The Dirty Little Secret about End of Life Care

Since the first in my series of "Dirty Little Secret" posts went over so well, here's the next one. Unlike the first, though, this one really is directed at patients as well as doctors, so listen up everyone:

Unlike Sarah Palin the politicians and talking heads discussing non-existent "death panels," I have had many conversations over the years about options for medical care at the end of life, with lots of patients of many different ages and situations. Interestingly, just about everyone ends up saying one of two things.

1. Just keep me comfortable and let me go; no heroic measures; etc. or
2. I want everything done.

The problem is that very few patients really understand what "everything" means, in all its gory, grotesque, excruciatingly painful detail. The needles, tubes, drugs, restraints, surrounded by all the machines; the blinking lights and beeping alerts that never stop (there are so many, there's always one or more going off at any given time); the cracking of ribs and smell of singed hair at the final resuscitation, with the same inevitable result. Who in their right mind would want to go through that?

The answer, of course, is that no one would. The only reason they say otherwise is because they don't understand what it is they are asking for. It is therefore our job as physicians to explain to them -- as bluntly as necessary to ascertain comprehension -- why "everything" is not really what they want.

Think about what this means. It means that once everyone fully understands the horror that is "everything," it becomes safe to make the default assumption, when presented with a stranger in extremis, that they want to be kept comfortable and allowed to exit this world with dignity.

A significant problem arises when people conflate the issues about medical care at the actual end of life -- when it is medically apparent that death is inevitable -- with questions about quality of life. Is life worth living tethered to a ventilator? How about dialysis three times a week for five hours? What if you couldn't eat or talk, sustained by tubes in your stomach and neck, but were able to see, hear, communicate (via computer or even pen-and-paper), walk, drive, etc.? How much discomfort would you be willing to tolerate from chemotherapy side effects for another month of life? How about six months? A year? These are different questions that deserve different discussions.

Interestingly, when those discussions are held in advance of their actual need -- ie, in the hypothetical -- people who say things along the lines of, "I would never want to live like that," frequently find themselves with different views when faced with the reality of the situation. (Ironically enough, these same people are often reluctant to accept other people's decisions. I once had a ventilator-dependent patient who requested its removal, knowing it would lead to her death, and was confronted by medical professionals appalled at my plan to accede to her wishes.)

So where does that leave us in terms of "advance directives"?

It is meaningless to discuss "how would you want to live?"-type issues in the purely hypothetical, because the discussion will always be repeated when the actual situation arises. It's like discussing college with a pre-schooler. It can be discussed in generalities, with the understanding that actual decisions can't be made yet, and that opinions expressed now are very likely to change.

As for actual end-of-life care, informed patients just want to be kept comfortable. Uninformed ones, those who want "everything" done, need to be educated as to why they do not, in fact, want to be tortured to death between CPR and the ICU. Ultimately, the default becomes what it should be: dignified comfort care for all.

At this point in time, we physicians need to concentrate our efforts on expanding the general public's understanding of the limitations of aggressive interventions at the end of life. Some may wrongly construe this as an attempt to limit patient "choice" inasmuch as a specific course of action -- "doing everything" -- needs to be actively discouraged. As physicians, we have an obligation to prevent our patients (and their families) from inadvertently increasing the suffering that ensues from futile end-of-life care. This is best accomplished with compassionate education. Whether this occurs in the context of an office visit or a concerted public service campaign matters little. We need to change the cultural default in this country from "do everything" to "comfort care only." Americans have to grow up and realize that they are not immortal.

Op Note

That Hatchling sure is enjoying his senior year. Look what he just sent me:

Date: 9/24/09 12:30
Patient ID: Surgical Medical Student
Preop Diagnosis: Cellulitis with abscess, R medial ankle
Postop Diagnosis: Same
Procedure: I&D R medial ankle pustule
Surgeon: Surgical PA
Assist: Surgical Medical Student (aka the patient)
Anesthesia: Beer was requested and denied by the PA
Blood Loss: none
Urine: not measured

Procedure Note: Patient removed right sock to display prominent 1.5cm diameter pustule overlying an erythematous region of approximately 10cm in diameter posterior and inferior to the medial malleolus. The procedure and risks were discussed including loss of sensation, generalized sepsis, and possible need for amputation should complications arise; informed content was obtained. Liability was discussed and patient agreed to waive all liability for the procedure.

Patient requested a beer for anesthesia but this was deferred due to location and unavailability. Patient proceeded to drape in a non-sterile fashion with absorbent chux. He then prepped his own foot with rubbing alcohol and betadine.

At this time the PA instructed him to lie back and relax. She then attempted to shield the incision site from the patient. The patient proceeded to call the PA an ass, and promised not to move during the incision; he remained seated upright so he could see. The PA proceeded to make a 1cm postero-inferior incision across the middle of the lesion. Immediately purulent material flowed from the wound causing the two nursing students observing the procedure to say "ooh". Despite the stoic demeanor of the patient, no phone numbers were obtained.

In total about 2-4cc of purulent material was expressed from the wound with not so gentle force. Pressure was again used to ensure hemostasis. It should be noted that the PA seemed to take pleasure in causing the patient to grimace with excessive pressure. The wound was dressed with a 2x2 gauze and the patient was told to return to work immediately because they needed the room. Patient was discharged with a script for Keflex 500mg QID to treat the remaining cellulitis. Patient was instructed to keep the leg elevated when possible and continue using warm compresses to treat the remaining cellulitis. Patient is expected to be noncompliant and lost to follow up.

Signed: Surgical Medical Student 4

I have seen and attest to the above statement as the attending
practioner: Surgical PA

The Problem With "Quality"

Many other people have addressed this issue many times over. Here's my latest essay on the subject, that also appears here:

Imagine a town with two barbers. One of them sports a magnificent haircut; the other’s head resembles the nest of a psychotic bird. Which one would you choose to cut your hair?

If your first choice is the immaculately coiffed one, stop to think about how things must work in this town. Since there are only two barbers, obviously they cut each other’s hair. If you’re looking for a great haircut, wouldn’t you prefer the person who created it to the one sporting it?

Now imagine a town with two doctors. All the patients of the first doctor have perfectly controlled blood pressure and diabetes. They all exercise regularly, none of them smoke, and all of them have received all age-appropriate preventive health screenings. Many of the other doctor’s patients, on the other hand, have blood pressure and glucose readings off the charts. Smokers are well-represented in the practice, and preventive health screenings are hit-or-miss.

Medicare’s recent “pay for performance” (P4P) initiatives purport to reward doctors financially for so-called “quality” care. According to the data, the first doctor in the above town would be raking in the bonus money, while the other would be facing stiff penalties.

But which one do you think is the better doctor?

What if the first doctor decided that the best way to improve his P4P data was to discharge all the patients from his practice who, for whatever reason, failed to achieve acceptable control of their blood pressure and diabetes? Or who didn’t stop smoking? Or who refused to get a flu shot, or go for a mammogram, pap smear, or colonoscopy? As it happens, there’s nothing in the Hippocratic Oath against discharging patients. With enough money at stake in a P4P arrangement, this is inevitable.

What happens to these people? They’d be in big trouble if the other doctor in town also refused to take care of them. By continuing to work with patients whose diseases are not as simple to control, who may be reluctant or unable to take time off from work to undergo preventive testing, or who are too ornery to follow medical advice even as they continue to seek it out, that physician is also providing “quality” care.

The biggest mistake made by Medicare, private insurers, and other entities seeking to improve medical care by rewarding “quality” is mistaking it for “performance”. One of the most egregious examples of this is the so-called “four hour rule” for antibiotics for pneumonia. Medical evidence does indeed support the idea that when patients have pneumonia, they do better the sooner they are begun on antibiotics. But by tying hospital compensation to a rigid four-hour rule, many more patients end up receiving unnecessary antibiotics when the diagnosis of pneumonia takes more than four hours to establish. The financial penalties from failing to meet the standard are significant; they can include risking the institution’s accreditation status. Thus, a “performance” standard results in a lower quality of care for many patients without pneumonia exposed unnecessarily to powerful medications.

Quality is like pornography; you know it when you experience it. But it cannot be measured; only assessed, and then only subjectively.

Quality in medical care has more to do with meeting the needs of individual patients and less to do with checking off boxes on a preventive care form. Some patients want detailed explanations of every facet of their medical care. Others prefer a more “Just the facts!” approach. The mark of a high quality physician is the ability to bring more than one style of communication to bear in meeting the needs of a varied patient base.

How well we succeed in controlling diseases that are primarily dependent on patients’ lifestyle choices is measurable, and therefore tempting to use as proxies to reward, but ultimately irrelevant. We need to be very careful when we talk about “quality” in medical care, because patients can easily end up with much more than a bad hair day.

Everything Else You Need to Know About the Flu

After posting this, which ended up being mainly about the H1N1 flu shot, I realized there were a few more things you really ought to know about the flu.

How do I know if I have the flu?

As I said before, it isn't subtle. In addition to a fever, headache, and body aches that make the day after five games to 15 that all went to universe point feel not so bad, the onset is often quite abrupt. You wake up feeling fine that morning and by lunchtime you can't stand up anymore.

You don't need to go to a doctor or health center to "make sure" you have the flu. The diagnosis is usually made on the basis of the medical history (what you tell the doctor about how you're feeling and how it started) anyway, so the best thing you can do is to stay away from other people (as are often found in a doctor's office or health center). There isn't much they can do for you either.


What do I do if I get the flu?

As I also said before, most people who are young and generally healthy get over the flu just fine. The most important thing you can do is REST. This does not mean going to class just to get the notes. It does not mean going to practice just to impress everyone with how dedicated you are. It definitely does not mean having a few brews with your buds because if your head is pounding anyway you may as well get a buzz on as well. It means stay in your room, preferably in your bed. If you live close enough to school, call your parents to come get you and stay in your room at home instead.

You can take acetaminophen (Tylenol) or ibuprofen (Motrin, Advil). It really will make you feel better. Not perfect; not well enough to get up and do stuff anyway; but better. So will drinking lots of fluids like water, juice, and chicken soup. NOT beer.


How can I keep from getting the flu, or spreading it if I have it?

Because the flu is spread by respiratory droplets, containing them is the key. The first thing you have to do is re-learn how to cough. You know how your mom taught you to cover your mouth with your hand when you cough? DON'T DO THAT. It just gets all those flu-virus-filled respiratory droplets all over your hands, which then touch door handles, keyboards, as well as other people and things that other people touch. Unless you're going to wash your hands with soap and water for 20 seconds every single time you cough or sneeze, DON'T COVER YOUR MOUTH WITH YOUR HANDS.

What should you do? You boys are going to love this, because you've been doing it for years and now no one can yell at you for it anymore: cough into your arms, which are hopefully covered with sleeves. If you're wearing just a t-shirt [and what the hell are you doing wearing only a t-shirt in the middle of winter when it's frickin' COLD outside!?!?] then cough into your shoulder.

You should still wash your hands frequently, preferably with soap and water for 20 seconds (the latest thing is to call it the time it takes to sing the "Happy Birthday" song), but those alcohol-based hand sanitizers are better than nothing.

The other really important thing to do is to stay away from sick people if you're healthy, and healthy people if you're sick. It's all about those stinkin' respiratory droplets.


What about school?

Many schools and colleges have developed policies to deal with flu this year. The Pennsylvania State system (includes IUP, Penn State, West Chester, Kutztown, etc.) has a policy encouraging sick students to "self-isolate", ie, stay in their rooms or go home. It looks like they're also going to be pretty liberal about excusing absences and allowing make-up work. For what it's worth, though, this should not be looked at as open season for slackers. I have no doubt that plenty of students will abuse the relative laxity of these policies, and absenteeism will probably be ridiculous even if the flu is really mild. Still, I expect better of the Frisbee team. I'm happy to bring you homemade chicken soup if you get sick, but you know I'll be just as quick to come kick your asses if you start acting like a bunch of lazy slackers.


What's Tamiflu?

Tamiflu is the name of a medicine that can be prescribed for people who get the flu. All it does is shorten the duration of illness by only about a day, on average. It needs to be prescribed within 24 hours of the onset of symptoms to do even that. It has side effects like nausea and vomiting. All in all, it's not much of a trade-off for young, generally healthy people, so I'm probably not going to be using it much for them.


When should I worry?

If you get a really bad cough that's bringing up a ton of stuff (called "sputum") of any color along with a very high fever, trouble breathing and/or bad pains in your chest, you might have pneumonia. Call a doctor or go to the health center.

If you have a really bad headache AND your neck is so stiff that it hurts to move it, call a doctor or go to the health center.

I usually tell people to call me if they feel really really bad, but the problem with the flu is that it can make you feel pretty bad, and people who don't get sick much don't know just how "bad" is bad enough to worry. Leave it at this: If you have anything in addition to fever, headache, body aches, slight sore throat and cough, get them checked out. If that's all you have, suck it up and wait it out.

Anything else?

Not that I can think of. Email me or ask in the comments.

Everything You Need to Know About the Flu

Dear Innuendo Ultimate,

Earlier today I promised to tell you all about the flu, but those first two games were so close and hard fought -- and we were all so wiped by the end of the third one -- that I never got around to it. Here's what I wanted to tell you:

Influenza -- flu -- is caused by a respiratory virus. That is, a virus that comes into contact with the inside of your nose or mouth (the top of your respiratory tract). It's passed from person to person through "respiratory droplets" produced when you cough, sneeze, or wipe your nose on something that someone else then touches, and in turn touches to their own nose or mouth.

The disease it produces is different from just a cold. More than just a little sore throat, runny nose, and cough, flu usually produces a fever (temperature over 100 degrees, taken by mouth), body aches, and headache, along with a scratchy throat, cough, and stuffy or runny nose. It's not subtle. Patients often tell me they feel like they've been hit by a truck. "Body aches" means everything hurts; lots of people say, "Even my hair hurts." Flu really knocks you on your ass. If you're not sure you have the flu, you probably don't.

Most people get over the flu just fine, though it can take longer than you want it to (up to 10-14 days), but it can weaken some people enough so that they get other infections (like pneumonia) on top of it. About 30,000 people a year, on average, die from the flu; usually the very old, the very young, and people with medical conditions like diabetes and asthma that make them susceptible to flu complications.

The flu virus mutates a lot. Even through the regular flu season (fall/winter, when it's cold, and people -- and their respiratory droplets --cluster inside together) the virus can mutate slightly. Once you get a specific flu virus, you form antibodies to it; this means you can never get it again. Other mutations of the virus can still make you sick, though. Still, over a lifetime, you accumulate immunity to the various versions of the virus that circulate each year.

Different mutations of the virus act differently. They may be harder or easier to catch ("infectivity"); they can cause a milder or more severe illness ("virulence"). These variables are independent of each other.

Every year the CDC chooses three flu strains they think will most likely circulate that year, and they make a vaccine against those three. We call this the "seasonal flu vaccine", and it changes each year. In general, it is recommended for those groups above (old, young, and with certain medical conditions). I tell people who ask me that I recommend it for anyone who doesn't want to get the flu.

Here's what's different this year:

Back in the spring, a new ("novel") flu virus mutated from a version that infects pigs (hence the "swine flu") and began infecting people. Named for the proteins on its surface, it's known as H1N1 (also called "hinny" by morons who think that's a word). So far, this version of the virus is very contagious (highly infective; easy to catch) but not terribly virulent (causes mild disease). Because this form of the virus hasn't circulated for many years (probably since the 1950's), it turns out that younger people are more susceptible to it than older people. Lots of people have been getting "swine flu" all summer.

So what's the big deal?

Back in 1918 there was a huge pandemic (pandemic = worldwide epidemic) of H1N1 flu that killed an estimated 50,000,000 people. What was worse was in addition to the very old and very young, an unusually large number of young, otherwise healthy people died from it. No one is quite sure why. Probably a lot of it had to do with the general state of medical care back then (no antibiotics, ventilators, and all sorts of other fancy supportive care). Also, it was the height of World War I, with troop ships moving lots of soldiers all over the place, spreading the virus like crazy while they were all crammed together. Many people think it was because the virus was novel, so very few people had any immunity to it. Still, there seemed to have been something about that particular virus that made it much more virulent than others.

Remember how I said that the virus can mutate even during the same flu season? There is the concern that although the current version of H1N1 isn't all that virulent, it could mutate and become much more so. We're unlikely to see 50 million worldwide deaths again, but it could certainly get pretty bad.

It takes about 6 months to make seasonal flu vaccine, so by the time H1N1 was identified, it was too late to include it in this year's mix. They did manage to make a separate H1N1 vaccine, though, and it should be available by mid-October. It's recommended for everyone aged 6 months to 24 years, pregnant women, caretakers of babies under 6 months old, and anyone with medical conditions that make them more susceptible to flu complications. (Also health care workers; I'm not sure if that technically includes athletic trainers.)

The flu shot does not contain flu virus. It cannot give you flu. It may make your arm sore for a few days, and it might cause a mild illness, but you cannot get the flu from it. It takes about two weeks for it to work completely, so if you happen to get the flu before then, it wasn't from the flu shot. (There's also going to be something available called a "live attenuated" version of the vaccine that you shoot up your nose. That's a little different, but is still hugely safer than getting the flu.)

The government is purchasing the vaccine and distributing it for free. There should be plenty of doses for everyone in the recommended groups, so there are no expected availability issues. Doctors and clinics can charge you an "administration fee", but that shouldn't be more than about $10, and I strongly suspect many places won't be charging it.

So please, even if you don't want a regular (seasonal) flu shot, find a way to get an H1N1 vaccine. The whole thing may very well turn out to be a bust, but this is truly a case where it is better to be safe than dead sorry.


Please pass this along to all your friends.

Looking forward to the rest of the fall Ultimate season.

Love,
Mother Hucker

You Know You've Arrived When...

...While watching your kid's Ultimate Frisbee team play at Sectionals, the kids want to chant a somewhat more risque cheer than usual. The captain glances around furtively and, while looking straight at you, says:

Good, there are no adults around.

Etiology

I've learned something new today, courtesy of the NinjaBaker, who has just discovered the following:

Mad cow disease is caused by E. coli zombies.

Edited to add:

Explanation, per NB:

It was a thought process about E.coli zombies.

Cows get it by being fed their own entrails and feces, which contain E.coli. Prions are mutated proteins which ... could theoretically be from dead E.coli. They attack other proteins, convert them into their own, zombious form and eat BRRRRAAAAAIIIIIIINNNSSS.

I love the logic of scientific offspring.

Looky Here

Check out page 6 of the current copy of Keystone Family Physician, the official publication of the Pennsylvania Academy of Family Physicians.

For anyone without Adobe Flash player and to flesh out this post a bit, here's what it says:

Lucy Hornstein, MD (Valley Forge) is known to many simply as “#1 Dinosaur.” That’s her blogging moniker for “Musings of a Dinosaur,” which she has authored since August 2006. The blog built a huge following and she was asked to write a book about her almost 20 years as a “so-called dinosaur” or “solo practice primary care physician.”

“Declarations of a Dinosaur; 10 Laws I’ve Learned as a Family Doctor” hit the bookstore shelves in August. Published by Kaplan, the book offers advice to others who hung out the shingle, musings to help them survive and, hopefully, thrive in a profession that some think is on its way to extinction or already there.

Not so fast, says Dr. Hornstein, a PAFP member since 1988, who notes her first book is just that and not a new career.

Here’s the opening now posted on her blog….“They say the solo Family Doctor is extinct; gone the way of the dinosaur. Well, I've been in private practice for nineteen years and I'm still kicking, so here's my blog. Until they drag my cold, dead body off into the tar pit, read about my trials and tribulations -- and the joys and triumphs, which are what keep me going. I'm also embarking on a new career as an author. You can read my first book by ordering it below. If anyone worries that I may become so successful with my writing that I will give up my medical practice, rest assured: writing is something I do; doctoring is who I am.”

Read her 10 laws and more at http://dinosaurmusings.blogspot.com/

The actual article also has a picture of the book, and another one of moi. Plus it makes a nifty "whooshing" noise when you click to turn the pages.

This is What I'm Talking About

I have a patient with coronary artery disease.

One of the recommendations for the management of patients with coronary artery disease is that they take a statin medication to lower their LDL cholesterol.

I know this. I prescribed simvastatin, an inexpensive generic statin medication, for this patient.

The results of a recent blood test reveal that the LDL cholesterol is 182. This is too high.

I know this.

Here is what I did:

I called the patient up and said, "Your cholesterol is still pretty high. How often do you forget to take your statin medication?"

The patient admitted that he frequently forgot to take it.

Here is my management plan:

I encouraged the patient to take the medication every day without fail, and after 2-3 months repeat the blood test to see how well simvastatin, an inexpensive generic medication, worked for him.

A week after this, the patient had a routine follow-up appointment with his cardiologist.

Here is what the cardiologist did about the patient's LDL cholesterol of 182:

He switched the patient to Crestor, an expensive brand-name statin medication.

Tomorrow is the Day

My first book reading/signing event will be tomorrow, Saturday, September 12th, at 1:00 pm at the Chester County Book & Music Company.

Although most convenient to anyone in the general vicinity of Philadelphia's western suburbs, anyone and everyone is welcome.

Today

Amid all the memories and memorials, these gentle words helped me today:

Dear friends:

I awoke early today at the end of a long, hard week and suddenly realized what today's date is.

This year has been a very draining year for many, and probably most, of my patients, employees, colleagues and friends. Financially and personally, many people have struggled. Some feel very alone in despair, or feel they are carrying a huge burden and just slogging along, day to day. That certainly describes how I've recently felt!

Eight years since 9/11 became a date permanently etched in our collective memory, two things stand out to me. First, how absolutely horrific the massive loss of life was. My thoughts and prayers go out to the families who lost loved ones at that time, and who are grieving from any other cause since then. Human beings are precious, each and every one. I hold all of you, those I know well and those I barely know, in my heart today. And I am particularly mindful of all the families who lost loved ones eight years ago and were plunged into a maelstrom of grief and rebuilding. I sincerely hope they have been able to move through their grief and heal to some extent, albeit forever with a scar.

Second, I am aware of the best of human nature and our capacity to help each other in tough times. No one has been more brave, or selfless, than the rescuers who went forth to help their fellow citizens in the Twin Towers, the passengers who interfered with the hijackers on flight 93, the soldiers who followed orders despite personal preferences or beliefs and tried to make life better for local citizens in the war that sprung from 9/11/01. The world has become even smaller since then...one country's economic woes affect other countries, one nation's disaster affects its neighbors, and we are surrounded in daily life and in cyberspace by people of many colors and cultures, united in the effort to survive and achieve something positive with our lives.

A Canadian friend at a conference gave me a pin months after the attack, with the Canadian and U.S. flags and "United We Stand." This gesture meant the world to me. I was surprised and grateful when I received messages of condolence and outrage from colleagues in other countries on 9/11. My first reaction on the day of the attack was that people hated America and that we would stand alone as we tried again to pull ourselves up by our bootstraps. You know something? We really AREN'T alone. Helpers are all around us. I will wear that pin today in awareness of that fact.

I am in a helping profession. My staff and I kept working through routine appointments on 9/11 because there didn't seem to be anything else we could do. Eight years later, other people need my help and I'll be there to help them. I am fortunate to be able to support others, but I also have learned from 9/11, earlier and later events that it's ok, and indeed healthy, for me to accept help from other people. I don't have to cope and struggle alone. I hope burned-out colleagues and struggling friends will look for, and accept, kind and hopeful gestures from others, including
perhaps those you are helping today. No matter what we face professionally, personally, financially, we will do it better with a little help from our friends.

Feel free to pass this message along to anyone else you feel might need it. I wish all of you a hopeful and positive day, even as we reflect on the difficult events of eight years ago. I'm with you in solidarity.

Elizabeth Pector, MD
Naperville, Illinois

Taking Beth at her word to pass this along.

Peace.

New Way to Make Any Innocent Remark Seem Dirty

Thanks to (who else?) CrankyProf.

Overheard at a family party, discussing cake:

We have a perfect marriage. My husband doesn't like icing, and I do.

Cranky's response:

Is that a euphemism?

The Dirty Little Secret About Patients as Partners in Health Care

Patient empowerment, shared decision making, patients as partners in their health care; these are the latest buzzwords in this age of consumerism, where patients have morphed into glorified shoppers. Under this alleged new paradigm, it is our idealized job as doctors to explain everything to the patient (after properly diagnosing them, which of course includes explaining everything about each diagnostic test or procedure, including all the possible diagnoses we are thinking about) so that the patient can then make an "informed decision" about treatment.

The dirty little secret is that medicine doesn't work like that.

Despite the abundance of information on the internet, the practice of medicine is more than just the application of an abundance of information. Above and beyond the knowledge conveyed during medical school (half of which is wrong, although no one knows which half) and the experience gained during residency training is the years of day-to-day exposure to that medical knowledge and training experience in real live people -- the practice of medicine.

This is why no amount of information -- whether obtained from me, the internet, or even those really cool collections of pieces of dead trees called "books" -- will ever properly equip a patient to make an actual medical decision. The dirty little secret is that in the final analysis, it will always be doctors who ultimately make decisions about medical treatment.

Although I am technically speaking of paternalism, the concept of one person (who supposedly is more knowledgeable or capable) making decisions for another, I am by no means advocating a return to the days of the "Don't you worry your pretty little head about a thing" doctor-patient relationship. I firmly believe it is my job not just to make the decisions, but to explain to my patients in as much detail as they want and need exactly why I am recommending a particular course of treatment.

I tell my patients that I only offer them choices when it doesn't matter. If your blood pressure isn't controlled on 10 mg of lisinopril, we can either increase it to 20 mg, or add a diuretic. Each of those courses of action is equal in expense, number of pills (it comes in a combination product) and has an equal chance of controlling the blood pressure (and if it doesn't, the next step is the other option; I have a lot of people who end up on linsinopril/HCT 20/12.5.) I think all doctors should do this. When you stop to think about it, it's the only thing that makes sense. It would be irresponsible to allow a patient to choose a clearly inferior treatment option.

The interesting thing is that most patients really do understand this. Many of them tell me in so many words that they expect me to make the decision (and to explain it to them, of course). If I were to do the whole "Here are your choices, you decide" tap dance demanded by the "shared decision making paradigm," not only would I be doing these patients a disservice, but I'd annoy the hell out of them.

The key is for physicians to acknowledge that we actually do have this responsibility. Whether the decision is about antibiotics for respiratory infections or the extent of high tech life support, the final call is ours. If we are honest with ourselves, we will recognize the extent to which we guide our patients to reach the same conclusions we have already drawn.

The bottom line -- the dirty little secret -- is that no, patients cannot truly be partners in their health care. Just because this truth is badly proclaimed by arrogant doctors and ignored by well-meaning but timid ones, it is still true.

Edited in response to comments:

Most of the comments, the ones from patients, missed my point. I am not arguing about the fact that patients ought to be involved in their medical care to whatever extent they wish to be. That is a given. It is also a given that my job is to explain, educate, discuss, negotiate, and do whatever is required to assure patients' involvement in their care.

My point -- the dirty little secret -- is that in the final analysis, patients cannot truly be equal "partners." The anti-paternalism pendulum has shifted too far the other way when timid doctors abdicate their decision-making responsibility in the name of "patient autonomy."

(And as for the anonymous pharmacist complaining that lisinopril is a crappy drug with formulary issues, what planet do you spend most of your time on? Sure, there are lots of different drugs available, but lisinopril is a perfectly reasonable first choice for many people. It's also on everyone's $4.00 generic list (10 and 20 mg, with and without 12.5 mg of HCTZ), so f*** the formularies.)

One last time:

I'm amassing quite the collection of straw men in the comment trail. I am neither saying nor implying that doctors make decisions in isolation from their patients' preferences and individual situations.

Think of it this way: what do you do when the patient makes the wrong choice? Not just shades of gray, like doubting a physician's judgment call about prescription recommendations, but black-and-white, no-doubt-about-it, life-threateningly wrong decisions. "Choices" like the one made by Shadowfax's patient with a curable tumor in her leg who is refusing chemotherapy. "Decisions" by a woman in labor with a transverse fetus refusing a c-section because she doesn't want to be the "1 in 3 women who are getting their babies cut out of them."

Are you all really telling me you'd be willing to let patients suffer and even die, all in the name of "shared decision making"?

That's the "dirty" part of the secret.

(Thanks to DB for backing me up on this one.)