Search This Blog


Follow by Email

Wednesday, April 22, 2015

Preventive Medicine: on being a "bad patient" (Readers beware: this is the rant of a curmudgeon. Take with at least one grain of salt.)

I am, or will be, a "bad patient." The "good patient" accepts advice gracefully. The "bad patient" may not be a bad person, but does not play the part of the patient well. The word patient comes from the Latin word root pati, to suffer. The "good patient" suffers well, and accepts help from a physician,who Merriam Webster defines as someone skilled in the art of healing. This relationship is one in which the roles are well defined. When the patient is not actually suffering and is even more confusingly "skilled in the art of healing" the roles get really wonky. I will be this kind of "bad patient."

One way in which I do not play the part of the patient well regards preventive medicine. I am getting to an age at which various things are recommended in order to reduce my risk of developing some dread disease. When it comes to these recommendations, I find that I have become quite the picky consumer. I would dearly love not to get a preventable disease, but after more than 2 decades of practicing primary care medicine, I have seen too many undesirable consequences of perfectly benign sounding medical tests.

Breast Cancer Screening:
I don't avail myself of mammograms. I did once, and that was fine. Starting age 50 I was supposed to get mammogams every other year, according to the US Preventive Services Task Force (USPSTF). Maybe I'll get another one sometime if the data gets better. A Canadian study showed no significant effect of regular mammography on breast cancer mortality in average risk patients, though women who get regular screening do get more treatment for breast cancers, including mastectomies and radiation therapy.

Colon Cancer Screening:
I haven't had a colonoscopy. In this test, a fiberoptic scope would be introduced into my lower intestine by way of the rectum and the whole colon would be visualized with the expectation of finding and removing polyps before they become cancers, or seeing cancers before they become incurable. USPSTF said I should have started those at age 50, but the data for women without suggestive family histories of colon cancer is not convincing and the potential for something to go wrong definitely exists. An inadequately sterilized colonoscope could introduce some unfriendly bacterium into my gut. I think I like my flora as it is, thank you. The procedure to clean out my gut, drinking a half gallon of polyethylene glycol solution until my bowels run clear, which is required before the procedure, may be fine, but I'm not entirely sure that a day of rapid intestinal transit is good for me. Intravenous sedation, which is usually given in order to make this procedure tolerable, has a small risk of killing me and will make me goofy, though possibly in a pleasant way. I will watch for updates, but I'm thinking I may have this procedure when I'm 60. Maybe. I prefer to reduce my risk of colon cancer by maintaining a healthy weight and eating a diet rich in fruits and vegetables.

Cervical Cancer Screening:
Pap smears. The recommendations have changed and the schedule is less onerous, but since I had regular yearly pap smears until several years after becoming monogamous, my chance of having a new human papillomavirus infection is vanishingly small, and it is that infection that leads to cervical cancer, which is the only cancer that a pap smear reliably detects. I think I may be done with pap smears.

Blood pressure screening is another story. Detection of hypertension and treatment of high blood pressure saves lives, prevents strokes, heart attacks and kidney failure. I can do it myself, and if my blood pressure is persistently high, I will actually see a doctor and start medications. Let that not happen, because I will not submit gracefully to someone else's opinion on which medication I should take. Unless, of course, they are right. Often I see patients started on some medication which just came out and is available in the doctors free sample cabinet. That one I don't want. It will be expensive to refill and we will know very little about how well it works in the long run. Don't I sound annoying?

Bone density testing. There are machines that will shoot photons at my bones and tell me if I am developing osteoporosis. I should get this done at age 65. Mostly I should avoid breaking bones, though, since that is the real problem. It matters not a bit if my bones are as fragile as dry corn stalks so long as they never break. Staying strong and agile is the best way to avoid falls and fractures. If I find out that my bones are thinning, the main option for bone strenthening are the bisphosphonates, such as alendronate (Fosamax). These are medications which, if they don't get caught in the esophagus and cause a terrible ulcer, which they are known to do, and they don't get entirely eliminated, unabsorbed, due to having taken food with them to avoid getting the esophageal ulcer, will enter my bones to reduce the natural breakdown of bone by my osteoclasts, thus messing up the delicate balance of osteoblasts and osteoclasts that creates normal bone architecture. This will reduce my risk of breaking a hip or vertebra if I fall, but will put me at risk for a rare but horrific breakdown of bone in the jaw called osteonecrosis. So I will work hard on my strength and balance, eat a good diet and encourage the effects of gravity on my bones via weight bearing exercise. Luckily I am not yet 65, so I can decide on this test later. I'm leaning toward not.

But what about taking estrogen for my bones? It is primarily the loss of natural estrogen at menopause that will lead to osteoporosis. Will I take estrogen, then, since I am in menopause? The drawbacks are a slight increase in breast cancer, but without a convincing increase in breast cancer deaths, so this is a wash as far as I'm concerned. There is a slight increased risk of developing blood clots to the legs and lungs, but I didn't get those when I made estrogen with my natural ovaries so I doubt I'll get them with a small dose of exogenous estrogen. There is a slight risk of developing endometrial cancer when taking estrogen if progesterone is not taken as well to maintain a thin endometrium. Birth control pills, which are about 6 times the estrogen dose of a standard estrogen replacement pill, have a progesterone agent in them, and that may well be adequate to maintain a thin and healthy endometrium. I can also check my endometrium regularly with a quick transabdominal bedside ultrasound and make sure everything is looking hunky dory. Will I get a stroke or heart attack with estrogen? The results from the Women's Health Initiative suggested that this might be a risk, but further study has suggested that it may have been the relatively high dose of medroxyprogesterone that caused that problem, and there was no actual survival disadvantage in long term estrogen users. Will estrogen help me avoid hot flashes and vaginal dryness? Yes, it will. Perhaps I shall take one sixth of a birth control pill daily, since that is cheap and generic and will avoid wallet toxicity.

What about vaccinations? Yes, with no hesitation. Yearly flu shots, though I recognize my potential benefit from these is low, pneumonia shots when the time comes, tetanus and acellular pertussis, yes, and appropriate travel vaccinations with the possible exception of yellow fever. (There is a longer discussion of that here.)

How about obsessing about my cholesterol? The present recommendations about cholesterol lowering are to treat patients with a 10 year risk of cardiovascular events of 7.5% or higher. The calculator for this has recently been shown to overestimate this risk, but I have always been in the vanishingly unlikely range, which means that I need not know my numbers. I have checked them occasionally and they are not pristine, but it is not clear to me what intervention would be most likely to lower my already low risk of cardiovascular disease. Certainly there is no indication for medications. I might become primarily vegetarian and eat fish when I can get it, embracing the Mediterranean diet. There is no good data to tell me which fats I should eat, but it seems wise to be moderate and avoid trans-fats which don't naturally occur in the foods I love anyway. 

Moving my body:
How about exercise? Exercise seems to play an important part in preventing all kinds of things I don't want, from diabetes to dementia. It will control my weight, which will help me avoid hypertension and cancer. It will improve my balance so I will avoid falling and breaking bones. I will be more likely to be nimble enough to jump out of the way of an oncoming bus or bicycle. Yes to exercise. Long walks in the woods, cross country skiing, visits to the gym, bicycling, swimming, canoeing. 

The yearly physical:
How about a regular physical exam? Not sure. So far it's been no for me, but yes for my patients. A physical exam is no longer really recommended, though there are many pieces of the physical exam that are part of what we recommend to patients as prevention. I think a physical exam is actually a good idea, but more as a prolonged discussion of preventive testing recommendations and to develop shared goals. Examining the body is not a bad idea, either. As we age, our bodies do weird things. A toe will point in the wrong direction, there will be a lump or a pain or a vague dysfunction, none of them severe enough to warrant a visit to the doctor, but each one deserving attention and maybe explanation. In total, these little irritations may paint a picture of a whole organism which needs some kind of intervention in order to be as healthy and vital as possible. If this kind of an evaluation and discussion is a physical, then yes, definitely, and I might even want one. 

So am I actually a bad patient? Since I am not a patient, it is still a moot point. They say doctors make terrible patients. We will just have to see, when the time comes.

Tuesday, April 7, 2015

Crazy idea: take blood pressure like the pros, and teach patients to meditate.

I recently read a discussion by 3 hypertension specialists, Drs. Jan Basile, Dominic Sica and David Kountz, on how to treat "resistant hypertension." Resistant hypertension is blood pressure that remains above goal despite treatment with 3 drugs, from different classes, one of which must be a diuretic. 10-15% of patients with high blood pressure will have resistant hypertension. These are the people who always seem to have blood pressure at levels that are concerning despite using medications that should be working. We wonder if they are actually taking the medications, but they assure us they are. It's almost like they are just taking sugar pills.

Often patients such as these have extensive testing to see why their blood pressures are so high. They get put on even more medications which then have side effects, and eventually we may just give up and decide that they are as good as they are going to get. Giving up helps to avoid still more medication side effects, but patients with resistant hypertension continue to have significantly increased risk of strokes, heart attacks and kidney failure, which presumably could be reduced by controlling their blood pressure.

So what do the experts do first? They take the blood pressure right. Their scrupulous method of checking the blood pressure is to have the patient abstain from caffeine or excitement for 30 minutes prior to having the blood pressure measured. They then sit in the exam room quietly for 5 minutes and the blood pressure is taken automatically 3 times, at 1 minute intervals, and the results are averaged. Adequately measuring blood pressure in the clinic setting requires that the patient be sitting, back supported, feet on the ground, not talking.

This is almost NEVER the way we do it. Five minutes sitting quietly? When does that ever happen? This would mean just sitting, not messing around with a phone watching cute animal videos, not reading about which movie stars are splitting up, not yelling at one's kids who are wandering around the examining room trying to stick forks in the electric sockets.

As far as I can picture this, the only way to actually get a person to sit quietly for 5 minutes, unless they already know how to meditate, is to teach them to meditate. The easiest instruction is to count each breath up to 10 and repeat. When thoughts happen, which they inevitably do, the patient is instructed to notice them and go on with counting. Mindfulness based stress reduction, which was just demonstrated in an article in this week's JAMA to be effective in treating insomnia in the elderly, also includes muscle relaxation and instruction on acceptance of emotions and sensations. But breath counting is a very basic meditation technique and can be taught in about 30 seconds. The nurse could do it, then go away for 5 minutes, come back and take the blood pressure. In silence. And then the patient has meditated, possibly for the first time ever.

So then you have taken the blood pressure correctly, and it is probably lower than it would have been with our standard techniques. This will likely reduce the number and dose level of medications patients have to take, and they have learned to meditate. They can do it again. It will help them sleep. Perhaps they will learn to like it, do it regularly, and it will reduce their levels of inflammatory cytokines. Then they will have fewer heart attacks.

I can hear the grumpy voices already saying that patients will never do this. I kind of think they will, though, if we advertise it properly. It is the ONLY way to get an accurate blood pressure, which will undoubtedly be lower than if we take the blood pressure the standard way. It will require a little bit of work flow rearrangement, but it is a great idea. I think I will try it first with patients who have resistant hypertension or those who I am thinking about putting on blood pressure medications for the first time. These are the situations in which both the patient and staff will be most motivated to try something new. I will also not necessarily tell them that they are meditating.

Wednesday, April 1, 2015

American Board of Internal Medicine Maintenance of Certification firestorm: what more to say?

About 2 years ago I finished the process of recertifying for the American Board of Internal Medicine. I had last done this in 1990 and had a time unlimited certification, but had heard that recertification, which included doing a certain amount of studying and then taking a long test, was a good idea. Specifically, one internal medicine physician had written an article about the process, which sounded a little like a medieval quest, complete with hardship and mortification. That sounded perversely attractive.

The process was expensive, about $1500 (now $1940) to sign up for the whole deal, which involved keeping track of the educational modules on the ABIM site, access to some educational material and completion of a Practice Improvement Module which was more disruptive than the rest of the process. I had several options, but chose to evaluate how well I was doing on preventive medicine, things like getting my patients to do mammograms and colonoscopies and screening blood tests and that sort of thing. There were before and after questionnaires for my patients to fill out which were tallied and available for me to see on the website. These told me how I was doing before and after instituting certain changes. I've always disliked being evaluated with a numerical scale in a disconnected manner, but it wasn't too awful and I did learn quite a bit about the current recommendations for preventive practice and the evidence behind them. I then took the long test, which was another fee, about half of the original fee, and waited maybe a month before being notified that I passed. In order to feel confident in my ability to pass the test, I attended a several day long preparatory set of lectures at a major medical school, which cost a few thousand dollars and took a couple of weeks off from work to prepare. I didn't resent it, because it felt like the process had fully updated my operating systems, but the cost ended up being somewhere between $10,000 and $20,000.

About a year later I learned that, in order to maintain my certification, the ABIM was asking that I complete ongoing approved Maintenance of Certification (MOC) activities, including the practice assessment modules which would be due every 2 years. This was a change, since the prior requirements were assessed every 10 years, culminating in the exam. I thought that I would go ahead and do this, since I had learned a good deal the previous go round. In my present practice as an itinerant hospitalist and sometime rural primary care physician, the practice assessment piece is really tricky, so I haven't gotten around to that yet. The requirement to do this is presently on hold by the ABIM.

Since the change in requirements for MOC, internists have been rebelling. Many of them have practice responsibilities that are more demanding than mine, so they really don't have time to do all of this. The scope of practice for internists is very diverse and many find that what they learn in the process is not that useful. The price is painfully high. Newsweek picked up the smell of blood in the water and wrote a nice inflammatory article that simplified the issues and opened them up to general scrutiny. The ABIM responded testily. Fur is flying everywhere. Much has been said by knowledgeable people on the many sides of the argument, and I will not attempt to cover their points. I have a few thoughts, though, that don't stand out in what I've read and have some bearing.

1. There is at least one other way to get certification as an internist. The American Board of Physician Specialties offers certification in Internal Medicine and various other specialties. It was initially started as a certifying agency for Osteopathic Physicians, but now includes MD's. The cost of certification is about the same as for the American Board of Medical Specialties, the parent organization for ABIM, and their recertification occurs at 8 year intervals. They do not require ongoing maintenance of certification activities, other than demonstrating involvement in continuing medical education for 50 hours a year. This might be a viable way to opt out of ABIM's requirements.

2. The concept of "Maintenance of Certification" didn't come from ABIM, but was adopted by the parent organization, the American Board of Medical Specialties in the year 2000. This board includes doctors of pretty much all varieties, including surgeons, anesthesiologists, radiologists and everyone I can think of. There are 24 member boards. I checked the boards of Family Medicine, Pediatrics and Emergency Medicine and all of them have MOC requirements that are ongoing in order to continue to have a board certification. There are at least a few of these doctors who write about their specific requirements, and it looks like they also find them onerous and of dubious value. The physicians who find the process to be just fine probably don't write about it. Most of those who are unhappy about the process are likely too busy to write about it and probably just growl quietly to anybody who asks.

3. It is very hard after finishing medical school and residency to keep up with the huge body of internal medicine, with its very active ongoing research on the pathogenesis of diseases and what therapies work and don't work. Having a process such as board certification and recertification that can provide a framework for relearning that body of knowledge as it changes is very important. Just achieving 50 hours of continuing medical education in the fields that most interest us is not enough to maintain competency. The process of learning what I needed to know to pass the ABIM test was valuable and I am a better physician for having done it.

4. Doctors don't want to be attached at the hip to their certifying boards. That goes for pediatricians, family practitioners, emergency physicians (and so on times 24) as well as internists. We already have to prove competency for maintenance of privileges at hospitals, state licensing agencies and even with insurance companies. Something about this recent MOC change was the last straw.

Tuesday, March 17, 2015

Practical Emergency Airway Management--human factors in response to medical emergencies

Physicians need to complete about 50 hours of some kind of continuing medical education (CME) every year. The ideal kind of class is one that we actually attend in person, with teachers who are expert in the field being taught and are somewhere near the cutting edge. CME classes are especially nice when they include something hands-on rather than just a lecture format because much of medicine is hands on and because that wakes us up and keeps us focused. There are other ways to get education, such as studying written materials or attending classes taught via video presentation, and they are an important way for physicians who don't have the leisure to leave their work to rerfresh or expand their knowledge base. I've always gotten more from the courses that were taught by actual living breathing people, though I have availed myself of lots of the distance options

One thing that physicians are often required to do, and rightly, is to remain familiar with how to deal with emergency situations, ones which thankfully don't happen very often. The hardest things to remain competent to do are the procedures that we perform only in extreme situations and can't be practiced on healthy or nearly healthy people because the procedures carry too much risk. The most perfect example of such a procedure is providing an emergency airway to a patient who is at risk of being unable to safely breathe for him or herself. In such a situation, for instance if a patient comes in who is so ill and weak that they are unable to support their need for oxygen and/or for elimination of carbon dioxide, breathing must be augmented in some way. Sometimes a pressurized mask, "bilevel positive airway pressure" or "bipap" may work, but sometimes even that in not enough and the person must be connected to a ventilator. The ventilator provides the "good air in, bad air out" that normal breathing normally does, but a tube must be placed into the trachea via the nose or mouth to connect the ventilator to the human. This is a tricky and sometimes difficult procedure. A tube stuffed blindly into the mouth will normally go down the esophagus into the stomach, which does not actually connect to the lungs in health people. In order for a person to allow a tube to go down the throat (or nose in rare cases), he or she must be heavily sedated and, ideally, entirely paralyzed in order to see the clear path for tube placement. When a person is not breathing adequately, there is still some oxygen exchange going on, but when that same person is heavily sedated and paralyzed, no breathing will happen. Artifical respiration can be performed via a mask and a bag, but that is difficult to maintain and often fills the stomach with air as well, so the endotracheal tube (tube to the lungs) needs to be placed quickly and accurately. If it accidentally goes in the esophagus and the situation is not quickly discovered, the patient will die. Most of us physicians don't often run into a situation where endotracheal tube placement is a common occurrence so, despite the fact that we need to be very adept at it, it's hard to maintain competence. Even those of us who do it pretty often were sometimes taught in a haphazard manner which we try to overcome by practice. When an endotracheal tube does not go in easily, as planned, we have the option to place a temporary puffy internal mask which fits over the trachea through the mouth, or to perform a surgical procedure to put a tube through the cricothyroid membrane in the neck. That is likewise a procedure that demands competence and one which is not possible to practice on real people who value their lives.

I just returned from a nearly perfect course in providing airways in emergency situations, taught by Dr. Richard Levitan, a self proclaimed airway geek. He taught the course in conjunction with two other airway experts, Dr. George Kovacs from Dalhousie University Medical School in Halifax, Canada and Dr. Ken Butler, and emergency physician and airway pharmacology specialist from University of Maryland. I say nearly perfect without any real concept as to what would have made it more perfect. The course started with a day of lectures, heavily sprinkled with video recordings of real situations, anecdotes and student participation. The students were primarily emergency physicians, with a smattering of medical residents and critical care and hospitalilst type of doctors. There were not very many of us, maybe 18 total which gave us all great access to the teachers. Lunch was at a Greek restaurant a few blocks from the hotel venue, and we all ate together at a large table. We were encouraged to tell an airway story (which are some of the most colorful stories in most peoples' memories) after we finished eating, which meant that we knew each other as individuals by the end of lunch the first day. That is very unusual in medical conferences where it is pretty easy to depart with no new friends. Dr. Levitan has a huge amount of practical and academic knowledge of everything to do with the airway, which despite being small geographically is huge in spectrum. He digested that to give us an uncluttered approach to placing the most appropriate kind of airway device, recognizing that the psychology of stress in times of great urgency of action limits our ability to be able to use complex, multi-branched tree charts. His co-teachers provided alternate approaches when something was controversial, which I found very helpful and reassuring. He focused on "human factors" in the procedures, a term which I have heard floating around more and more lately, often in regards to computerized documentation. "Human factor" and ergonomics are words used to describe efforts to make processes, cognitive, emotional and physical, fit real humans in such a way that they are efficient and also happier and less likely to be injured. Dr. Levitan was particularly interested in making the ways we think about performing in emergencies add to our success and reduce our tendency to fear and subsequent stupid decisions. He also taught details about holding instruments, positioning patients and breaking down complex procedures into easily accomplished bits. His presentation style was engaging and he combined media with printed data, stories and questions in a way that excellent professors do.

The second day was spent in the lab. There were about 20 relatively recently deceased people whose unselfish decision to donate their bodies made it possible for all of the students to become competent and confident by the end of the day. We gowned and gloved and viewed the epiglottises, larynges and tracheas of each of them, allowing us to become familiar with a tremendous amount of diversity of anatomy. We placed endotracheal tubes in 20 subjects, practiced use of standard, fiberoptic and video laryngoscopes, bronchoscopes and other optical gadgets. We learned exactly what twist of the wrist allows atraumatic passage of a tube. We placed tubes through cricothyroid membranes, thus de-stressing one of the most worrisome procedures in our potential practice. The bodies were softer than the embalmed bodies that I learned anatomy with in medical school, and were much like the patients we might see in this type of situation in texture. I thought it might be a little bit horrible, but it was not. I was kind of attached to our patients by the end of the class, and would have liked to have known their stories. 

Beside my profound thanks to the cadaver subjects, I am so very grateful to excellent teachers who spend years learning things of immense complexity and then present them to us, with a generous helping of humor and compassion.

Saturday, February 21, 2015

Chronic obstructive pulmonary disease (COPD) exacerbations and respiratory syncitial virus--maybe a huge problem?

We're having a curtailed winter and early spring here in the inland northwest, or so it seems. We could still get a snowstorm or two, but the crocuses are blooming and the redwing blackbirds are singing by the unfrozen ponds. Despite the mild temperatures and sunny skies we are still having an influenza epidemic and many of our patients with chronic lung disease are becoming sick with wheezing and low oxygen levels. We have rapid tests for influenza and for another lung infection, respiratory syncitial virus (RSV) and I am presently seeing less flu and more RSV.

I have never routinely checked my patients with asthma and COPD exacerbations for respiratory syncitial virus. I thought that it was one of  those tests that would take so long to come back from the lab that the patient would be well before I ever found out the result. It is possible, though, to get a result back from a rapid antigen detection test (much like a home pregnancy test) using a sample of mucus from the back of the nose, in 30 minutes.

Last week two patients with severe wheezing and uncontrollable cough who were in the hospital with worsening of their COPD tested positive for RSV. Yesterday another one did. It is RSV season. In fact, it is even more RSV season than it is flu season. We are smack dab in the middle of RSV season which stretches from January to April. RSV is best known as the virus that causes acute lung disease in infants and children. In the US alone, over 80,000 children are hospitalized each year due to this virus and worldwide it kills more children under the age of 1 than any other infectious agent with the exception of malaria. More high risk adults, such as those with lung disease or immune suppressing diseases, contract RSV than they do the flu.

RSV is, for most of us, just a cold. It causes a stuffy runny nose and a cough, sometimes a fever. In small children or people with lung disease it can cause respiratory failure. It is very contagious. It is most often contracted by directly touching an infected person or objects with infectious secretions, even when they are dry. It is very important to avoid transmitting it in the hospital, and since we don't routinely test adults for it, we are probably very efficiently spreading it from infected to uninfected patients. The time from exposure to symptoms is 2-5 days. There is no vaccine, and people who get RSV can get it again, even during the same season, though perhaps more mildly. In very susceptible babies, a monoclonal antibody, Palivizumab, can be given monthly to prevent disease, but it is terribly expensive. For a baby it might run $1000 to $3000 per dose, but since it is dosed by weight, it would probably cost around $30,000 per dose for the average size adult. Not an option.

Prevention involves good hygiene, avoiding exposure to infected people, handwashing, and avoiding cigarette smoke which can make a person more susceptible. There is an antiviral medication, ribavirin, which is  active against RSV and sometimes used, primarily for immune suppressed patients like those with bone marrow transplants. Ribavirin costs about $30 a pill, would be dosed twice daily, has a black box warning for causing hemolytic anemia. It is not known if its use improves symptoms.

I think that it is likely that many of the winter adult lung disease admissions that I see are related to RSV. It is much more common than I believed. Since there are no really useful pharmaceuticals to treat it, none of the economic forces that lead to mass education are at work to raise awareness of its importance in the aging and chronically ill population that we internists see in the office or hospital. There is talk of vaccine development, but if natural infection does not give long term protection, it is unlikely that a vaccine will. It would certainly be nice if we knew whether ribavirin helped improve symptoms. Old fashioned and low tech prevention is probably the key to reducing its impact. I certainly need to be checking for it more often and thinking about taking precautions to avoid spreading it in the hospital or waiting room!

Tuesday, February 17, 2015

Nursing homes: what are we paying for and what are the alternatives?

The US population is getting older. There are about 9 million Americans who are over the age of 80 and about half of them need some kind of help in the activities of daily life. About 1.3 million Americans live in nursing homes. The average yearly cost to live in a nursing home is over $80,000, but that varies hugely by location. In San Francisco, the average cost of a year's stay is $144,000. In my state, which is notoriously cheap, if you live in a small town away from the big universities and population centers, it would cost closer to $68,000. This is quite the deal, but still more than double the average yearly salary for a working person. The total costs associated with nursing homes and assisted living in the US was $255.8 billion in 2013, according to the Medicare data.

Expensive, and...
What do you get for all that money? It varies, but generally nursing homes are older buildings and rooms are shared and often cramped. There is a hospital bed for each patient, sometimes a mattress on the floor if the patient is at risk of falling out of bed due to being demented and wakeful at night. That sounds a little barbaric, but it is actually a great idea when compared to bed rails or pads on the ground next to the bed, which can just make things worse. There is usually a shared private bathroom, with toilet and sink, sometimes a shower. There are 3 meals a day and snacks, like ice cream or pudding. There is a registered nurse available around the clock, but he or she may be responsible for 50 patients or more. There are licensed practical nurses available as well, and the ratio is a bit better for them, maybe 1 per 5 patients. There are nurses aids, less well trained, who help with dressing and toileting and cleaning up messes, and are spread pretty thinly. For-profit nursing homes, which make up the majority, have worse staffing ratios than state or non-profit facilities, and better staffing ratios correlate with better care and outcomes. There is often physical therapy available in a nursing home to help patients walk better or have less pain or regain function after an injury. Some nursing homes have speech therapy specialists who help improve swallowing and help patient learn to communicate after strokes. There are often activity directors who devise ways to make the time pass more pleasantly with games or crafts or music or movies.

People often end up in nursing homes when their health takes a sudden downturn, such as after an illness or injury that leads to hospitalization. After an acute illness older people are often profoundly weak and have lost the self confidence to return to their homes. Injuries such as fractures of the leg or hip may require that a person not bear weight, leaving them stuck in a wheelchair, needing help to get to meals or the bathroom. Many of these problems are temporary, but sometimes they are part of a cascade of events leading to no longer being able to function independently. When patients no longer require hospitalization, they may be transferred to a nursing home or "skilled nursing facility" (SNF or "sniff," for short.)

You can't always get what you want...
My patients tell me that nursing homes are, in general, terrible. Some patients are grateful and satisfied but most really dislike living in nursing homes. A large proportion of residents can't express themselves well enough to have an opinion that can be heard. What the ones who talk about it say is:

1. The food is bad. Usually it is mass produced and bland. In any case, people like their own special ways of making food, and this can't happen in an institutional kitchen.

2. It takes a really long time for a nurse or aid to come when a resident needs them. If this is to use the potty, often they are wet or soiled by the time help arrives, then they feel sorry and embarrassed. I think there is such shame attached to this that I only hear about a tiny fraction of it. If the problem is pain, the resident is often in such a state when the relief arrives that medicines don't work as well and they become irritable, alienating staff.

3. Mistakes are made. One of my patients, who was labeled a trouble maker, told me that 30% of the time he received his medications, there was some kind of error. Not necessarily large, but stuff like forgetting the aspirin, or giving him a whole rather than a half pill of something. The vast majority of mistakes like this would go completely unrecognized, not even showing up as a cause of morbidity, since most nursing home residents don't check to make sure their medications are correct.

4. Other residents are loud or rude or are just so sick that being near them is demoralizing. It would be nice if we could all be compassionate to our less fortunate or less polite peers, but many people need refuge, especially when they are old and vulnerable.

Like being in a sub-optimal summer camp as a child, people usually do adjust to living in a nursing home, but a large proportion of them, when they have returned home, tell me that they do not want to go back.

How about DIY?
It seems crazy that it should cost so much to live like this, when many nursing home residents were able to survive on a tiny social security check before they were admitted. What if they just arranged for the important part of this care without going to an actual nursing home? It sounds like a great idea, but the math doesn't work out that well. The average nursing home cost of $80,000 a year is what we have to beat. If we just start with the 24 hour care, it costs over $80,000 to pay someone $9.50 an hour for 24 hours a day, 365 days a year, and that isn't even a living wage. Compared to this cost, stuff like rent and food barely need mentioning, but $1000 a month for rent and utilities plus $400 a month for penny pinching groceries adds about another $17,000. Sharing the expense with a spouse starts to be comparable to the cost of a nursing home, but reliable home help that will not call in sick or smoke or mismanage money is extremely hard to come by. 

People have, for years, come up with creative ways of dealing with the process of aging. Before going further, I should mention the fact that humans have devised state and federal programs, Medicaid and Medicare, to help pay nursing home costs, since few seniors have enough money to pay their own nursing home costs. Medicare pays a large proportion of nursing home costs for patients who are expected to return home, but need a relatively brief nursing home stay after a hospitalization in order to do so. Medicaid will pick up the bill for nursing home costs when a senior can prove that they no longer have the resources to pay their own way. But there are also non-nursing home options that many people make work.

Living with family
As long as humans have existed, old people were taken care of by their extended families. This is shockingly inexpensive, since the very old don't eat much and already have all the clothes they need and rarely have expensive hobbies. Unfortunately not everyone has an extended family, and American lifestyles are not focused on having someone with time on their hands hanging out at home all the time. Even when family is available, things can go very wrong. About a year ago I saw a pair of sisters, one 96 and the other 102, who lived with their son in an apartment. They were hungry, thin and dirty and, according to the emergency medical crew, slept on a mattress together without sheets and just a grubby blanket. Their son wasn't cruel or abusive, just not much of a homemaker. There was shock and outrage among our hospital staff, but the sisters eventually went home with him because that was what they wanted.

On the very much more jolly end of the spectrum, one of my patients took her mother out of a perfectly fine nursing home to where she had prepared a room at her monastery. Her mother became more active and always had a novice assigned to her, who learned compassion by practicing it. She ate healthy food and complained about it, but she had complained worse about the nursing home. She got healthier and needed less medication. She eventually succumbed to old age, with hospice attending her at the monastery. 

Adult Family Homes
Since staffing is the biggest cost associated with care of the very old or disabled, adult family homes have arisen so that the cost can be shared among several clients. These are large private homes that have 24 hour staff, some of whom live there, and care for several older adults. Some of these are great. Near my home, there is a family home care place run by a family from Kenya, and I've been told that they are wonderful. One of the great benefits of a place like this is that staff turnover can be quite low. If staff live in the home or are close friends of the owners, they really get to know the residents and they get good at what they do. Also there are a smaller number of clients to take care of than in nursing homes, which means that care is more personal. Some of these places have come into the spotlight for providing terrible care, which is made more possible by there being less regulatory oversight.

Foster care
Adult foster care homes usually have one or very few clients, and caregivers need to have the basic knowledge necessary to care for their clients, but don't need to be nurses. If the chemistry is right, these can be great. I don't know of a clearinghouse for foster care providers, and in my experience these arrangements tend to happen when somebody knows somebody who is willing and able to do it.

Just a little bit of help at home
For people who don't need 24 hour care, staying at home and having help come in is much more affordable. Medicaid will even pay for this, in some cases. Some people remodel to make room for a roommate  and can trade rent for care duties. The patients of mine who have done this often have a long lasting solution that also can solve the problem of being isolated. They do, though, need to have contingency plans for vacations and illnesses and such. 

Out-sourcing--care tourism
What about out-sourcing? There are cultures that do personal care better than we do in the US, and at a much lower cost. Thailand, for instance. The last time I was in Thailand, there were professional massage places everywhere, and they cost maybe 5 or 10 dollars. Service in hotels was amazing and the staff actually seemed to enjoy doing their jobs well. The food was delicious. As it turns out, there are at least 2 nursing homes in Chiang Mai which are geared toward clients from Europe and the US. The very old in Thailand, and there are increasing numbers of them, are almost always cared for by their families, though there are a some facilities that cater to Thai seniors.  One of the ex-pat focused nursing homes is called The Care Resort and is pretty high end, with multiple levels of care and big beautiful grounds and outings to see elephants, or so it appears on the website. I can't find anything about cost on the website, but an article about it in the UK Daily Mail says that a year's cost is about 21,000 British pounds, which is about $35,000. Another such nursing home, which appeared on the website actually to have some Thai clients, is at the McKean Rehabilitation Hospital, which was a home and hospital for lepers when I spent time there in the 1980's, after finishing my residency. It was a beautiful place then, a bit outside of the city, with shade trees and open wards and a wonderfully creative approach to all aspects of leprosy as a chronic disease, but not a death sentence. The staff was cheerful and caring and there was an affiliation with the Presbyterian Church. The website makes it look fine, but not opulent. No prices are mentioned. The extended grounds still house some aging patients with leprosy (a disease which, despite its reputation, is not very contagious) who have no other home, and there is a strong outreach program to serve and rehabilitate people with all sorts of disabilities. 

Going to Thailand in one's great old age would have various benefits, not least of them elephants and tropical fruit. It is never cold, which would be good for those waning years when it is hard to get warm. There is a cultural kindness. On the not so bright side, though, family and friends would hardly ever visit. Medicare and Medicaid would not pick up the bill. Emergency hospital services would not compare favorably to the US. The recent movie, the Best Exotic Marigold Hotel, tells the story of some aging British people who move to India to live at a place that is trying to figure out how to provide assisted living for seniors, and portrays some of the drawbacks and benefits of outsourcing elder care. Moving to Asia is probably impractical for most aging Americans. Relocating would take a very committed friend or family member and a physically pretty intact potential nursing home resident and a hefty dose of courage and flexibility. 

Retirement Communities
Some people are wealthy enough and forward thinking enough to become part of continuing care retirement communities. For a chunk of money, which can range from $100,000 to over a million dollars, it is possible to have an independent house or duplex with the option to move into assisted living or a nursing home on the same grounds as the need arises. High end places of this type probably offer better staffing ratios and probably lower staff turnover than standard nursing homes, and it is certainly easier on couples who can live in close proximity even when one of the pair needs more help than the other.

Co-housing solutions
Cooperatives and co-housing offer another alternative to the corporate approach to aging care. This requires immense planning by community members, but is a way to deliberately and intentionally create an extended family with whom we can age.  

Having the conversation
So what should we do about the fact that we will all, with any luck, grow old? In the year 2050 it is estimated that 1 in 10 people will be over the age of 80. Perhaps half of them will require care of various levels of intensity. I will be 89 years old, if I'm not dead. The majority of people reading this will be 80 or older, or, possibly, dead. I venture to say that none of us wants to be in a nursing home. Are we really doing the hard work of remaining healthy and alive only for the opportunity to spend a small fortune living in a small fusty room with a roommate who may or may not be a suitable companion, waiting for a nurse's aid to come help us? Some solutions may involve technology, unloading overworked personal care givers by having robotic solutions to bedpans and med passing. Perhaps technology will unload everyone's job, and personal care will be one of the only jobs that still requires the work of a human. 

I think that it is mostly important for a conversation to begin, involving not just seniors who are vulnerable if they complain, but all of us who dread dependence and institutionalization. Those of us not yet old need to recognize that it is very unlikely that we will die before this issue becomes relevant. It is very inconvenient to say that the nursing homes we have now are an unacceptable solution to the problem of growing old. If we say that, we have to actually do something, because 1.3 million people need what nursing homes supply, and most of us are unwilling or unable to provide those services ourselves. 

Staying strong and useful
Besides actually planning for our years of dependency, perhaps we not-quite-yet-old also need to think about policies that make us less dependent. Most people dream of retirement, but the reality of not being useful or needed does not usually make us happy. I came upon a link to Thailand's initiatives on the elderly while looking at the nursing home situation there. In 2003 they passed The Elderly Act which, in addition to guaranteeing healthcare and basic food and shelter needs to older citizens, also grants them vocational training and support to become involved in community networks. I don't think we are doing that in the US. It might be a really good idea.

Monday, February 2, 2015

Vaccinations, measles outbreak and reasonable and civil discourse

Lately there has been an outbreak of measles, a vaccine preventable disease, along with an outbreak of people yelling at each other. There have been angry exchanges between people who would like all children vaccinated according to the recommended guidelines and people who support the rights of parents to choose which vaccines to give their children, if any, and when to give them. There has been much focus on the assertion, particularly, that the Measles/Mumps/Rubella vaccination (MMR) might cause autism. There is no believable evidence to support that assertion, but the questions of whether vaccination is safe and whether it should be required are much more interesting.

Yay Vaccines!
I am a big fan of vaccination as a means of fighting disease. It is an ingenious concept. The recipient of a vaccination gets an injection or oral dose of a weakened virus or bacterium or an inactive part of one, which causes the body's own immune system to produce cells that will recognize and kill the real virus or bacterium if it enters the body at some future date. Vaccinations are so much more elegant than antibiotics, which are chemicals that are broadly active against a whole bunch of different agents and only last until the body inactivates or excretes them. Vaccines stimulate the body's own very complex and amazingly effective systems for fighting infection in much the same way that natural infections or exposures would. These systems are then available to prevent disease whenever the need arises.

Herd immunity--that's how vaccines eradicate diseases
Vaccines are ingenious at the individual level, but they are even more ingenious on the level of populations. A vaccine raises an individual's resistance to a disease, but each individual is still somewhat vulnerable to that disease because the body's defenses are not absolute. Some vaccines are more effective than others, and some people have a more robust response than others. Infectious diseases persist in our communities because they move from one person to another. If the vast majority of people in the community are immune to a disease, as can be achieved with vaccination, the disease cannot be transmitted and will die out. The few people in the population who are not immune are protected by the many who are since the likelihood of coming into contact with someone with an active infection in such a community is very low. This effect is known as "herd immunity" and is one of the primary reasons that we should care about whether other people get vaccinated.

Curing smallpox
The word "vaccination" comes from the word root for cow, since the first vaccine in common use was derived from cows to fight smallpox. It had been observed that dairy maids who were infected with cowpox, a pustular disease, from touching the udders of infected cows did not get smallpox. In 1796 the physician Edward Jenner created a vaccine from that virus which became widely used. In 1979 smallpox, which killed as many as 500 million people in the 20th century alone, was declared eradicated. The vaccine was mandatory for school children, and I'm pretty sure I got it when I was a kid. It usually left a little scar on the upper arm but otherwise only rarely had side effects. Once in awhile, when a child had something that predisposed him or her to more serious infections, the vaccination would cause an overall body pustular rash which was very nasty. The vaccine is no longer in common use, but still exists, especially for preventing the tropical disease monkeypox which is similar to smallpox but milder.

Goodbye, polio
Other vaccine successes include polio, which was a virus that primarily infected children via the fecal-oral route, and caused paralysis, which was often fatal or disabling for life. The first vaccine was produced by Dr. Jonas Salk and was an injectable dead virus, and the second, close on its heels, was an oral vaccine that was a live attenuated virus (meaning it resembled the active virus but didn't cause polio.) Polio has been wiped out in most developed countries now due to vaccination, though it still breaks out in countries where vaccination is less common.

Measles, mumps and rubella
The measles vaccine was first licensed in 1962 and improved in 1968. It was combined with vaccines against mumps and rubella to create the MMR in 1971. It is estimated that the vaccine, in its first 20 years, prevented 52 million cases of measles, 17,400 cases of mental retardation due to measles effects on the brain and 5200 deaths. Measles causes fever, runny eyes and nose, a cough, a typical spotty rash and sometimes sore throat and spots in the mouth. I saw a case in Africa in a very miserable infant who probably had measles related pneumonia and had a reasonable chance of dying of the disease. Globally, measles vaccination has had a staggering impact. In the year 2000 it is estimated that over 700,000 people died of measles, primarily children, making it the 5th leading cause of death in kids. With a UNICEF backed measles immunization strategy, measles infections and deaths were reduced by 74% by the year 2010. Africa and India are major measles hot spots. There is no specific treatment for measles, so the only thing physicians can do is support the patient with fluids or oxygen if necessary and try to make sure the disease doesn't spread to others who might be vulnerable. Measles is very contagious. The vaccine, however, is very effective in preventing the disease. Rubella is another spots and fever disease, and can cause serious birth defects if a pregnant mother is infected with it. I had that one when I was a wee child and it didn't seem too bad, but I hope I didn't infect any pregnant people. There was no commonly available vaccine at that time. Mumps is a virus that causes swelling of the lymph nodes and can infect a young man's testicles, sometimes resulting in infertility. The vaccine is quite effective in preventing it, but not nearly as good for mumps as it is for measles.

Autism connection? Nope.
MMR is the vaccine at the center of the present controversy. In 1998 Andrew Wakefield, a gastroenterologist in England, reported 8 cases of children who developed autistic symptoms and gastrointestinal symptoms within 1 month of receiving the MMR vaccine. He proposed that the vaccine was causative, despite the fact that there was no obvious reason why it should be and there was no increase in cases of autism in the period after the MMR vaccine was introduced in England. His data was later questioned and thought to be fraudulent and the paper was retracted. Many studies have been done since then and have not shown any believable evidence that MMR causes autism, yet there are many people who still believe the vaccine/autism connection. Autism does present in early life and vaccines are given in early life, so a reasonable parent with a child who develops autism might suspect that the vaccine caused the autism, even though it did not.

But wait...not necessarily all good
Although it seems pretty clear that MMR doesn't cause autism, vaccines are not all benign and there are many diverse vaccines in common use. In the first 18 months of life the Centers for Disease Control recommends that a child receive about 24 immunizations, if I am reading this chart correctly. If successful, the vaccinations might prevent pneumonia, hepatitis, meningitis, chickenpox and the shingles that can follow in later years, tetanus, which can be fatal, whooping cough, most ear infections and rotavirus gastroenteritis. Also, of course, measles, mumps and rubella. But this is a lot of shots. Each one might cause muscle aches, listlessness and injection site redness and swelling. Children also often cry really hard and want never to go back to the doctor's office. The shot that prevents whooping cough can occasionally cause high fever and seizures and sometimes, though rarely, results in a temporary floppy unresponsive state that can't be a good thing. The reformulated version of this, which has been available for decades now, is less likely to cause these side effects, but the reactions still occur. The rubella part of the MMR can cause chronic arthritis in adults who are rubella immune if they receive MMR to boost their measles immunity.

Other vaccine greats
There are also immunizations for older children and adults which are just as miraculous and just as much of a concern with regard to side effects. These are recommended for various subgroups and situations, but not required for school aged children.  This is a list of all of the vaccines available in the US. One of my favorites on this list is the chickenpox vaccination. I must have been an odd and solitary child because I never got chickenpox. My twin got it when she was in her 20s and was really sick. She still has scars from it. Chickenpox is usually an annoying skin rash, with lots of small blisters that scab after a few days, but those little blisters can occur in the mouth and esophagus which makes eating and swallowing very difficult, and the virus can cause severe pneumonia. When I was in my thirties they released the chickenpox vaccine and I got one. Since that time I have been exposed to chickenpox, which is incredibly contagious, many times without getting the disease. This means that I, and the generation of children that have gotten that vaccine will never get shingles, which is a reactivation of chickenpox which causes pain and skin lesions, sometimes with lifelong pain and scarring. Despite the fact that the flu shot is sometimes disappointingly ineffective, I happily submit to it yearly because the flu is such a nasty disease and vaccination lowers my risk of getting it or makes it less severe if I do. The human papillomavirus (HPV) vaccination is also a winner. It is indicated in girls and boys to prevent genital warts that can cause cervical and penile cancer. It is still expensive and hasn't been embraced universally yet, partly because genital warts can also be prevented by having only one sexual partner for life and making sure that he or she has never had sexual contact with anyone else. Some parents forego the vaccine for their children because they believe that this will be achievable.  Cervical cancer kills 4000 women yearly and results in fertility threatening surgery and treatments in many more. The HPV vaccine could prevent these outcomes and potentially also make the dreaded pap smear obsolete.

Yellow fever: not without its problems
The yellow fever vaccine is both wonderful and terrible. In the 1600's yellow fever came from Africa to the Americas and eventually to Europe with captured African slaves. Yellow fever is so named because it causes liver failure with jaundice. It also causes nausea, vomiting, kidney failure and diffuse bleeding. It killed more soldiers in the Spanish American war than battle injuries. It slowed work on the Panama canal and infected people in Boston and other US port cities. In the early 1900's it was found to be caused by the bite of the Aedis aegypti mosquito and mosquito control led to significantly better control of the disease. It was still a considerable problem in places where mosquitoes could not be controlled so a vaccine was created in 1930 which has been very effective in reducing disease. Travelers to parts of South America and Africa are still at risk, as are residents. Unfortunately the vaccine can rarely cause a version of yellow fever in some people and can cause a fatal inflammation of the brain. The newer version of the vaccine is less likely to cause these side effects, but they can still occur. Despite the known side effects, travelers to many countries need to provide proof of vaccination in order to enter if they are arriving from an area with known risk of yellow fever.

The Swine Flu debacle
In 1976 there was an outbreak of swine flu (H1N1 influenza) in Fort Dix, New Jersey. One army recruit died, and there was fear that this virus, which was similar to the one that caused the influenza pandemic in 1918, would spread across the country. In fact, the only infections were at Fort Dix and 40 million Americans were vaccinated against it, resulting in quite a number of cases of Guillain Barre syndrome, an immune mediated paralysis that can result from both infections and vaccinations. On the bright side, apparently immunity from that vaccine did last until the most recent pandemic in 2009, so the folks who got that vaccine were less likely to come down with our most recent H1N1.

Where do we stand, legally?
The laws about vaccinating children differ by state. All states require some vaccinations in order to attend school, but some states offer exemptions, not just on the basis of medical issues such as immune system diseases, but on the basis of parents' religious or philosophical beliefs or values. With the recent measles outbreak, children who did not receive measles vaccination are being kept out of school, and some schools in California have reported up to 65% of students not being fully vaccinated due to their parent's objections. Some suggest more stringent requirements for vaccination, eliminating exemptions on the basis of religious or philosophical beliefs. West Virginia has already taken this step and several other states have only medical and religious exemptions.

Stupid people? Not so fast...
So are "anti-vaxxers" stupid and selfish? I don't think so. At least not necessarily more so than anyone else. Some of their concerns are not really valid, like worrying about the presence of tiny amounts of mercury as a preservative in some vaccines (hardly any now) and the possibility that multiple vaccines given at the same time will overwhelm the immune system (it's actually built for that: picture what happens when a child eats a handful of dirt.) There are some reasonable arguments against vaccinating ones children, even though I may not agree with them. Since vaccination protects the population and because it can be a big money maker for clinics, pharmacies and drug companies, it would not be surprising if we didn't hear much about occasional side effects. So suspicion is not entirely unwarranted. As a loving parent it is hard to be a party to 24 immunizations before the age of 18 months, especially since most of them involve sticking a needle into tender baby flesh. When a disease, like measles, seems to be vanishingly rare, how wise is it to expose one's children to an immunization which definitely has associated side effects (though not autism)? Some of the parents who reasoned in this way now have children with measles and many more have children who aren't able to attend school because they are not vaccinated. Are they selfish? They probably didn't think they were, but the vaccine isn't 100% effective and it isn't given until after a child's first birthday, so infection with measles does put other children, especially babies, at risk of measles and its complications.

Civil discourse--perhaps we should give it a try
How do we, as a society, want to deal with this issue? Americans are fiercely individualistic compared to many other countries, and we usually tell the government that they have no jurisdiction when it comes to our personal decisions. We draw the line (but it's a very wiggly one) at personal decisions that put our children or other people at risk. That's how our rules about vaccination came about in the first place. We, as physicians and nurses, now tell people about side effects of vaccines at the time they are administered, but we don't, in fact, allow them to refuse them for their children unless they also want to opt out of public school, except in the case of religious or philosophical beliefs. Do we want to close those loopholes as well? What we really ought to do is have civil and respectful conversations. We should carefully weigh both the value of controlling vaccine preventable and otherwise untreatable diseases against the actual observed side effects of vaccines. We want to support scrutiny by organizations that have as little vested interest as possible, such as the CDC. We want both sides, vaxxers and anti-vaxxers to avoid black and white thinking.