Interesting Question …

There was an interesting question asked of Randy Cohen, who writes The Ethicist in the New York Times Sunday Magazine:

I interview high-school seniors who apply to my alma mater. I routinely Google these students and discovered that one posted information on his blog that reflects poorly on him. May I ask him about the blog? May I mention it to the university? Should it affect the score I give him?

Cohen had an interesting answer:

Put down the mouse and step away from the computer. You should not Google these students in the first place, let alone make your dubious discoveries a factor in college acceptance.

You would not read someone’s old-fashioned pen-and-paper diary without consent; you should regard a blog similarly. Your reading this student’s blog is legal — he posted it voluntarily, and in that sense it is public information — but not every young person grasps this. Many unwisely regard their blogs as at least semiprivate. You should not exploit their youthful folly. Indeed, so befogged are students about online postings — especially to FaceBook, MySpace and the like — that universities commonly devote a portion of freshman orientation to wising them up.

Phillip Burns, who works in the office of student conduct at the University of Nevada, Las Vegas, says, “Many of us in the field have put great time and energy into educating our students on the potential risks involved with online communities and want them to realize how — once posted — that information is out there for pretty much anyone to see and use.” U.N.L.V. itself does not seek out online information in evaluating applicants.

Because such material will not be considered for most students, it is unfair to subject your interviews to this additional scrutiny. What’s more, such online info is unreliable, even when posted by the person himself, as many an Internet dater has learned to her peril. Not every six-foot guy with a head of rich luxuriant hair would be recognized as such. Not in person. Not by his wife. (He’s married? That liar! That tiny, bald liar!)

As to this blog affecting your view of the student, how can it not? You can’t unread it. It’s bound to influence you, and that is part of the problem.

UPDATE: Lublin checked with the university and was told not to ask the student about the blog but to include its URL with his report.

I’m not quite sure that I agree with him. His answer is based, to some extent, on the premise that what people post to their blogs is “… at least semiprivate …” – whatever that means. I’ve come to understand that whatever is posted on the internet is most definitely public. And as such, it is not privileged or protected. The real question is whether or not applicants to a university should have their backgrounds looked into, and if so, how far. Certainly universities look into students backgrounds to a limited extent: they require letters of recommendation, transcripts and test scores. But those items provide only a limited picture. An applicant may choose to solicit recommendations from thre 3 teachers who he has good relationships with, but not the 8 who feel otherwise. If the school or teachers don’t know that the student was arrested for DUI or like to make YouTube videos showing small animals being tortured, then the university may not know the full extent of the applicant they are accepting.

If posting one’s not-so-bright exploits on a blog, or in a video, or as a series of publically available photos reflects poor judgement, shouldn’t universities be allowed to evaluate applicants and taken into account that that applicant may have poor judgement that could cause problems in the future? What does one make of the ability of college applicants to comb through student-written reviews of university faculty available on-line at sites like RateMyProfessors.com – reviews that are in no way, shape, or form objective, while colleges shouldn’t Google the names of applicants to look for any serious “red flags”.

The reason I bring this up in this forum is because of an interesting discussion that was held over on Sermo. For those of you not familiar with Sermo, it is an online community of physicians where questions can be asked of the community and, similarly, answered by the community (or a subset thereof). It’s not unlike AskMetaFilter – just medical.

In any case, someone recently posed the following question to Sermo:

Is it ethical to “Google” your patients?

We all experience difficult patients that are not always completly honest with us? I read in some comments on another post that some physicians will preform an informal background check on their patient by “Googling”. I’m not sure if this is productive or ethical. Is it OK to use any resource at our fingertips to dig up information on our patients even without their knowledge? Are there HIPPA implications here?

Needless-to-say, this elicited a number of comments. Also, a “poll” of 135 physician respondants showed that 88% said, “Yes, any information in the public domain is fair game” while 11% said, “No, it is not ethical or legal to search for further information about your patients outside of what is disclosed when taking a history”. Some of the comments were very thought-provoking. I can’t link to the page because Sermo is a member-only community, and I won’t repost the page because I don’t want to violate the privacy of the people who answered. However, I can tell you that a fair number of people answered along the lines of, “I’ve never thought of doing that!”. Here’s an anonymized sample of some of the more interesting responses:

  • “If the patient makes your radar go off and you’re suspicious of something, anything out there is fair. I don’t think there is any HIPAA violation because most of what you would find on Google would have nothing to do with their health.”
  • “Doctors are such funny creatures, we run so afraid of everything. Is is unethical to look at public information about people who are coming to your office? You do not even have to “accept” patients for treatment if you do not choose to. Of course it is OK to look up this information, and there is absolutely nothing about this that violates HIPPA … If you need some information about a patient, then look it up. If you are nosey and gossiping and just plain snooping, then I guess you know the answer. You must look at what is your true motive for researching this information on your patient and determine is it right”
  • “I work part time in an urgent care in [a place with a lot of entertainment personalities], i google people i “kind of recognize” all the time.”
  • “I would consider the Googling of patients highly irregular, unethical and probably a violation of HIPPA. Could you take your patients name and walk to the courthouse and ask a clerk to do a search for you – I think not. Don’t think for a minute that because yuo’re in the internet that no one knows what you’re doing and there is not an electronic fingerprint of the queries you make. Patient – physician confidentiality is the cornerstone of what we do — breaks this and god help us. By the way HIPPA was meant to expedite transfer of medical information — it was not meant as carte blanche to take your patients information and google it.”
  • “If a local newspaper publishes an article about one of our patients, are we prohibited from reading it? If there is a public record of an event that involves one of our patients, are we forbidden from reading or having knowledge of that information? Yes, there is bogus information posted on the web — but there are also numerous valid news sources and community information sources that have just as much validity as our newspapers or our local television newscasts. Is there a difference between seeing information on a computer screen instead of on the page of a newspaper?”
  • “I google patients often, and you would be amazed what I have found. Here are a few examples.A well dressed father brought in his XX year-old son, who had fallen out of a second story window and was in excruciating pain. Father said his son was allergic to everything except oxycontin. I searched the father’s name on the county website and found half a dozen arrests for drug related offenses. I called the narcotics squad of the police department and eventually learned the father had gotten prescriptions for his son from several physicians and emergency departments in the past month … A mother brought in her XX year-old son for treatment of ADHD and unsocialized aggression. The boy’s father had been in prison. There was something that worried me about the way the family acted, so I googled the father. He had escaped from prison and was on “America’s Most Wanted!” I did not say a word. Later that night father was arrested. At 3 AM I heard a knocking on my front door. I figured mother assumed I had turned in the father, so I did not open the door. I later learned mother had left her purse in my office, but I am still glad I didn’t open the door.”
  • “Who said patients have the right to tell us “only what they want us to know”? The whole concept of confidentiality is that they feel safe to tell us EVERYTHING and we will not tell anyone else. Whenever I get the feeling that the patient is not being honest with me I explain “we do not seem to have the rapport that is necessary for a good physician-patient relationship, and therefore…” without being specific. I don’t do tests unless different outcomes will lead to different next steps, and I don’t ask questions unless dfferent answers will lead to different next steps. But since a dishonest or evasive answer can lead to a WRONG next step (just like an erroneous test result) I have to insist on the truth if I am to treat the patient correctly.”
  • “Patients “google” us all the time. But then again, who amongst us has time to “google” patients”

Sometimes you wish the evidence was wrong.

cellphonegraph
I hate my cell phone.

It’s not because it’s a bad phone. It works fine. The plan I have isn’t too terrible. And, I will admit that it is a valuable tool for my work.

I just hate having to have it.

It’s not unlike the relationship that I have with my pager. I remember the day that I first got a pager – late in my 2nd year of medical school. We were required to rent our own pagers for the start of our 3rd year medical school clerkships. I remember thinking, “How cool. I’ve reached a point in my life where it was important that other people be able to get in touch with me any time of day.” It didn’t take me too long to realize the flaw in my thinking. People higher up the food chain were did not pay for their own electronic leashes. In fact, people at the top of the food chain often didn’t have electronic leashes. They had the privilege of not being accessible 24/7.

I feel the same about my cell phone.

And to think – I was contemplating Blackberry or Treo. I’m glad that I didn’t. Especially after reading Paul Levy’s revelation that he was giving his up. If someone of Paul’s position could do without one, then I can certainly do without.

The one place that I found my cellphone to be helpful was in the hospital. Being tethered to a wall or desk telephone to return a page or call the lab is difficult for an intern, resident or fellow. Housestaff often need to work while walking from ward to ward, or building to building. Especially since the implementation of the 80 hour per week rule – there is a limited amount of time in which to accomplish one’s work. Efficiency is essential, and cell phones help.

However, many hospitals, for many years, have had bans on cell phones in patient care areas. The hospital where I trained for my residency was positively draconian about their rules. You couldn’t use cellphone anywhere in the hospital. In the NICU we had wireless, non-cellular phones. But for the most part you had to use regular wired phones. The rationale for this was that cell phones could interfere with monitoring equipment or other medical equipment. I found this to be incredibly annoying from a housestaff point-of-view, especially because there was no evidence to support this policy. On the flip side, I truly appreciated working in a hospital where every other person didn’t have a phone held to his or her head. While some people (Mrs. Blog, MD, for example) have stellar cellphone manners, many people don’t. I find hospitals to be sonically displeasing environments at baseline – pagers, monitors, alarms, overhead paging, and too many people – and so adding cellphone chatter is throwing gas on the fire. At my previous hospital I took the same joy in telling people that they couldn’t talk on their cell phones that I do in telling people that they couldn’t smoke cigarettes on hospital grounds. Being able to extinguish cell phone conversations somewhat mitigated the fact that I couldn’t tell smokers to stop smoking in the blunt and forthright way that I felt was appropriate for someone smoking outside the door of a children’s hospital.

Yesterday, a report was published in the Mayo Clinic Proceedings clearly showing no interference or interactions between cell phones and medical devices (full text available here). The authors tests 192 medical devices with two different cellular phones (Nokia’s, in case your were curious) and two different phone protocols (one was CDMA and one was GSM). Fortunately they didn’t indicate which cell service they used, so we won’t be seeing annoying Cingular or Verizon ads trumpeting their “hospital safeness”.

The authors concluded:

This study determined that the cellular telephones tested, when used in a normal way, did not cause any interference with the various medical devices present in the patient care areas studied. For institutions that have restricted cellular telephone use, these studies support revision or abolition of the existing policy.

Truth be told – I’m actually a little sad about this, because it means that one of the few cellphone free zones left in the world may be opened to the noise pollution that accompanies unrestricted cell phone use. And I can tell you that there is nothing more frustrating that the collision of a busy medical team and poor cell phone manners. The times I’ve moonlight and walked into rooms to see patients only to have them give me the “just a minute I’m on the phone” hand sign, I’ve walked right out and put their chart at the bottom of the pile. I hate to say it, but if your phone call is more important that discussing your child with a doctor, then your child is probably not that ill.

The authors of the current study recognize this:

If not clinically important adverse effects occur as a result of using cellular telephones in the hospital, then it seems that the advantages this technology brings to institution and patients would be well received. These advantages may be tempered by etiquette and lack of common courtesy by some individuals when using cellular telephones (cellular telephone users talking loudly and obnoxiously, bother other patients and visitors).

I suspect that before too long, hospitals will be like many other places, where cellphone conversations and the bad behavior the accompanies them, is commonplace, and where people are only half-focused on what is going on around them. The potential for cellphone use on airplanes makes me wish that this study had never occurred, and that the evidence-free policy persisted.

Repair Comfort. Decommission War.

This past weekend, when it was markedly warmer here in Boston, the aircraft carrier USS John F. Kennedy was in Boston Harbor prior to being decommissioned (links to lots of photos are available through the most-excellent Boston Blog site Universal Hub).

Now, I’m not big on war, as you may have gathered here. But there is something about seeing a really, really big ship. Maybe it’s just coded for on my Y chromosome. I caught a glimpse of the ship coming into Boston Harbor as I drove home across the Tobin Bridge on Friday morning, and so on Sunday I figured I’d scooter on out there and have a look myself. I wasn’t about to stand in the 5-hour-long line, but I figured I’d snap a picture or two, which I did:


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What was much more interesting to me was to see that the U.S.N.S. Comfort, the navy’s “floating hospital” ship, was also here to be worked on. Let me tell you something: the U.S.S. Comfort was more impressive for it’s size. It’s huge. The pictures I took don’t do it justice. The ship is over 270 meters in length (that’s nearly 1/5 of a mile). Here are a couple of snapshots:


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There’s a much better photo gallery of the Comfort available here. I rather like the juxtaposition: the hospital ship is in for repairs so that it could continue to serve. The warship was being decommissioned and is going to be mothballed (which I overheard from a navy officer as I was walking to take pictures).

For the love of spiders …

lrg-2-spidercatcher

OK. This has nothing to do with medicine, oncology, hematology, or health policy. It’s just something fun. And to some extent it was prompted by an episode of On Point with Tom Ashbrook (WBUR) featuring Greta Binford, an arachnologist, and her adventures with (ugh) spiders. You can listen to the show here and see some of her photos here.

I am moderately arachnophobic, which is one of the (many) reasons that I was not a big fan of living in Cincinnati when I was there for my residency. It was just warm enough there to have plenty of creepy-crawlies. It seems that the climate here in the Northeast makes for a less friendly environment. Either that or the cats have been eating the spiders before we find them.

That being said, I’m not a big fan of killing living organisms. So I was thrilled to hear about the spider and environment-friendly Spider Catcher (pictured above). This gadget apparently allows you to capture spiders without squishing them against the wall.

The ad says it all:

The Spider Catcher is approximately 65cm long which is enough to keep you at a comfortable distance while you pickup and transport the spider or insect to a safe relocation. Perfect for awkward corners or reaching up high, there’s no longer any need to put your back out in your attempt to catch the unwanted pest!The innovative Spider Catcher is capable of catching many different insects, so if you’re plagued by flies or if there’s a dead wasp on your windowsill, the unique bristle head on this fantastic device enables you to gently catch the insect, carefully trap it and then release it outside. In fact, the Spider Catcher is so gentle, you can even use it to capture butterflies and moths without causing any harm to their delicate wings.

Apparently this brilliant device comes from Britain.

Where do you serve the subpoena? The Hall of Justice in Metropolis?

So here I am, trying to do some serious writing tonight, and the table of contents for this month’s Archives of Disease in Childhood shows up in my inbox. Six out of ten times I don’t even bother to read through it, even though I’m an ad hoc reviewer for it, and even though it’s brought to us by the good folks at the British Medical Journal (one of my favorites).

For some reason – maybe I just needed a break – I scanned through the e-mail and barely noticed this one word fly by as I was scrolling quickly through the message:

“Superhero”.

I did a double-talk in front of the monitor. Superhero? This has to be good. I scrolled back and sure enough, right in front of my eyes, was the title of journal article:

“Superhero-related injuries in paediatrics: a case series”

I thought, “This has to be good. Certainly worth looking up.”

A few minutes later and I have the paper up on my computer, and staring me in the face is its one and only figure:

snapshot
So, what’s this paper about, you ask? Well, here’s the scoop:

Five cases of serious injuries to children wearing superhero costumes, involving extreme risk-taking behaviour, are presented here. Although children have always displayed behaviour seemingly unwise to the adult eye, the advent of superhero role models can give unrealistic expectations to the child, which may lead to serious injury.The children we saw have all had to contemplate on their way to hospital that they do not in fact possess superpowers. The inbuilt injury protection which some costumes possess is also discussed.

The authors discuss a short case series here. The first, and most detailed, was of a 6-year-old boy who suffered an unwitnessed fall from a 1st floor indow while wearing Spiderman outfit seen above (note the “anatomically correct upper body muscle padding”). In doing so he earned a head bonk, a swollen eye and an injured foot. He had been pretending to be Spiderman and had climbed out of the window. The other four cases were also falls: three kids pretending to be Spiderman, and one pretending to be Superman. As the British authors put it (in that oh-so-British way):

“They were injured after initiating flight without having planned for landing strategies.”

Brilliant. Only the British can make something like this so amusing.

The authors indicate that while they are strong advocates of adventerous play and while they also understand that risk-taking is an integral part of childhood, they caution that parents need to be aware that children may believe that their abilities “have been given a super-boost” with an appropriate costume. They add the following warnings:

Parents whose children dress up as Bob the Builder should understand that hammers and saws are highly likely to be used in play. The parents of Spiderman afficionados should ensure that windows are correctly closed and locked. Superman’s parents may find it easier to encourage their children to wear glasses, and Wonderwoman’s parents may wish to give early fashion advice and not tell lies.

I looked in Medline to see what a search for “superhero” turned up. There are exactly five previous citations that include the word “superhero”. The authors cite what is apparently the seminal paper on the phenomena published in German in 1992 in Praxis der Kinderpsychologie und Kinderpsychiatrie. Entitled, “Dangerous comics – only a fantasy?” this paper considers whether or not the violent fantasy world of comics leads to violence in children. Their work indicates:

Comics with their regressive pull and their independent superhuman heroes represent the archaic world of narcissism unconscious, unwilling to develop and conservative. Violence serves to maintain the original state or regain a harmonious “paradise” … Thus superhero comics are only dangerous for severely disturbed children.

Apparently not.

This being America, and not Britain (which apparently has a better sense of humor about these things), leads me to wonder when we’ll be seeing tags on Spiderman costumes stating: WARNING – THIS COSTUME DOES NOT PROVIDE ACTUAL SUPERPOWERS. DO NOT ATTEMPT TO LEAP FROM BUILDINGS, TREES OR OTHER TALL STRUCTURES. Or when the first lawsuit will come up.

In any case, my point was not so much about the lawsuits, or even the phenomena of children pretending to be Superman and attempting to jump from roof of the garage while wearing a cape made of an old bedsheet. My point is more along the lines of how much fun it is to look at the world with the eyes of a physician or scientist and witness the various oddities of human behavior. Especially with children. It’s the best part of the job. My hat is off to the authors of this fun little paper – first, for taking the time to recognize the patter; second for having the initiative to write it and submit it; and third, for doing it with such style.

You can download and enjoy the paper here.

Nice Legs. Who owns them?

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You may be wondering whose owns these legs, and why they’re clad in little red and white ribbons. I was wondering that myself, as I was leafing through this week’s American Medical News. It turns out that they belong to television host Meredith Vieira, who apparently rented them to the pharmaceutical giant Sanofi Aventis. Sanofi, it turns out, happens to make enoxaparin, also known as Lovenox® – a low-molecular weight heparin. Meredith and Sanofi have been co-promoting a DVT (deep vein thrombosis) awareness campaign on NBC and MSNBC. To be fair, if any multinational conglomerate television network is going to have a reason to publicize DVT, it’s NBC. Remember that they lost one of their reporters – David Bloom – to a DVT. In any case, it turns out that someone has designated March as “DVT Awareness Month”. Well, not just somone. Brian Dorgan (D-ND) and Arlen Specter (R-PA) managed to pass Senate Resolution 56 on March 2, 2005, which I guess makes it official. Sanofi-Aventis funds an organization called Coalition to Prevent DVT which is driving the current advertising campaign and the DVT awareness month.

Fancy that.In a way, this is clearly a worthwhile effort. As part of my training, I’ve done quite a bit of pediatric hematology and have seen my fair share of deep vein thromboses. I’ve also seen enough pulmonary emboli to make me fear them, and enough venous stasis disease to recognize that the damage done by DVTs is more than just a clot or an embolus. That being said, I am a little uncomfortable that the company that makes one of the main medications for the treatment of DVTs and PEs has co-opted a public figure into doing their advertising. There’s been a huge push to have the relationship between pharmaceutical companies and physicians stripped to is most minimal connection, or severed altogether. People worry that a click pen or pad of PostIt notes will unduly influence physician prescribing habits. Fine. I prefer by non-branded pens and sticky notes anyway.

But I can tell you this: Meredith Vieira reaches 10,000 or 100,000 or 1,000,000 times as many people per day as I do, and going by absolute numbers of people influenced, she clearly wins. However, I don’t see anyone questioning her relationship with a pharmaceutical company. If Sanofi wanted to fly her to meetings and put her up in a nice hotel, I doubt we’d hear people criticizing her objectivity. But have a drug rep a group of starving residents a pizza to get them through a 30-hour shift and stop the presses … we have physicians being corrupted by industry. Thoughts?

“You don’t mind if I tape this, do you?”

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A couple of weeks ago, when I had a serious bout of insomnia, I stayed up until past two o’clock in the morning watching All The President’s Men. It’s one of my all-time favorite movies.I noted the absence of tape recorders as the fictionalized Woodward and Bernstein went about their investigations. This was, of course, 1972, and microcassette recorders weren’t available for $19.99 at your local Staples. It gave me a chance to think about how much easier life is given our ability to record experiences as they happen. We have, as a society, gone far beyond just tape recorders. They’re actually considered quaint. What, with everyone putting everything on the Internet as a podcast or YouTube video, or people recording things with their cell phones, the little cassette recorder that I bought back at the beginning of medical school is practically an antique.

I thought about this long-lost tape recorder when I came across an abstract of an article that appeared recently in the British Medical Journal regarding audiotaping of neonatal consultations. The article, entitled “Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial” (BMJ 2007; 334;28-31) tested whether providing mothers of children in NICUs with audiotapes of their conversations with their doctrs helped the parents to recall information and whether or not these tapes helped with their psychological wellbeing. It is clear that parents of children in NICUs, and in fact many parents with children who are critically ill, often do not remember all of the information that they’re bombarded with.

In my experiences, this is also quite true on the pediatric oncology service – at least in the days or weeks immediately following a new diagnosis. One of the things that I tell parents at the time of diagnosis is that they will likely not remember much of what I say after the words “I think your child has (insert cancer diagnosis here)”. We compensate for this on our service by repeating things over and over, as well as by relying upon many other teachers, including nurse educators, primary nurses on the wards, and primary nurses in clinic. By the time a child has reached the end of their first few weeks of chemotherapy, their parents have had a pretty good education in the the nuts and bolts of caring for a child with cancer. By the end of the first few months parents are pretty savvy, and by the end of a year many know as much about their child’s disease as any of the hospital residents.

That being said, the initial few days are usually a blur, and of course that’s when the “big talk” takes place. By “big talk” I mean the initial informed consent discussion to initiate therapy. We call this the “Day One” talk where I work. It usually is a formal sit-down talk between the family (and whoever the family wants present), the patient’s primary nurse on the ward, the pediatric oncology fellow covering the inpatient ward, and the pediatric oncology attending. Learning how to conduct a Day One talk is one of the most important things learned during the first year of fellowship, and it comes from watching and listening to attendings give good (and sometimes watching and listening to not such good talks). One also learns a great deal from seeing how different families react. Some are so antsy to start treatment that they don’t seem to really want to sit through a 90 minute discussion of the different side effects of the different medications, the various risks and benefits, and the minutae of treatment. They want to sign on the dotted line and get the first dose of chemotherapy in. I don’t think that these families are nonchalant about the details of their child’s care – rather, I think that the amount of information floods an already busy switchboard.

Some families, on the other hand, want every detail and then some. Some bring aunts or uncles or other relatives who have backgrounds in medicine. Some are meticulous note-takers.

A couple of years ago, when I was a relatively new 1st year fellow, a family brought a tape recorder into the room and set it down right in front of me. I can’t remember whether or not they asked me if I would mind being taped (I think they did), but I remember being weirded out by it and telling them that I’d prefer not to have my every word recorded. In the few minutes that I had to react to this, I felt a combination of fear and uncertainty. I wasn’t sure that I was going to do a 100% perfect job (being relatively new at the whole oncologist thing) and I didn’t want that to haunt me at some point later. To be honest, I was afraid that something catastrophic would happen to the patient – something that I wouldn’t have covered in my consent discussion – and that the next time I saw that tape recorder it would be in the hand of a stern-looking malpractice lawyer.

Today, a couple of years older, wiser, and more confident in my understanding of my chosen profession, I believe that I would want that family to record the discussion. In fact, looking back, I wish that all of these types of conversations were recorded. I’m almost surprised that they aren’t, especially when one considers the amount of thought that we give to the Day One talk.

Turning back to the BMJ study of mothers in the NICU, the initial conversation (similar to our Day One talk) as well as subsequent conversations deemed important by the attending neonatologists, were taped and the mothers received a copy of the tape. The results of the study showed that 91% of mothers listened to the tape after one week and 95% listed at least once over the first four months. The mothers who received tapes of these conversations were, as you could imagine, more likely to recall the different diagnostic tests, treatments, and outcomes that were explained to them. There were 6 (of 98) mothers in the control group – those who didn’t receive a tape – who were unable to recall any information from their discussion with the neonatologist.

After reading this paper, I immediately wondered whether or not this has been tried in oncology. It turns out that there’s a fairly substantial literature for the use of taped informed consent discussions in adult oncology. It also turns out that many institution’s websites that discuss clinical research trials recommend patients taping the informed consent discussion, including UCSF, MD Anderson, and the website for the National Cancer Institute.

It also turns out that taping “Day One” talks has been looked at, at least once, in pediatric oncology. There was a paper published in the Journal of Pediatric Hematology/Oncology entitled, “Audiotaping Communication of the Diagnosis of Childhood Leukemia: Parents’ Evaluation” (J Ped Hem/Onc 2003; 25:5) that, while not a randomized study, was notable for the fact that the authors collected their data from January 1997-December 1998. The study was based in Italy, and my review of the medical literature (a cursory review of “related articles” in PubMed) didn’t find any US based studies.

I’m curious as to how this would go over here in the US. I would bet (although I don’t have any data) that many parents of children with cancer would have appreciate having a tape to review at later date. I would also bet (again, without any supporting data – just a hunch) that there would be very few instances of these tapes being used to prosecute a physician in the event that the patient suffered a bad outcome. Given the remarkable problems in health literacy (problems that involve both health care systems as well as patients) one would think that a tool as simple as a tape recorder would be more widely used for complex discussions such as informed consent for chemotherapy. I’m curious what Paul Levy over at Running a Hospital would say about this small idea. I’m also curious to hear what any parents of pediatric oncology patients (or oncology patients themselves) would have to say.

I think that now, being a little more experienced, and a lot more comfortable with the words that I use, I see the benefits to this technique to far exceed the risks. Moreover, I believe that offering parents the opportunity to tape one’s important discussions with them telegraphs a message of confidence and trust, and would go a long way to establish rapport at a very important moment in a family’s life.

When you care enough to send the very best …

I was driving back from my overnight moonlighting gig this morning … well, driving may not be the best word choice. I was inching my way down Route 1 in the middle of morning rush hour traffic, with my trusty coffee at my side and WBUR on the radio, and exercising my extraocular muscles by doing every other minute eye rolls during the report on the Senate’s inability to vote on whether or not to have a vote on a non-binding resolution regarding Iraq.

As you can imagine, I almost choked on my blueberry scone when I heard a little blurb reporting that Hallmark, the greeting card behemoth, has just launched a new line of greeting cards for “life’s more difficult moments”. Like (and I’m serious here) struggling with an eating disorder, quitting smoking, caring for an aged parent, miscarriage, and traumatic loss, such as someone dying in an accident or homicide. They have cards for thanking a hospice worker or organ donor’s family. Cards for waiting for test results. Oh, and of course, the new line of cards also includes those for people tackling cancer diagnoses, treatment, and hair loss. A $2.99 greeting card for chemotherapy-induced hair loss. My goodness.

As reported in this news story:

Others are more happy and even humorous, celebrating a year being cancer-free, nearing the end of chemotherapy or general encouragement for teenagers. There are even a few birthday cards encouraging the recipient to celebrate even though they’ve had a rough year.

Some cards feature whimsical or inspiring photographs – a baby making faces, a marathon runner – but the majority feature abstract designs or just words in flowing script. Card designers said they aimed for bright colors that matched the mood of the card, ranging from bright orange for the more hopeful cards to purples and blues for somber notes …

No topics were off-limits, said company spokeswoman Rachel Bolton, noting two cards that could be sent to gay people who have disclosed their sexuality. The cards don’t directly refer to homosexuality, only extolling the person to “Be You” or “This is who I am” or featuring a rainbow, a symbol of gay pride.

I suppose that this was inevitable. My question is why? The news report on the radio said that Hallmark was doing this in response to feedback from people indicating that they were unable to find cards to express these thoughts. Are moments in life like this so difficult to ponder that people would rather pay $2.95 to buy a pre-made sentiment than take pen to paper in order to write out their own thoughts and feelings? Have we become so used to prepackaged goods that we now need to look for something similar for our emotions?

Even the card writers seem to raise this issue:

Writing the cards proved a challenge because the messages were designed to take a more personal approach than the standard sympathy card, said card writer Sarah Mueller.

“You can’t send somebody who is seriously depressed a ‘cheer-up’ card because it’s insulting and it doesn’t help,” Mueller said. “That’s what depression does, is it makes you feel like you’re all alone. So just being able to write something, the attempt was just to say, I’m here.’ ”

Fellow card writer Linda Morris said society has become more open to discussing people’s feelings on difficult topics, such as divorce or drug recovery or serious illness, which is why people are demanding cards that deal with those issues.

“There was a time when we weren’t so detached, when writing a note to someone was very simple, when picking up the phone and calling was just what you did,” Morris said.

Have we really moved that far away from each other that we rely upon a faceless corporation to help us express our compassion for each other during times of illness or other difficulty? Are people really that averse to calling or writing someone with cancer? I’m not sure how I’d react to someone sending me manufactured best wishes instead of calling to ask me “are you OK?”.

A few weeks ago there was a flurry of stories about the difficulties that physicians face in having difficult conversations with their patients. After hearing this story, it is increasingly clear that this is not a problem solely with physicians. This is a problem with people in general in our modern world. These cards are not part of the problem – they’re a symptom.

Twisted Bowels

 

Ok. That’s a pretty unpleasant title for this rant, but then I awoke to an e-mail from one of the news aggregators I use proclaiming “FDA issues warning on rotavirus vaccine”.

I quickly turned to this story worried that the VAERS (Vaccine Adverse Event Reporting System) had picked up a cluster of intussception on the new oral pentavalent rotavirus vaccine. Here’s how the AP reported it:

FDA: Rotavirus Vaccine May Harm Infants

By THE ASSOCIATED PRESS
Published: February 14, 2007
Filed at 12:40 a.m. ET

WASHINGTON (AP) — The government warned on Tuesday of potentially life-threatening twisting of the intestines in infants vaccinated against a virus that is the leading cause of early childhood diarrhea. The condition, called intussusception, is the same that led to the withdrawal of the first rotavirus vaccine eight years ago.

The Food and Drug Administration said it was unknown whether the recently approved vaccine, called RotaTeq, caused the 28 new cases. The condition also can occur spontaneously. Indeed, the reports don’t exceed the numbers expected to occur naturally each year — the so-called background rate, the FDA said.

”It looks like this is the natural background rate that we are seeing,” said Dr. Michelle Goveia, medical director for pediatric medical affairs at the vaccine’s manufacturer, Merck & Co. Inc. Goveia suggested heightened concerns about the previous vaccine, made by Wyeth, prompted the FDA to act.

In Tuesday’s public health notification, the agency said it wanted in part to encourage reporting of any additional cases of intestinal twisting or blockage to help it assess any risks associated with the three-shot vaccine series. It also said the vaccine’s label would mention the cases of intussusception.

‘It’s a known serious, life-threatening adverse event that is being seen at an expected level postmarketing. But because it is so serious, we asked the company to change the label,” FDA spokeswoman Karen Riley said.

Dr. Paul Offit, the vaccine’s co-inventor, said the 28 reports were well below the hundreds of cases one would expect naturally. He suggested the FDA wanted to ‘’shake the tree” for more reports about the vaccine.

”I am actually encouraged by those data: 28 cases, when you would have expected at least 500 cases, that is really reassuring,” said Offit, of the Children’s Hospital of Philadelphia. ”I don’t see how those numbers suggest something’s awry. If anything, they suggest nothing’s awry.”

The 28 cases included 16 infants who required intestinal surgery. There have been no reports of deaths.

RotaTeq received FDA approval in February 2006. At the time, the FDA and Merck said trials of the vaccine involving nearly 70,000 infants indicated it did not increase the risk of intussusception. But Merck and the Centers for Disease Control and Prevention are conducting follow-up studies of tens of thousands more infants to track any long-term effects of the vaccine. The FDA also is monitoring reports.

About 3.5 million doses of the Merck vaccine have been distributed in the U.S., though not all have been used, the FDA said.

The earlier rotavirus vaccine, Wyeth’s RotaShield, was pulled from the U.S. market in 1999 after it was linked to a small increase in intussusception. It had been on the market a year.

In the United States, rotavirus sickens about 2.7 million children younger than 5, sends up to 70,000 to the hospital and causes 20 to 70 deaths each year.

Now, for anyone who knows a lick of pediatrics, it’s possible to find four major flaws with this story, flaws that reveal what are clearly the machinations of a bored and not-so-bright Associated Press flunkie who had nothing better to do than to twist an FDA release into a story designed to scare parents and physicians.

  • First, intussception is not a “twisting of the intestines”. It is a telescoping of the small bowel. Malrotations and intestinal volvulus (twisting of the intestions) are most definitely not associated with rotavirus vaccine.
  • Second, the current rotavirus vaccine is a three-dose, orally administered vaccine. Not a series of injections. It is hard to trust reporting on a vaccine when the author didn’t care enough to fact check correctly on something as simple as the difference between a vaccine given by injection and by mouth.
  • Third, the story buries in the second paragraph the fact that intussception is a naturally occuring phenomena and that the background rate in children is 1-4 cases per 1000 live births.
  • Finally, the story entirely mischaracterizes the FDA report (which you can read here and interpret for yourselves). The report clearly states, “FDA is issuing this notification both to encourage the reporting of any additional cases of intussusception that may have occurred or occur in the future after administration of RotaTeq (the vaccine brand name), and to remind people that intussusception is a potential complication of RotaTeq.”

I could go on and on about the clinical trial that preceeded the rotavirus vaccine, and also go on and on about the previous rotavirus vaccine and it’s safety issues (and perhaps later I’ll touch up this entry with a link to a fascinating NEJM article on the topic). But my point for this morning is that rather than take the time to accurately report facts, some healthcare journalists (or in this case, wire services) slap stories together with headlines designed to scare patients and families rather than inform them. I can’t wait to see what my friend Flea does with this one.