jauhar receives the deep thanks of the patient for having overridden his wishes.

This is post hoc reasoning of the worst sort, and is basically a frank admission that he doesn't seem to give a damn about patient autonomy. The entire point of being bound by professional ethical principles is that they have to be applied even when it goes against one's own preferences. So what that he might be reversed after a brief period of intubation? So what that his problem was transient and, if he could survive the event, there was no reason to believe he might not live for years or even decades afterwards? It's his decision to have a "do not intubate" status, and assuming he made that decision fully informed that there might be grave consequences because of that decision--that is, he might die because of it--it is not for us to think we as doctors know better than him. That's the entire fucking point of patient autonomy.

Jauhar mentions the Tuskeegee Experiment as an instance of ethics gone awry in medicine, and virtually all medical students in the US are acquainted with that dark chapter in the history of our profession. But there's another ethical dilemma that nearly all medical students are forced to grapple with as well before they receive their coveted initials of M and D: that of the Jehovah's Witness who refuses a blood transfusion. The classic case is of a young, otherwise healthy Jehovah's Witness who has experienced blood loss, usually from a trauma; since Jehovah's Witnesses believe that blood transfusions can lead to the intermingling of two bodies, which will cause grave problems on the Day of Judgment (massively oversimplified, with apologies to any Witness readers), they oppose the use of blood transfusions. As I said, nearly every medical student in the US is taught this scenario, and there's very much a right answer here. We are supposed to respect the patient's autonomy, even if it means that the Witness patient will die, even if it means that all they need is to survive through whatever physiologic bottleneck has been caused by the blood loss, and could live for decades afterward. The Jehovah's Witness scenario is not mere ivory tower conjecture, either; several times I've had to have this discussion with Witness patients of mine, and once I had a nail-biting 48 hours as I sat on a Witness in his fifties with severe anemia and moderate heart disease, waiting for a big MI to take him away, though he was placid in his refusal of my initial offer of blood.

Do I think that the theology leading to the Witnesses refusal of blood is misguided? Well, yes, I do. Would I defend my Witness' patients refusal of blood to the teeth? Yes, I would do that too. I do not maintain the corner on the market of wisdom. If my patients want to refuse whatever I have to offer them, and they understand the possible consequences of refusal, then I have done due diligence and it's not for me to judge them, nor is it for me to override their wishes because I'm a doctor. Unless I've badly missed something, I see no distinction here between that textbook Jehovah's Witness case and Jauhar's intubated patient. He just thought he could take matters into his own hands because he knew better than the patient. This is appalling.

In the feel-good happy ending to his essay, Jauhar fails to mention the very high likelihood that there could have been an alternate outcome. The patient could have become ventilator dependent: he mentions that he was intubated two weeks, an exceedingly long time for a person to be on the vent and have a full recovery. He could have had a stroke; he could have developed a pneumonia and become septic, requiring special medications that maintain his blood pressure but can also lead to gangrene of toes and fingers. Would his patient have thanked him so much had he lost the ability to brush his teeth or clean his body? Or has this already happened with one of his patients, and he has chosen to ignore that outcome in favor of the much cleaner scenario in which patients are grateful for the miracles bestowed upon them by angels in white coats, who always know best.

--Billy

Monday, February 3, 2014

Hoffman

I don't watch very much television, and since my children were born I have gotten out of the habit of going to see movies, once a source of deep joy in my life. That said, I have found myself riveted by a new series on HBO called True Detective, largely on the basis of the performance by Matthew McConaughey. Woody Harrelson is no slouch, and the writing and directing are top notch, but McConaughey is the center of True Detective's dark and haunting geography. Coupled with his work on the small-budget movie Mud, as well as his starring role in Dallas Buyers Club, a role in which he lost 50 pounds to approximate the ravages of AIDS in the era before effective medications, I think we've watched McConaughey transform himself from a pretty boy who takes on safe projects (such as the aptly named Dirk Pitt in the movie Sahara) to--one hopes--one of the great actors of his generation. I haven't yet seen Dallas Buyers Club but it's playing down the street and is on my To Do list; what I have seen of True Detective has shown me that McConaughey is a top-notch craftsman who is interested in telling stories about real people, not the cardboard cutouts so often dumped on us by Hollywood.

It's not the kind of oeuvre equal to that of Philip Seymour Hoffman's but it is one hell of a promising start. Yet Hoffman was only a touch older than McConaughey--about a year separates them--and his range was jaw-dropping. So many great actors, even DeNiro and Pacino at their height, settled into similar kinds of roles. There's a similarity in the lead characters of Serpico and Dog Day Afternoon, as there is in Raging Bull and Taxi Driver. Hoffman, though, was all over the place, just as happy to have a small role as the lead as long as it was interesting.

His masterpiece will be, of course, Capote, but when I think of the kind of genius Hoffman brought to a role, the movie Boogie Nights comes to mind. In particular, there's this scene in which Hoffman's character, Scotty J, finally utters a ham-handed confession of love to Mark Wahlberg's character, Dirk Diggler:



It takes barely a minute to see longing, humiliation, self-loathing, and a desperate hope that we as viewers know has no chance of being fulfilled. It is pathetic in the deepest sense of the word, and Hoffman simply inhabited this character for the duration of the scene; to inhabit it any longer would be unbearable. As A.O. Scott said in his remembrance today, "He had a rare ability to illuminate the varieties of human ugliness. No one ever did it so beautifully."

That's what I think we lost with his passing.

--Billy