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Saturday, September 24, 2016

My week in ultrasound

After 5 years of doing bedside ultrasound, I'm still excited about it. Bedside, or Point-of-Care ultrasound is using an ultrasound machine during the physical examination of a patient in order to make a diagnosis. I use a pretty tiny machine that fits in my pocket. As an internist who works in the hospital and in rural clinic outpatient settings, I get to use my ultrasound all the time, and it's still lots of fun. (For more on adventures in ultrasound see this or this or this.) Those of you who have read this blog for awhile can skip the intro and go to the cool cases.

When I talk about it, most people who haven't already heard me wax eloquent say, "you mean you look at babies?" Ultrasound has been used as a bedside tool for looking at pregnant wombs for a very long time. It is extremely useful for that, since you can see if the baby is alive, about how old it is, whether their are two, what position it is in and a number of other useful things. I would never give up the chance to look at a baby if my patient were pregnant and willing, because they are so cute, but since I am not an obstetrician, I look mostly at other things. I can see whether the heart is failing, whether there is extra fluid in the lungs or belly, whether the kidneys are blocked, whether the bladder empties. I can see pneumonia and broken bones, tell whether a swelling is full of fluid and whether a lump is solid or a cyst. I can see disease in blood vessels and stones in gallbladders. Combined with talking to a patient and doing my usual physical exam, I can determine whether a patient is dehydrated or the opposite and can often be more accurate about diagnosing blood clots or sepsis. It's cool. Yes indeedy it is.

This week I worked as an outpatient doctor in clinic and also in the hospital, admitting and taking care of sick patients. I use the ultrasound nearly every time I examine a patient and it always helps, but there were some cases in which it was more spectacularly useful than in others.
  1. A patient in clinic had pain in her head and cheek and teeth on the right side 3 weeks after getting a cold. She had a long history of allergies and sometimes used a nose spray or an antihistamine, but this was worse than usual. On exam there were polyps in the nose and maybe a little bit of tenderness in the right side of her face. It is possible to use the ultrasound on the sinus bones behind the cheek to see if there is fluid, because fluid transmits ultrasound and you can see the back wall of the sinus only if there is fluid in it. I could see the back wall on the right, the side with symptoms and not on the left. I diagnosed a sinus infection. She will try nasal steroid spray and washes to see if things can open up and drain, and if that doesn't work, she has a "pocket prescription" for an antibiotic which she can fill and take. I also looked at the teeth on the right with the ultrasound and found no evidence of an abscess, which was reassuring.
  2. Another patient in clinic had stubbed his toe pretty hard. It had swollen and then swollen some more and he was concerned about an infection. The clinic does not have an x-ray machine and is a pretty long drive to the closest one. Beside the cost, it takes an hour of a patient's time to wait, fill out papers and then have an x-ray done, plus I will usually then wait another hour for results and the patient will then be difficult to contact. I was able to ultrasound the toe, find a non-displaced fracture at the point where he was tender and give an explanation plus an appropriate set of recommendations.
  3. At the hospital I had a patient who had been admitted with low blood pressure and likely pneumonia along with blood enzyme tests suggesting a possible heart attack. He responded well to antibiotics and fluids and, due to having lots of chronic medical problems, wanted to avoid being transferred to a larger hospital to see a cardiologist. I knew from previous visits what his heart looked like with ultrasound and could tell him that it looked no worse, which meant that an emergent visit to the cardiologist was not necessary. I was able to use the ultrasound of the heart at the time of our conversation to help guide our shared decision-making about whether to get in a helicopter and head far away from family and friends.
  4. Another patient had severe pancreatitis, an inflammation of one of the nastiest and most caustic organs in the digestive system. He was 80 years old and drank too much whiskey on a daily basis, which caused the pancreas to become angry. After a day or so he developed an acute alcohol withdrawal syndrome, trying to crawl out of bed, anxious and with an elevated heart rate. We treated him for the alcohol withdrawal, but his heart rate remained elevated. Was he dehydrated? None of the other labs gave me the information I needed, but ultrasound of the inferior vena cava showed that he had been adequately hydrated and that, as expected in severe pancreatitis, there was some fluid in the belly and at the base of the lungs, so more fluid would make things worse rather than better. I was able to repeat the ultrasound daily to determine how much intravenous fluid to give.
  5. A young man, with a history of longstanding intestinal inflammation and several operations in the past, presented with abdominal pain. X-ray was pretty normal, but can be hugely misleading. A CT scan would have been helpful, but is associated with a high radiation dose. He had undergone many CT scans in his life and the possibility of his developing cancer on the basis of his radiation exposure was already significant. I was able to look for fluid in the belly or fluid filled loops of bowel which would suggest obstruction and feel pretty confident that a non-surgical approach to his problem was safe. 
It was a good week. Nobody died. I felt competent. Patients were happy. Bedside ultrasound was terrific.

Sunday, September 18, 2016

What's wrong with socialized medicine? The Economist calls the National Health Service "a mess"

The British National Health Service (NHS) was born in 1948, based on legislation passed that year mandating free high quality healthcare for all paid by taxes. In contrast, the US started Medicare in 1966 to provide healthcare to the elderly and the State Children's Insurance Program (SCHIP) in 1993 to fund healthcare for children whose parents were unable to afford it. Healthcare in the UK is still almost entirely funded by the government (through taxes, of course), which it is not in the USA.

Britain is proud of the NHS, and rightly so. They have it figured out. Or so it would seem. Everyone can get care and nobody goes bankrupt because of huge medical bills. Brits do have to pay for prescriptions but everything costs the same, the equivalent of $11 per month.

So why would the Economist, the global news magazine based in London, call it a mess? This article says that the NHS is in trouble, and needs to learn some new tricks in order to stay effective. It turns out that Britain only spends 7.3% of its gross domestic product on healthcare which is significantly below average for its peers in the Organization for Economic Cooperation and Development (OECD) countries, and plans to cut that expenditure to 6.6% in the next year. Because their population, like ours, is aging, costs of care are actually rising so already pinched services are being further curtailed. Because of the high costs of caring for patients with complications, some local health commissions will not provide routine surgery to patients who are obese or smoke cigarettes. General practitioners are overworked and can't provide the kind of preventive services that keep patients out of the hospital and nursing homes are unable to house all of the patients who need their beds so those patients stay in the hospital, limiting the beds available for sick people or people needing surgery.

The US, in comparison, spends over 17% of its GDP on healthcare, at least 5% more than the next highest OECD country. Most of our problems are not due to stinginess of payers, but rather to distribution of healthcare dollars, with some people having no access to affordable medical services and others receiving care that is very expensive which they may not need or want. Many of us long for a fully government funded healthcare system like the NHS.

So what has gone wrong with the NHS, then? I'm not entirely sure, but I have some ideas. Since the government is the payer for services, they have the ability to limit funding. Because of the inevitable waste that goes on with the provision of medical services, it could well be that 6.6% of GDP is plenty to provide good healthcare. It is not enough right now with the system they have. Because the government pays for services regardless of whether the consumers find them to be of good quality, there is no direct incentive to please the patient. Because doctors don't know how much things cost, they are less able to be good stewards of resources. Their healthcare delivery is therefore inefficient, and reducing funding has not made it better.

We do have similar problems in the US, with both lack of knowledge about what things cost and lack of incentive to do things better or more efficiently. Because the government is not the only payer and so cannot put a cap on payment for healthcare, our system is much more expensive. Our hospitals are prettier and our technology is more snazzy and we probably do more miracle cures per capita.  But citizens of the UK have universal access to medical care and nobody goes bankrupt because of medical bills.

Since healthcare per the NHS is not what we want, but we do want universal access with good quality and lower costs, how shall we do it? Americans have enough mistrust of government, and fiscal conservatives are absolutely allergic to the federal government being the sole provider of health insurance, so we will not get "socialized medicine" anytime soon. The Affordable Care Act (ACA, also known as Obamacare) has improved our situation considerably. Expanding Medicaid to cover Americans whose income is at or below 138% of the federal poverty line has helped in the 31 states that have adopted that (my state, alas, is not one of them.) It is now easier and cheaper for the rest of us to get insurance, which helps avoid catastrophic and crushing medical bills. But even people with health insurance go bankrupt due to their share of healthcare costs, combined with inability to work. Footing part of our medical costs is supposed to help us make more frugal decisions, which is one of the reasons most healthcare proposals have included some kind of a deductible ("cost sharing.") Unfortunately most patients don't have the information they need to make frugal decisions and their doctors don't know enough about costs or other options in many cases to help them do this.

In the JAMA (Journal of the American Medical Association) an article reported that an intervention to give doctors information on costs of the various aspects of their patients' care as well as a look at their outcomes significantly reduced costs while improving hospitalized patients' health. This seems obvious. Of course knowing what things cost and how a patient fares will make us do a better job and not cost so much. The strange thing is that this is not standard practice. We don't know what the tests and procedures we order actually cost. And most of us don't get a longitudinal view of how a patients illness or surgery actually turned out.

So if we could have any system at all, what would be best for us here in the USA? I'm not sure it actually matters, as long as we get what we need and so long as there is enough shared knowledge about what things cost, how well they work and what are the alternatives. The direction we have gone, with private and government funded insurance has lead to our present situation. But if the insurance companies paid physicians to take care of patients, and how much we actually made depended on providing the most appropriate care that caused the least unpleasant impact on patients' lives, costs would go down and care would improve. This would require that patients' voices be heard. It would require that doctors knew what was good value and the healthcare industry was encouraged to create options with better value. A single government payer could do this, but not without built in systems to feedback what patients value and what actually works and innovate actively to improve quality.

Thursday, September 8, 2016

T-mobile and medical billing nightmares--a rant

A few months ago I had a clever idea about how my husband could use my cell phone in England, because getting cell phone service across the Atlantic can be expensive and inconvenient.  

So I had this bright idea. I have an unlocked smartphone that I use in Africa or Haiti with a sim card that I can buy there cheaply and with no difficulty. T-mobile, the cellular phone provider that began as a German company and has provided competitive service in the US, advertised that their service would also work in the UK and Europe and that it would include unlimited data. Or something like that. It sounded great. I would just buy the T-mobile sim card in the drugstore here, get the service and be good to go. But not so fast. T-mobile does have the no fuss pre-paid option, but to get the international service requires a different plan, with a monthly fee. After attempting to do this online, then converting to the monthly service, nearly losing the money I had mistakenly spent on prepaid minutes, speaking to operators working out of many non-English speaking countries, whining and finally prevailing, I signed up. Unfortunately T-mobile didn't work in most of the places my husband traveled and didn't work at all in my community. No big deal, live and learn, and I never received a bill. Cool. It didn't work and I didn't have to pay. Eventually they notified me that my service had been discontinued. All good.

Then I got a notice that my account had been sent to collections. $185.00 I owed. I called, spoke to people from many countries, raised my voice, heard vile hold music, spent an hour predominantly on hold, closed my account, and assured the poor folks at the call center that I didn't intend to pay for a service that had never worked and for which I had never been billed. As I delved more deeply into what had happened, I found that they had notified me of billing, via the cell phone that had no service where I was. When I tried to log in to my account at their website to look at an itemized bill, I no longer had access due to having closed my account. I fumed and felt myself to be ill used. At last I paid the bill in order to never have to speak to them again or listen to their hideously distorted hold music. Probably worth it. I will think of it as a fine for making a poor choice. I did research other customer complaints regarding T-mobile and found that mine paled in comparison. It could have been so much worse.

But the whole experience did make me much more viscerally aware of how my industry treats people who owe money. I consider T-mobile to be a bunch of amoral and powerful extortionists. But the same kind of thing happens to thousands of unsuspecting medical consumers when they unwittingly spend huge amounts of money on medical care. Take, for instance, a person hit by a car. Insured or not, they will be billed for some portion of their medical care in emergency rooms, surgery, intensive care and for their general medical hospitalization. As they lie helpless in the hospital the bills will likely arrive at a mailbox that is being emptied and put in a shoebox by a neighbor, possibly under a utilities bill that is more important or likely lost amid catalogs, and certainly confusing as heck once they are opened. Hospitals and doctors are not shy at all about sending unpaid bills to collections. When the unfortunate car accident victim finally gets home after rehab, the collections agency will likely have reduced the information in the bill to a single heart-stopping number without any itemization or information about how to dispute it (such was my T-mobile experience.) The Consumer Financial Protection Bureau documented in a December 2014 report that just this sort of thing happens frequently due to the complexity of medical billing and insurance payments. People sent to collections for medical bills often have completely clean credit histories and didn’t pay those bills because it was never quite clear who owed what and to whom. (For more info on medical billing, read this blog.)

I can choose never to deal with T-mobile again if I want. Also my bill was only $185, which is a lot for nothing, but will not bankrupt me. Medical debt is the major cause of personal bankruptcy and a decision to never receive medical care again can have devastating consequences. Sometimes, as a person who is supported by healthcare dollars obtained in part from heinous billing practices, I wonder if I'm really one of the good guys.
(I would like to see a system in which medical care cannot destroy a person financially. This will involve reducing what we spend on it by getting rid of wasteful practices that do nobody any good, simplifying the payment system and assuring universal access to what we can agree are necessary medical services. But that is a story for another day…)

Tuesday, July 26, 2016

The "Yearly Physical"


"I'm going to the doctor next week for my yearly physical."

So normal. Of course you are. Everyone should do that.

But the concept of a yearly examination of one's whole body to see if everything checks out fine is a relatively new invention and whether or not it is necessary is a very controversial question.

I just read an article by Abraham Verghese, an internist and champion of physical diagnosis, professor at Stanford University, inspired writer, about the history of the physical exam. The idea that physicians could know more about a person than he or she could know about him or herself has only gained traction in the last century and comes partly from the invention of gadgets such as the stethoscope, the reflex hammer and the blood pressure cuff which reveal truths only to those of us skilled in their use. Enthusiasm for these has waned a bit as we have become enamored of our ability to see the shadows made by bones and such during an onslaught of electrons (x-rays), or the ability to check the levels of molecules and minerals in the fluids of our bodies, among other technological miracles. This evolution which takes us away from the bedside has also made us less confident in and also less dependent on the information we get by physically examining our patients.

We love what we can measure and correlate, and the physical exam is part of that process. If we can feel an enlarged spleen or liver, that is correlated with certain disease states, but certainly not always. If we can feel lumps in the breasts, testicles or thyroid, there may be something life threatening going on. Or not.

As doctors, we are trained in the nuances of the physical exam. I learned how to examine every orifice and surface, looking for specific abnormalities, and then developed skills over many years in understanding the wide variation in normal people. My physical exam is a conversation with my patient's body which happens simultaneously with a verbal conversation, which in itself is a kind of physical examination. How a person speaks, what interests them, how they follow the conversation are part of the neurological and psychiatric examination. As the physical exam unfolds, my understanding of a patient and my relationship with him or her deepens.

Does a physical exam save lives? I'm not sure. The definitive study will never be done. Only a small subset of what we do at the time of a physical exam has been rigorously studied and found to be of benefit. What a physical exam should entail has never been adequately worked out and there is no consensus. A pelvic and rectal exam, synonymous for some people with a "complete physical" have not been shown to have value in a patient with no symptoms in those areas. These and other parts of a "routine physical" may lead to overdiagnosis: finding something wrong that leads to more testing or treatment that does not improve or lengthen life. Nevertheless, it seems likely that a physical exam, done well and mindfully, is substantially valuable.

If it is valuable, shouldn't we all be getting one, yearly at least? Not necessarily. Plenty of people are healthy and will remain healthy without a doctor doing anything at all to them. "Health checks" were studied by the Cochrane Collaboration and found not to improve morbidity or mortality. There are a few things that would be good to check if you are feeling healthy, just to make sure all is well, though.  It would be good to measure blood pressure  or screen for HIV or hepatitis C for people at risk. If a patient somehow hasn't heard that it is unhealthy to smoke and be inactive and morbidly obese, ride a motorcycle without a helmet or drink and drive, it may make sense to impart this wisdom.

Medicare does not cover a general physical in the sense that most people think of it. What it does cover is a "Welcome to Medicare Physical" right after becoming insured under Medicare, which involves some screening that is important for determining risks and needs, and a yearly "Wellness Visit" which involves only vital signs and some screening tests along with advice on what is presently being recommended, stuff like mammograms, pap smears and colonoscopies. Patients are often put off by this because they don't like scripted interactions with their doctors, and doctors are put off by it because we have usually not memorized the script and some of us are not sure we agree with it.

Is a physical exam a good idea then? And should it be performed yearly on everyone? I, personally, would prefer that I have a chance to have unstructured time to physically examine and interview my patients yearly, in other words to do a physical. I would like them also to get information about what the evidence says about various screening tests and I would like that to be easily accessible in the medical record, but I don't necessarily feel strongly about being the person to offer that information. Perhaps a nurse or a health educator could do that better. I recognize that insurance companies may not cover a complete exam for a person who is healthy.  For this reason, a physical exam may need to be scheduled as a prolonged visit to discuss multiple health issues. Taken as a whole, and not because it is based in scientific evidence, I favor the physical exam. I also would completely forgive anyone who preferred to skip it.

Tuesday, July 19, 2016

Preventing Cervical Cancer in Tanzania

I visited Tanzania again this summer, once again helping a group of amazing University of California, Irvine medical students with their summer not-a-vacation trip to teach bedside ultrasound and do other research projects. 
One of the projects this year sprung out of a request by a doctor we have worked with on Ukerewe Island. The island he serves is rural, primarily supported by fishing, and has a high rate of sexually transmitted diseases due to fishermen visiting prostitutes on the mainland and bringing home infections to their wives and girlfriends. This translates to high rates of HIV infection, pelvic inflammatory disease and the spectrum of disease caused by human papillomavirus (HPV). HPV can cause genital warts, which are only mildly distressing, but it can also set in motion cellular changes of the cervix that can lead to cervical cancer. Tanzania has a distressingly high incidence and death rate from cervical cancer and this Tanzanian physician asked one of the students if we could do a project that would help reduce cervical cancer.

The high mortality and incidence of cervical cancer in sub-Saharan Africa can be (and has been) addressed in many ways. Primary prevention would involve using condoms or maintaining celibacy or reliable monogamy. We have a vaccine now that can prevent persistent infection, but it is still very expensive and not used much in resource poor countries like Tanzania. Pap testing is the method we use in the US to prevent cervical cancer, and its use is widespread and effective here. It involves taking a sample of the cells of the cervix during a speculum exam, sending this to a pathologist for evaluation, and repeating that test at regular intervals. Abnormal pap tests are reported to the patient who is notified to return for further testing and eventually removal of the infected tissue if it persists. The abnormal tissue is visualized by applying acetic acid to the skin of the cervix, then using a cervical microscope or colposcope to either biopsy, cut or freeze away abnormal tissue. In most of Africa this is not even vaguely practical since women go to the doctor infrequently and speculum exams are not often performed. It is not always practical to contact people by phone, and they often come from far enough away that returning for multiple visits to deal with an abnormal pap is not likely to happen. In addition, were physicians to start performing regular pap testing, there are not enough pathologists to process the specimens.

About 10 years ago I read an article in one of the large medical journals which described an abbreviated screening test for HPV infection in which vinegar (acetic acid) was applied to the cervix, abnormal areas that looked HPV infected were identified with the naked eye and those areas were simply frozen, destroying the infected and precancerous tissue. This sounded amazing. Since then this procedure has become well accepted, though certainly not universally available, to people living in many African countries. The World Health Organization has studied it and pronounced it to be practical and recommends it for resource poor settings.

The students heard about an organization, CureCervicalCancer, which teaches healthcare workers visual inspection with acetic acid (VIA) and supplies a gun which can deliver compressed carbon dioxide (available in poor countries because it is used to make soda pop) to the infected tissue of the cervix, to freeze it off.

This year several people affiliated with Cure Cervical Cancer came to Tanzania with us, trained Tanzanian MD and non-MD healthcare workers to perform visual inspection and cryotherapy and gave them supplies they would need to make the service ongoing.

The idea of being able to provide that kind of immediate and practical service was very exciting. I just thought it wouldn't work. Doctors and nurses in Tanzania are so overworked that I doubted they would come for a few days to learn a new technique. I also thought that a pelvic exam using a speculum would be a VERY hard sell for women who have never had a pelvic exam, especially since they would be feeling fine. I thought that the doctors wouldn't have time to continue to do these exams after we left. It turns out I was wrong: health care workers were enthusiastic and attended the trainings and women lined up for testing. 

The first day we had fewer patients than the leaders felt was acceptable, about 60 patients total I think. So the students who knew Tanzania from previous trips made flyers which they handed out, used their large word of mouth network and finally hired guy in a truck with a loud speaker to drive around the streets advertising the free clinic. The next two days doubled or even tripled the number of patients screened! Several cases of HPV infection were seen and treated and a few early cervical cancers were identified and referred for likely surgery.

This project may persist. They were able to train people from the city of Mwanza as well as Ukerewe Island and they promise to continue to do screening after we leave, free of charge. We shall see. There is some kind of audit planned for 6 months out. Clearly more nurses and doctors need to be trained to do this. This is clearly the right kind of screening to do in this setting and may reduce the burden of cervical cancer. In our screening clinic the host hospital also offered free HIV screening which was fantastic since treatment of HIV in Tanzania is free. Cervical cancer is more common and more aggressive in HIV infected women, so combining the screenings is really powerful.

I think this will help. I do have some reservations, though. In the US, 80% of people will be infected with HPV during their lifetimes, and the vast majority will kick it and have no ill effect. At any one time, I've read, 10% of women will have HPV infections. Only a fraction of the types of HPV that are out there are able to cause cervical cancer. The point here is that all HPV infection does not necessarily need treatment. We don't have evidence yet that VIA with cryotherapy saves lives, though it seems likely that it will and there have been mathematical models that evaluate this. VIA is, though, a sustainable method to treat HPV infection early and thus to prevent late sequelae including cancer  Clearly real prevention of infection would be the most valuable intervention in prevention of cervical cancer. This could be by vaccination, if the vaccine were affordable, or use of condoms to prevent transmission of infection.  More important even than that would be changes that allow women to have more control of what happens to them sexually. This will require improved education and economic opportunities so that women have value in the society outside of their roles as mates and mothers.




Sunday, July 10, 2016

My thyroid nodule

About 4 years ago I was examining my neck and discovered a nodule in the right side of my thyroid gland. I was examining my neck because I very rarely see a doctor and figured that I should at least cursorily examine myself to see if I could find anything of interest. My heart sounded fine, my lungs were excellent, weight was just right, pulse was nice and low, liver and spleen were fine, skin was slightly sun damaged but basically OK, blood pressure was a tad high and there was a small but definite lump in the right side of my neck.

Since I have a portable ultrasound, I looked at my thyroid nodule and found it to be about 1.8 cm, with some internal calcifications and a bright capsule. It was slightly darker than the surrounding thyroid tissue and had a few visible blood vessels.

I read about thyroid nodules and found that:

1. They are being noticed much more frequently because of increased use of CT scanning and ultrasound imaging.

2. They are very common. Nearly half of people will have significant, greater than 1 cm, thyroid nodules at autopsy.

3. About 5% of thyroid nodules are cancer, and cancer is more common in younger people, people with a family history of thyroid cancer, history of radiation to the head and neck, rapid growth of a nodule and larger nodules.

4. Experts generally recommend biopsy (taking a thin needle sample) of nodules over 1 cm in size.

5. Thyroid cancer is being overdiagnosed due to biopsies, because a needle can pick up a little bitty thyroid cancer which would never have been any problem over a person's life.

6. Some thyroid cancers will kill people. Most will not. It's hard to tell which will do what even after evaluating the tissue taken at a biopsy.

So I decided that if mine were a cancer which would cause trouble, it would almost certainly grow. I decided to follow it on ultrasound, measuring its size and watching what it looked like, and maybe get a biopsy if it grew.

It didn't seem to grow, at least not much. I was aware that it existed. I could feel it, though it didn't hurt. I was happy with my decision. Then I went to a talk about thyroid cancer at a major medical meeting. The speaker said that some thyroid cancers could grow very slowly over years and could still metastasize (spread to other areas.) Shucks. What if I got metastatic thyroid cancer? I could just imagine my family's displeasure. "It's a fool who has herself for a doctor." Also the expense, the plans forsaken. I decided to have it biopsied.

I went to a radiologist friend who said she had done many and assured me it would be painless. I scheduled it a week after my decision. I found that I needed a preoperative physical exam, which was a problem because I didn't have a doctor and hesitated to fill out my own paperwork because I figured I couldn't get away with it. So I had a physical exam which wasn't bad at all. I shuttled the paper copy to the radiology department. They still lost it, but eventually found it, and all was as it should be.

The radiology department is very familiar to me. I knew the smell and sound and paint color of the room in which I donned my hospital gown. The radiology technician gooped my neck with ultrasound gel and took about a million pictures of my nodule, measuring its length, width, height, observing its color doppler signal, looking for other nodules that might have hidden from my examining hand. My radiologist friend came in. We discussed things we agreed upon. We argued about the utility of mammography. That was probably not a good move, since she would then stick my neck with a variety of needles.

She numbed the left side of my neck with a lidocaine injection. I asked her if she knew that the nodule was on the opposite side and she reassured me that she hadn't been born yesterday and had performed this procedure before and knew exactly where my nodule was. She introduced a long needle from the wrong side of my neck into the nodule on the other side so as to avoid poking my carotid artery which was really quite close to my nodule. The bright shiny capsule turned out to be incredibly tough, requiring rather vigorous stabbing to get a sample. She then informed me that she recommended we do a core biopsy as well, since the pathologist appreciated a larger piece for evaluation. This was done through a type of coaxial cable. The core was taken with a gun which made a disconcerting thump as it removed tiny pieces of my thyroid. She showed me the little bottles with chunks of tissue it them. The hardware came out of my neck. Blood was mopped up.

It didn't hurt very much. Maybe a little like being strangled without the can't breathe part. Maybe not that bad, since I've never actually been strangled and wouldn't know. There isn't much numbing, just at the place where the needle goes into the skin because the thyroid itself has only dull pressure sensation. Swallowing is rather sore for a few days, however, because the thyroid moves up and down with every swallow.

Weeks later the bills began to arrive. I have medical insurance these days, through the hospital where I work. The total charges were $2,361. About half of this was for the ultrasound, about $300 was for the pathologist to read the slides. Another approximately $300 was to the radiologist, with free update on the utility of 3-D mammography and $500 was for supplies such as needles and coaxial cable. "Adjustments" due to using the hospital, which provides the insurance, for the whole procedure reduced the cost by a bit over $1000. So insurance paid $820 and I paid about $500.

The results came back "non-diagnostic." There was not enough thyroid tissue to be sure it's not cancer. Up to 20% of thyroid biopsies are non-diagnostic.

My initial reaction was that I was looking for cancer cells and they didn't find cancer cells and so I'm fine. It turns out that this is about right. There is a study from 2014 in which patients with non-diagnostic results on fine needle aspirate had a repeat biopsy (which I would not do because ouch, in so many ways). These patients almost never had cancer diagnosed, and almost all of those who did have abnormal repeat biopsies turned out to have false positive results. This means that they had a significant surgery removing a part of the thyroid and there was no cancer.

What I learned from my thyroid biopsy:

1. They are very expensive and the cost to even a well insured consumer is not small.
2. A thyroid biopsy is not painless. It is also not horribly painful. I do not want another one.


In the big picture, there is not a lot of value in routinely evaluating thyroid nodules with biopsy. There are 240 million adults in the US. About half of them probably have thyroid nodules greater than 1 cm. Performing an uncomplicated biopsy on all of them would cost about 240 billion dollars, assuming no repeat biopsies, diagnosing 6 million of them with cancer. Thyroidectomy and further treatment and followup of these diagnosed patients could easily cost that much again, adding up to nearly half of the US's yearly healthcare spending. A not insignificant number of people would suffer damage to their recurrent laryngeal nerve, limiting their ability to speak and sing, or lose the function of their parathyroid glands which regulate calcium balance. Of the cancers discovered, quite a few (hard to know the number) would never cause harm if untreated. Only about 1900 people die of thyroid cancer each year in the US and some of these are due to very aggressive cancers that will be fatal regardless of when or whether surgery is done. Despite an increase in detection and surgery for thyroid cancer in the last decade, there has been no change in death rates for this disease.

In the smaller picture, specifically the picture of an individual person with a lump in the thyroid, it is difficult to know what to do. Thyroid cancers can metastasize and kill a person. They just don't do that very often. Reassurance is valuable. Being diagnosed with cancer that would have caused no harm could be devastating. Being diagnosed early and avoiding death is priceless but extremely unlikely. As a doctor my practical approach should probably be to avoid searching for thyroid lumps in patients with no symptoms and to try to help those patients whose lumps come to light navigate the dangerous waters of further medical evaluation.


Thursday, June 2, 2016

Thinking beyond hospice

I recently attended the death of a friend at his home. He had a disease that was terminal and untreatable and he and his wife had finally decided on no further medical treatments that would require hospitalization. He was not very old and had been cared for by his children and wife during the previous 4 months that he couldn't care for himself. Time had become short and valuable and he had become weak, so he didn't amend his POST (Physician's Order for Scope of Treatment) to indicate that he wanted no resuscitation, though his wife and family knew his preferences. He had not entered hospice because his needs were adequately fulfilled by his family, friends, his physicians and home health.

When his wife noticed his breathing had changed, she called me, a friend of the family. I had offered to be available to come over for any medical situation in which they might need a rapid house call. I arrived about 15 minutes later and he had just died. I confirmed the situation with my medical gadgets. We were all sad and tearful and we talked and hugged and talked some more. I called the police, reported the death and the fact that it was expected. A kind and respectful sheriff's deputy came out and took a picture and a couple of statements. I called the local funeral home and a couple of guys who were on call came over with their stretcher and bag and quilt to collect him. About 90 minutes after I got the first call, his body was on its way to the funeral home and thence the earth and eventually the far corners of the universe. We sat and talked as the sun went down.

It was a good death, as much as a death of a vital and gifted person with plans can be good. It was a hospice-free home death, surrounded by family and friends. Such a thing is becoming vanishingly rare, and it made me think. Maybe we could make this easier. Maybe our community could reclaim the wisdom that it takes to facilitate better deaths, with or without hospice, nuanced to our needs and resources.

Hospice care is intended to be a holistic approach to providing support to dying patients during their last 6 months of life. The concept of hospice dates back to medieval times. Wikipedia says that in 1090 there is evidence that places existed which were devoted to care of the incurably ill, staffed by crusaders. There have been institutions for treatment of people who are dying since then, likely because of the clear need for dedicated care for people who are vulnerable and in pain and unable to advocate for themselves. Hospice at home was encouraged by Elizabeth Kubler-Ross (author of the book On Death and Dying), arguing that we shouldn't institutionalize people who are going through a universal life process. Legislation to pay for hospice care passed in the early 1980's in America. Hospice care has increased in popularity, more than doubling the number of patients utilizing the service and the amount of money spent in the last 10 years. This year an industry report predicts that the US will spend over $25 billion on hospice care. (It will also save several times this amount of money by providing appropriate care for the dying rather than futile procedures in a hospital setting.)

Hospice is extremely valuable in our culture which has lost the habit and skills of taking care of the dying at home. They provide a consulting nurse who keeps in touch with both the patient and his or her doctor, providing adjustment of medication to ease suffering and equipment such as hospital beds or shower chairs that may become necessary. They provide 24 hour phone advice and expertise regarding the dying process. They organize volunteers who will spell a caregiver to go out for a walk or shopping and aides who can help with bathing. Besides being valuable, hospice is also extremely expensive (mostly paid for by insurance including Medicare) and often feels like a one-size-fits-all solution. Hospice is difficult for introverts and people who treasure their privacy. "Going on hospice" can be demoralizing. Hospice is mostly not available to people who are still undergoing life-prolonging treatments such as chemotherapy. The use of pain and anxiety medication often seems heavy handed. I have ranted about some of these issues in the past. All this aside, I am truly grateful for the existence of hospice services and devoted hospice workers who make dying at home and in peace easier.

But I think we can do more and maybe better. My friend who died, and his family, needed his wise friends and his multidisciplinary team organized by his specialist, his flexible and understanding primary care physician and, in the end, me to smooth the difficulties of his passing. It turned out that he needed a bare minimum of medication and remained intelligent and interactive up until nearly his final breath. He didn't need hospice, but he did need help. I think there is support that a community can provide that is beyond what a hospice organization does.

What we need is a network of people in our community who are good for different things, to share with each other and with people somewhere on the dying spectrum what they know. Emergency medical technicians know what needs to be done when somebody dies at home of a terminal disease and so do I, but families of dying people should know too. It would be reassuring. Lawyers know about what is needed to have a valid will. Priests, nuns and other clergy people are skilled in helping people find meaning in the process of dying. There are people in my community who always seem to be there when someone is very sick and they are comfortable with some of the worldly aspects of the end of life. There are people who have special relationships with animals who could give comfort by visiting with a cuddly creature. There are musicians of all description and artists who can brighten a dreary space. People who have recently gone through the death of a loved one might be glad to sit down for a cup of coffee or come along for a doctor's appointment to take notes or ask the right questions. They may know how to make the funeral process less expensive. There are social workers who would be founts of good advice. Some people know about helping write a life history. Some people can do guided imagery or hypnosis for symptoms control. There are needs and solutions I haven't thought of, and somebody in my community knows about them.

When I was pregnant with my second child, we hired a doula. She was a woman who had lots of experience with birth and who helped me with questions I didn't want to ask an obstetrician. She encouraged me, shared stories and sat with me the entire time I was in labor, which was a long time. Because of her confidence I didn't feel frightened and I didn't need labor anesthesia. There are also doulas for the end of life. There are none in my community, but I think there are people with the basic wisdom and experience to be a companion for a patient and family during the dying process. Death can be frightening but it doesn't need to be.

This network of people would not displace traditional hospice, at least not in most cases. It would be a volunteer organization and, with the possible exception of doulas, there would be no requirement to be "on-call." This would create new connections within our community. There would be unexpected and probably positive consequences. Each person who volunteered would know that, although they are giving now, they will be receiving at some point because death is going to happen to all of us.

The hospice movement that gained steam in the 1980's was very important. It helped move death out of the hospital and the intensive care unit and back home, where we can be surrounded familiar things that bring us comfort. I think we are ready to take the next step. We may be ready to use our collective wisdom to find the meaning in life's end, beyond the mistaken concept that death is a failure of medical technology. Life is valuable in part because we know we will die. Like birth, we only get to do it once. Maybe we can be intentional about it and help each other out by sharing what we do well.