Monday, October 30, 2017

What happens when you identify too much with a patient?

The Rules of the Doctor’s Heart
By SIDDHARTHA MUKHERJEE

Every medical case, to paraphrase the writer Viet Thanh Nguyen, is lived twice: once in the wards and once in memory. Some of what follows is still intensely vivid, as if it were shot in high-def video. Other parts are blurry — in part because I must have subconsciously deleted or altered the memories. I was 33 then and a senior resident at a hospital in Boston. I had been assigned to the Cardiac Care Unit, a quasi I.C.U. where some of the most acutely ill patients were hospitalized.

In mid-September — it had been a moody, rain-drenched month, as I recall — I admitted a 52-year-old man to the unit. I’ll call him by the first letter of his given name, M. As medical interns, we were forewarned by the senior residents not to identify too closely with patients. “A weeping doctor is a useless doctor,” a senior once told me. Or: “You cannot do an eye exam if your own eyes are clouded.” But M.’s case made it particularly hard. He was a doctor and a scientist — an M.D., a Ph.D., like me. He must have been about 15 years ahead of me in his schooling; I could imagine him returning to my class in med school to teach us “Patient-Doctor,” in which students are taught how to deal with real-life patients. He’d trained as a medical resident and then as a fellow in cardiology at another hospital across town. He was now an assistant professor — it seemed like such a victory to have that title — and ran a small laboratory. I knew a student who once worked with him. Six degrees of separation? There was barely one.

Earlier that year, in March or April, M. became short of breath in the middle of his run. (Was his running route the same as mine? Across the Longfellow Bridge at Mass General, looping around the river and then back again by Storrow Drive?) His legs turned cold and blue. He had dizzy spells and lost words in midsentence. He saw a cardiologist — presumably one of his own colleagues — who diagnosed heart failure. A series of scans must have revealed a sluggish heart. In place of the regular, intentional motion — jellyfish pulsing in a tank — there was an eerie wobbliness, just jelly. A biopsy was performed, and the diagnosis was amyloidosis, a mysterious condition in which misfolded proteins begin to be deposited in the organs of the body. Sometimes the proteins come from cancer cells; sometimes from poorly understood sources. The deposits choke the organs: heart, liver, blood vessels, kidneys. “And then, bit by bit by bit, I was all pro-te-in,” he said dryly, paraphrasing the Tin Man in Oz. We laughed.

M. needed a new heart. I’m writing this casually, as if you go to the used-heart salesman on Long Island and pick one up on a three-year lease. Hearts are notoriously hard to find; someone has to die for you to get one. About 3,000 hearts are available in the United States every year. Many come from youngish men and women who’ve had accidents or drowned, leaving them in a peculiar limbo — brain-dead but heart-alive. But there are never enough: At any given moment, about 4,000 patients are waiting for a heart. Many of them will never find one... (continues)

Tuesday, October 24, 2017

Bioethics: the Basics

The text we begin with. NOTE: the new 2d edition (978-0415790314) has just been released.


What is Bioethics?

Is health care just a business like any other, or should health care professionals have a higher standard of ethics? Should we invent a pill that enables people to live for hundreds of years? Have parents the right to use science to design the kind of children they want? Does everyone have an equal right to health care, whatever it costs? 

Monday, October 2, 2017

"Can I Spread the Word About an Unvaccinated Child?"

The Ethicist (nyt)
I’m pregnant with my first child, and concern for my unborn baby has prompted me to ask my friends if their children are vaccinated. One close friend, Y, has two young (vaccinated) children, and lives near another friend, X. Both Y and I have suspected for some time that X chose not to vaccinate her child, and we have been trying to work up the courage to ask her. With the new pregnancy as an excuse, the task fell to me.
It turns out that X has indeed chosen not to vaccinate. When telling me this, she also asked me to keep her answer private. While her choice is not one I would make, I am perhaps even more upset by her request that I conceal the information.
Y and X’s children play together, and we have regular gatherings with many young children present. I feel that parents have a right to know whether they are exposing their children to unvaccinated children, especially with anti-vaxxers on the rise and herd immunity declining. My frustration is compounded by the fact that X’s child attends a public school and as far as I know has no valid grounds (for instance, an immuno-compromised child) for exemption.
I respect the privacy of others; however I don’t like being asked to be complicit in placing others at risk. I feel a responsibility to other parents of young children, especially parents of new babies who are not yet vaccinated. Do I respect X’s request to keep the information secret? Name Withheld
Having children can be scary. Parental love, like all love, makes you vulnerable, because you can be profoundly threatened by harm to someone else. Unlike most other loves, however, parental love also involves overwhelming responsibility. Your young children are enormously dependent on you. In light of these intersecting conditions, it’s not surprising that parents can be panicked by the possibility that they will fail as caretakers. Such panic has been promoted by activists who spread untruths about the dangers of vaccines, especially the vaccine that protects against measles. (The anti-vaccination movement was fueled by a discredited study from 1998 that linked the measles vaccine to autism.) I refer to untruths and not lies, because the anti-vaccination movement is no doubt largely sincere. Sincerity, though, doesn’t make them true.
As you make clear, two benefits come from vaccination. First, a vaccinated child is less likely to suffer serious harm from exposure to the relevant pathogen. Second, if enough children are inoculated, everyone’s risk is reduced by the “herd immunity” you mention. That means that you can help protect all the kids in your community, including those who (because they are immune-compromised or allergic to the vaccine) can’t be vaccinated.
When vaccination rates are high enough, the disease disappears from the population until it’s reintroduced from outside. The level where this happens is called the “herd-immunity threshold”; and it varies depending on the efficacy of the vaccine and the contagiousness of the pathogen. Unfortunately the immunity threshold for measles is very high, around 92 to 94 percent. Fortunately, in most of the United States, we’re at that level. In 2000, the disease had effectively been eliminated here. But there are 10 million cases a year outside the United States, and travelers (especially unvaccinated ones) bring it back. The anti-vaccination movement, meanwhile, appears to have depressed vaccination rates in certain communities, as happened recently in Minnesota. So the virus reappears, and outbreaks can happen.
Given the combination of vulnerability and responsibility I mentioned, one reason parents avoid vaccinations is some version of this thought: “If I decide to vaccinate my child and something bad happens, my child will have suffered at my hands.” But if that’s a sensible thought, so should this one be: “If I decide not to vaccinate my child and something bad happens, my child will have suffered at my hands.” What’s important is whether the likely results of vaccination are better than the alternative. And the answer, once exposure to measles is a possibility, is yes. Even if that weren’t true, there would be a second reason for being vaccinated: If we all did it, we would get herd immunity.
At that point, someone who thought that there were even small risks associated with vaccination might say, “Hey, I’m going to avoid the risks of vaccination for my kids, because the disease is very unlikely to reach them.” But that’s true only because other people are vaccinating. So someone who thinks this way is a free rider, like the person who figures she doesn’t need to pay the bus fare because everybody else does. One of the anti-vaxxers’ offenses is refusing to undertake their fair share of the burdens for something from which they benefit.
And just to be clear about how great those benefits are: In a typical year before the measles vaccine was available in the United States, the virus infected millions, sent tens of thousands to the hospital, gave encephalitis to at least a thousand and killed hundreds. Given that measles is a highly contagious disease that can be fatal and that the risks of vaccination are minuscule, not vaccinating your children is wrong. X has done wrong, too, if she’s lying to her kid’s school — public schools require vaccination unless there’s a recognized medical reason not to or the parents have a sincere religious objection. (Can’t imagine a religious objection? Many Christian Scientists believe that health problems should be dealt with by prayer, not medicine, and so some reject vaccination, even though the founder, Mary Baker Eddy, said that a Christian Scientist should be vaccinated “if the law demand” and then “appeal to gospel to save him from bad physical results.”)
To be sure, the direct risk of infection remains very small, and the main harm done by avoiding vaccination would occur only if more people did it. But it isn’t crazy to worry about the danger of contact with unvaccinated children; parents are entitled to know the status of the kids that their kids play with. Something like 3 percent of vaccinated people can still get measles (though it’s very likely to be less serious than in the unvaccinated). And children aren’t normally vaccinated until they are 1, so older children with infant siblings need to be kept away from the virus, too.
What about respecting X’s request that you keep her answer private? There’s an important norm here, but it doesn’t necessarily apply to information that other people are entitled to know. Besides, you and Y have conferred in your effort to find out the truth; how are you supposed to respond when Y asks you what you learned?
Tell X that she ought to inform Y about the situation and also tell the school the truth. Letting her do it shows that you acknowledge her request not to pass the information on yourself. Give her a few days. If she continues to leave Y in the dark, though, you can tell Y what you’ve learned. As far as the school goes, there may be no easy alternative to informing its officials directly. Why not tell X that you’ll be checking on her? Because that would turn a request to tell the truth into a threat.
But some vigilance is warranted, especially now that anti-vaccination “science” has a proponent in the White House. A recent study found that even a small increase in what’s diplomatically called vaccine hesitancy would have large public-health consequences. Talk about scary.
I volunteer at a used-book store whose proceeds benefit the local public library. Our books are donations and library discards, which we sell at very low prices. Occasionally an old or rare book comes in. We then check the internet to see who else is selling that book and price it at the lower end of what others ask. Recently I came across a book that was priced by another volunteer at a normal low price. However, the book seemed to be an old and rare book that should have been checked. I bought the book at the low price. Do I have an obligation to check the going internet price myself, and if it is high, pay the difference or return the book? Name Withheld
You can tell yourself that you just did what anyone interested in the book would have done. After all, your store is no worse off than if a random customer had bought it. But people who work for charitable businesses have an obligation to look after their interests. If you thought the book was underpriced, you should probably have brought it up with the other staff members and, if you still wanted it, paid the price that was set once its value was known.