Don't Face It Alone

Just a pause from the wisecracking for a shout-out and some advice. Don't face your illness alone if you can help it. I don't.

My stalwart ally and zealous advocate through all of my adventures has been my wife, Kathleen. Starting with the tumor at the roof of my mouth in 2004, just two years after we were married, Kathleen has kept track of logistics, battled bureaucrats, and pushed me to seek care when I would rather stay home. She has come to every key doctor visit and taken notes, asked questions, and pointed out discrepancies. She has been there every time I have awakened from general anesthesia, and she has sat by my bedside, catching medical errors before they could cause me harm. While not a doctor, she is an expert on my health.

As a patient, I don't think like a doctor. I forget to ask questions, and I miss details. I often defer. Even though my doctors have all been very smart and dedicated, they cannot watch my health as closely as Kathleen does.

When you are a sick patient, you cannot depend on yourself to be at your best. Your judgement will be clouded by anxiety, denial and whatever mental effects your illness may have. You need an ally. As a doctor, I have seen this role played, not only by spouses, but by parents, siblings, children, nieces, nephews, friends, and neighbors. Look for help, and you will probably find it.

Thank you Kathleen. I love you, and I wonder if I would even be alive without you.

Tom and the Giant Zit

It's actually a bit premature to call it a zit. It could be a malignant zitoma,* but let me be an optimist for once.

[Warning: This gets really gross, but it's what's going on inside my head. Literally.]

As some of you know, I went to meet some surgeons yesterday. Since then, I've gotten a lot of questions such as,"do you have a date for the surgery." (What a silly question! K is always my date!) Anyway, I've tried not to give out too many spoilers. Here's what happened:

K and I drove back in from our Cape Cod vacation to Ben and Jerry's Hospital** (BJH) to meet with a couple of surgeons, the Clivus Dudes. These guys are two outstanding docs who specialize in endoscopic surgery*** of the skull base.  I'm so special, I get to have both of them operate on me at the same time.

They showed me my MRI. It's really unflattering. Radiologically sliced into hundreds of cross sections, I am one ugly guy. To make matters worse, my clivus is a goopy mess. The front and center of the bone have dissolved, and there is a grape-sized blister of fluid on it. This looks to me like a giant zit.

Theoretically, I could take a knitting needle, stick it up my nose, and pop the thing, but the Clivus Dudes want to clean out as much of the diseased tissue as possible, not to mention that they really need to be careful of my right carotid artery, which is right behind it. Then they'll send it all to pathology.

This should actually be a pretty easy procedure from a patient standpoint. Not much harder than a knitting needle. They will have to put me out, and I will be in the hospital for a night or two, but that's kid stuff.

However, in addition, there is a pea-sized collection of fluid (also probably pus) in the area behind my right eye. That's inside the braincase, so it's very creepy. It would be very hard to get with a knitting needle or with anything else for that matter. The Clivus Dudes will leave it alone for now. If the thing on the clivus turns out to be infection, antibiotics might mop it up. Otherwise, someone has to go in there and take it out, and that's a huge surgery. I'm not ready for that kind of fun.

After surgery, assuming this is a zit, I will need to apply my son's zit cream to the area from now on. Not really. I will need lot of antibiotics.

But, after all of that is over, I'll have to think about preventing it from happening again. Someone may have to reconstruct part of the inside of my face. That could keep this blog going for months.

The (first?) surgery will probably take place some time during the week of August 15th. Stay tuned.


*Zitoma is Doctor-Speak for a cancer that looks like a zit.

**This is my nickname for Brigham and Womens Hospital since Brigham's is famous local ice cream brand.

***By endoscopic, I mean that they use tiny instruments and a tiny fiberoptic tube--kind of a My First Colonoscope by Kenner)

By the way, here are some pictures to show what I'm talking about. I have this cheap plastic skull my parents got me for Halloween in 1982. It's not perfect, but it's pretty good for a prop:

This shot is looking into the top of the skull. The skull is facing up and to the left, and the two holes in that direction are the entry points for the optic nerves that come from the eyes. I am pointing to the clivus, which is where most of this is going on (luckily on the nasal side, not the brain side). 

The clivus is the part of the skull that starts from about where my finger is down to the opening at the bottom of the skull where the spinal cord exits. 

My finger is covering the entry point of the right carotid artery. The entry point of the left carotid artery is visible to the left of my finger. These are big, important blood vessels that supply much of the brain, so nothing you want to poke with a knitting needle.

The pea-sized fluid collection inside the braincase is directly above my finger (from the standpoint of the picture).

Below, the camera is looking up from underneath the skull at the roof of the mouth and behind it. I am pointing to the nasal side of the clivus. The hole to the left of my finger is the for a post on which to display the skull. Most people don't have one of those.

Tumoriffic Rides Again!

Radiation, the Gift that Keeps on Giving!

You ever get that feeling that it's just too quiet? Well, it has been that way for me. Since the giant clivus* booger** in 2012 (see earlier posts), nothing truly exciting has happened in my health. For me, it's a kind of writer's block. Well, that just changed.

A few minutes ago, I got a phone call from Jill, my awesome NP at the Perini Cancer Survivors' Clinic at Dana Farber Cancer Institute. My yearly surveillance MRI shows something growing in my clivus, and it is extending into my braincase.*** That may not be as bad as it sounds. Jill has already gone over the films with a neurosurgeon at Brigham, and the neurosurgeon thinks the most likely diagnosis is post-radiation inflammation, which, relatively speaking, sounds delightful. On the other hand, I'll still need a biopsy to be sure.

The next question is, how do they get to this thing? It's on the wrong side of my clivus. If it were on the right side, someone with a really long, skinny finger could just scrape a bit off with a fingernail, but it's not. So, can some enterprising surgeon drill a little hole through my poor, beat-up clivus and snap up a bit of whatever it is? Or does someone have to crack open my cranium and get through one of the busiest, hardest-to-reach places ever. Probably the former, but it's always fun to get anxious about worst-case-scenarios.

So, expect more news over the next few weeks. Here we go again.

Love,

Tom

*The clivus is a bone in the skull. On one side of it is the back of your throat. On the other side, your brain. It was also a name we used to call each other in medical school.

**A booger is a nasal accretion of dried mucus (which is a type of schmutz). In this case, it wasn't literally a booger. It was a bone infection, but it's more comforting to think of it as a booger.

***Specifically, in the middle cranial fossa for all you medical geeks out there.

Massachusetts CDC Budget (State Public Health Laboratory Institute) Update

Quick budget update. (See previous post for details.) My friends and I have been hitting the State House and getting co-signers for Rep. Campbell's amendment. So far, we have Kane of Shrewsbury, Pignatelli of Lenox, Gentile of Sudbury, Balser of Newton, Keefe of Worcester, D'Emilia of Bridgewater, Khan of Newton, Koczera of New Bedford, Cantwell of Marshfield, Ultrino of Malden, Provost of Somerville, Barber of Somerville, Garballey of Arlington, Hecht of Watertown, Malia of Boston, Ashe of Longmeadow, Sannicandro of Ashland, Ayers of Quincy, Linsky of Natick, Benson of Lunenburg and Schmid of Westport, Stanley of Waltham/Lincoln, Smizik of Brookline, Dubois of Brockton and East and West Bridgewater, and Devers of Lawrence. If one of these is your legislator, please call and thank them.

That's the highest number of supporters we have ever had. We're going to continue to shake the trees for more until the deadline on Friday.

Unfortunately, given the undemocratic structure of the House, the only thing that really matters is the opinion of the top leadership. That mean Speaker DeLeo and Ways and Means Chairman Dempsey. In the next step, they look at all the amendments submitted by members and put the ones they like in the Omnibus Amendment. That always passes, so if we are in it, we win. If not, we lose. Our numbers may push them in the right direction, but sometimes, they cannot be swayed. We will keep our fingers crossed.

Please call your legislator (http://www.wheredoivotema.com/bal/MyElectionInfo.aspx) and ask them to sign on to Campbell's Amendment 1036. Also, call DeLeo (617-722-2500) and Dempsey (617-722-2990) and ask them to include it in the Omnibus Amendment.

Playing Public Health Chicken: Urgent! Share! Contact your Massachusetts Legislators ASAP!

Urgent! Please share this on Facebook:

Yesterday, I had my heart broken. To be frank, it was predictable. It has happened in the same way many times before.

For 13 years, my citizenship passion project has been tuberculosis and more general public-health-disaster-preparedness in Massachusetts. Our state and regional CDC (the Massachusetts State Public Health Laboratory Institute) is New England's bulwark against infectious potential epidemics and threats (TB, Ebola, mosquito and tick-borne illness, rabies, bioterrorism, chemical hazards, food poisoning, etc.), chemical hazards, and bioterrorism. And, for 13 years, as my colleagues and I have worked every budget season to educate legislators and attract press attention, the federal share of its budget has dropped, and state contributions have waxed and waned, a step or two forward, two steps or three back. With each shift in legislative leadership, we have to persuade a new crop, and they retire or fall to scandal, we start all over again. Each time, more essential staff are eroded away, retiring seeking stabler lives elsewhere and taking hundreds of years of collective expertise with them.

I almost built my career around it, but my rapid succession of tumors caused me to abandon my plans to become an infectious disease specialist. But, still, I have stuck to the original foundation.

This was the worst year. This year, I put in more effort than I have in a long time. The Massachusetts CDC is beginning to show the cracks that my colleagues and I have long warned would appear. We hear a new desperation of our hard-working friends on the inside as they struggle to maintain our defenses. This new threats have emerged, such as West Nile Virus, new Borrelia species (a group of tickborne illnesses that includes Lyme); Middle East Respiratory Syndrome, and Ebola; old diseases have reappeared (measles, mumps, whooping cough--'thanks,' anti-vaxers!) or morphed into worse monsters (multi-drug resistant tuberculosis); terrorists have attacked (marathon bombers). I really thought that we had an iron-clad case. The rank and file of the legislature seem to have been persuaded, but those at the top are focused only on indiscriminate fiscal austerity even as a terrifying TB crisis took place in Speaker of the House Robert DeLeo's own district, Winthrop (http://commonhealth.wbur.org/2016/04/tb-cuts-zika-ebola).

Yesterday, the Massachusetts House Ways and Means Committee budget recommendation for the Institute for FY17 came out at $12.2 million (3% of a total Massachusetts state budget of $40 billion). This has dropped from the inadequate $14.1 million in FY15. The Institute, instead being able to respond to infrequent by inevitable public health disasters by getting staff to work overtime and keep the Institute running well 24/7 for weeks, can, at best, limp along 24/5. There can be no cavalry to ride quickly to the rescue, since the CDC in our region is the Institute.

I will recover. I always do. My main partner in the endeavor, Cynthia Tschampl, and her boundless energy, will rally me again. Ways and Means may be stingy, but there is an amendment to push (thank you Rep. Cambell! https://malegislature.gov/People/Profile/LDC1) in the House, and the Senate to persuade.

If you live in Massachusetts, go to http://www.wheredoivotema.com/bal/MyElectionInfo.aspx and find your Massachusetts representative. Then, click on the link to get their contact info. Call and leave a message or e-mail them. Tell them you do not feel safe with our public health system disarmed and ask them to sign on to Cambell's amendment for a $13.1 million dollar budget for the State Public Health Laboratory Institute by contacting Sascha Alach in Rep. Campbell’s office before 2:00pm this Friday the 15th, or at least by Friday the 22nd by e-mailing sascha.alach@mahouse.gov or calling x8463. And you can contact Ways and Means Chairman Dempsey (Brian.Dempsey@mahouse.gov / 617-722-2990) and Speaker DeLeo (Robert.DeLeo@mahouse.gov / 617-722-2500/Robert.DeLeo@mahouse.gov) and tell them this cannot continue.

And be well, everybody,

Tom

Magic Seatbelts and Measles; and why I am truly upset.

A patient says that they were in a car accident once without a seatbelt. They got a few bruises, but it wasn't so bad. In fact, they have had friends who died because of seatbelts, because sometimes, seatbelts do that. They correctly point out that most accidents do not kill you even if you are not wearing a seatbelt. (This is true. In fact, I wouldn't be surprised if the chance of death from an accident without a seatbelt is less than 1 in a 1000.) And seatbelts make them uncomfortable, so they think seatbelts are a terrible idea. Even a conspiracy of Big Auto. (This is not just allegorical. People do say these things.)

What if there were a magic seatbelt? For only $2, you could wear that seatbelt twice and reduce your chance of dying in a car accident or ever even getting in a fender bender by 95% and would protect the drivers around you. What if, if everyone alive today did that, no one would ever get in a car accident or have to wear a seatbelt ever again? Who would be a seatbelt skeptic then?

*   *   *

Measles kills 1 in a 1000 people who get the disease. Most people who get it have an uncomfortable illness that leaves no lasting damage. That's nice for them. But this most contagious disease on Earth can infect a lot of people, and that means that it kills a lot of people.

But there is a 'magic seatbelt.' For $2, a pair of doses of the vaccine reduces your chance of getting the measles by 95%. (It reduces your chance of dying of it by more, but I don't know that number.) Now, like a seatbelt, it can be uncomfortable, and, in a infinitesimal number of cases it kills. But, since there are no animal vectors of the disease, through herd immunity, it would possible to eliminate measles entirely, making the vaccine obsolete.

In 2013, AIDS killed 1.5 million people. In contrast, in 1980, before the vaccine was widely available, measles killed 2.6 million people, most of them children under 5. In 2013, when 84% of all children had received at least one dose of the measles vaccine before age 1, measles caused 145,700 deaths. Meanwhile, in the United States in the years just before the vaccine was introduced, there were about 450 deaths a year, but there were 48,000 hospitalizations and 4000 cases of encephalitis (brain inflammation) with high risk of permanent impairment.*

The fact that anyone would think to stand in the way of a vaccine that prevents millions of deaths each year is unfathomable. The fact that people believe that there could be an evil conspiracy to spread a vaccine that could cause its own obsolescence is amazing.

And I do take it personally when people who have not spent decades studying this sort of thing not only disagree, they publicly shout their opinion. Not only are they telling me that one of the most valuable tools of my calling is evil, they are telling me that my friends, colleagues, and I are fools or monsters. My pediatrician colleagues lose money administering vaccines that are undercompensated by insurance companies and overpriced by pharmaceutical companies.

So, yeah, I have a chip in my shoulder about this issue.

PS: Maybe the antivaccine movement is a conspiracy of Big Pharma. If the measles vaccine is used widely enough, they will never be able to sell it again. The smallpox vaccine was such a bust! If they keep this antivaccine thing going, they could rake in the profits forever! That's it!

* http://jid.oxfordjournals.org/content/189/Supplement_1/S1.long

Death by a Thousand Clicks

The Giant Experiment That is Killing Medicine

Introduction

What if you and everyone you know were the subject of a giant medical experiment? What if no one warned you or asked your permission before including you? What if that experiment drastically changed everything your doctor did? Guess what? That's exactly what started in 2009, when Obama passed the Health Information Technology for Economic and Clinical Health Act (HITECH Act). This is not the same thing as the Affordable Care Act (a.k.a., Obamacare), and I think it is far more ominous.

The HITECH Act allocated $44 billion of Medicare and Medicaid money to subsidize the adoption of privately-made, government-certified ‘Electronic Health Record’ (EHR) systems, and encourage (bribe and penalize) medical practices and hospitals to use them to carry out certain tasks in patient care. These tasks are called 'Meaningful Use' (MU) of the EHR as defined by regulation.

As time progresses, the bribes will taper to nothing and become penalties levied on practices or hospitals that do not reach these goals will have to pay penalties. So, effectively, HITECH is forcing doctors and hospitals to adopt these private programs for all of their patients or stop accepting Medicare and Medicaid--which means stop serving most of the sickest patients.

Based on my personal experience, I think this program misses the forest for the trees and sets up a series of incentives that impair doctors’ abilities to help patients. It is a reckless, unethical experiment, which, if it were a pharmaceutical, would be illegal. No one should have the authority to impose such a change on the entire system without scientific evidence that it will improve the concrete outcomes of longer, healthier, and happier lives.

Part 1. The Mismeasure of Medicine

There are dozens of Meaningful Use goals. Many seem appropriate for individual patients. Some seem deeply flawed to begin with. The sum of all of them may do more harm than good.

One Meaningful Use measure that at least seems sensible, at least in individual cases, is the requirement to document smoking status. But does documenting in the medical record the smoking status of every single patient lead to fewer patients smoking over all? Does it lead to fewer heart attacks and cancer and extend lives? How do you know the documentation is accurate? Are there more efficient ways to approach smoking? Apparently, nobody has tried systematically to find out.

There are Meaningful Use measures that are based on science that is in dispute or becomes obsolete before regulators can adapt the regulations. For instance, blood pressure control is one Meaningful Use measure, but acceptable systolic blood pressure for a diabetic patient over the age of 60 has gone up by 10 points since I have been in practice. So steps I took a few years ago trying to comply with this goal may have actually harmed my patients.

Meaningful Use does not necessarily measure real world activity. It is data entry, and data entry can be manipulated to suit the person entering the data. I can meet Meaningful Use goals to minimize inappropriate antibiotic prescription by describing the same symptoms as ‘cough’ instead of ‘bronchitis.’

Meaningful use takes money and resources away from interventions proven to work. There are hundreds of thousands of bureaucrats dedicated to implement this program that has no proven positive impact. In a world of limited resources wouldn’t it be better to improve access to prenatal care or life-saving medications? How about reimbursing mental health work decently?

Most personally galling to me, my time spent even on worthy Meaningful Use goals may take away from my time spent pursuing goals that are more important but not measured or even measurable.

There is the time learning these measures that I could otherwise spend learning more medicine. Lunch meeting after lunch meeting is taken up with Meaningful Use lessons. I would rather discuss the evidence behind new hypertension recommendations, or how I can best care for a difficult case.

And there is my time with the patients. I get 15 minutes for most visits. Many doctors get as few as 8 minutes. The average is 12. Meaningful Use takes a lot of that time. When can I comb through the record and catch mistakes or opportunities to improve care? When can I listen closely to my patient and examine them carefully? When can I look into their eyes and explain my reasoning in plain language? When can I practice meaningful medicine?

I am ready and willing to learn new rules and do boring, repetitive tasks, but only if they lead to meaningful outcomes for my patients—years of happy, healthy life. Until Meaningful Use has been proven to do that, it is a game for harvesting government money at the expense of patient care and the biggest unethical experiment of our time.

Next: Part 2. Electronic Health Records, the Hope, and the Reality

Center for Medicare and Medicaid Services Guidance on Meaningful Use

Campbell-Scherer, DL, et. al., ACC/AHA Guideline Update for the Management of ST-Segment Elevation of Myocardial Infarction, Am Fam Physician 2009:79(12)1080-1086.