Monthly Archives: September 2009

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What I learned from my first Mad as Hell Doctor week

I spent a week with the Mad as Hell Doctors, as a Mad as Hell Doctor, doing town halls about health care and about single payer, HR676. We went from Seattle to Denver, with 1-3 town halls a day, and then I flew home.

They are still on the road and I rejoin them tomorrow, for the last week. We will end in Washington DC, with a caravan and a white ribbon protest at Lafayette Park on September 30, 2009 and October 1, 2009.

I have been home for just under two weeks and am STILL trying to sort out what I learned and feel. I suspect it will take months.

1. I am not alone.

2. I am not used to applause.

3. People are brave and noble.

First, I learned that there are other doctors who truly put patients first and will go on the road for 3.5 weeks to prove it.

Dr. Mike Huntington, a radiation oncologist. He says that in the last 10 years of practice, the treatment for prostate cancer tripled from $17,000 to $54,000 because of fancier technology and computers. The result? Minimal to no better results for the patient. It horrified him. He quit. He is on the road.

Dr. Joeseph Eusterman, an internist. He did internal medicine, that is, adult primary care, for 25 years. He was in the military. He then switched to Workman’s Comp. He was horrified to find how deeply frightened Americans are of their supervisors, of being injured, of speaking up when they are injured and how dysfunctional the system is. He is retired, over 80 years old, and is driving Winnie, the Winnebago, across the country. I pray that I am that strong and determined to do right in my 80s.

Dr. Paul Hochfeld, an emergency room doctor. About four years ago, he got furious at the system and started reading and searching for the reasons our health care cost so much. He started with that question. The writing that made sense led him to call the experts and he asked for interviews. He made a movie, titled Health, Money and Fear. He is furious that our political system is run by money, corporations and that Congress seems to have forgotten the people, with all the corporate money that is thrown at them. He is fighting for reform.

Dr. Robert Seward, an internist. He is horrified that 60% of bankruptcies in this nation are because of health care bills. Think of all the press on people losing their houses: the fact is, they are losing their houses in large part because of health insurance companies and the failure of health care in our nation. He spoke with a Canadian man on the trip, who said, “Why don’t you Americans take care of your people?” That is still echoing among us. Dr. Seward says, “I was ashamed. We don’t. We Americans don’t take care of our people and we could and I am ashamed.”

Dr. Margaret Flowers, a pediatrician. She is working for Physicians for a National Health Program (PNHP) as a Congressional Fellow. She wants single payer on the table in the Congressional discussion. She was arrested for refusing to leave Senator Max Baucus’s office in May 2009. She is fighting for single payer.

I had never met these people before I joined them in Seattle. I was nervous about it: a road trip with strangers and talk into a microphone? But it was like coming home and it felt right.

Second, I learned that I am armored against criticism: it’s praise that I don’t know how to handle. The day before the trip, I spoke to one of the doctors on the phone and he said that I wouldn’t be on the panel of Mad as Hell Doctors in Seattle. I would watch the first town hall and then be on the panel at the next, in Spokane.

At the last moment, they said, oh, no, you are on the panel. I hopped up and left my purse at my seat. I remembered it 45 minutes later and thankfully was able to retrieve it. It would have been difficult to fly home from Denver otherwise.

Each doctor had 1-3 minutes to say why they were Mad as Hell. I winged it, and that was not a problem, because I AM Mad as Hell at our present medical system, the drug companies, the insurance companies and could go on for hours. Other doctors at my hospital would no doubt roll their eyes and say that I DO go on for hours.

I am used to being ignored, marginalized, told “we’re concerned about you”, told “we want you to succeed,” pressured and fired. There were secret meetings about the call schedule that I was not told about because they didn’t want me there. I’m stubborn, used to it, speak up anyhow and armored.

But in Seattle, I said a 2-3 minute piece of what I’ve been arguing about for 20 years.

People clapped. Applause.

I sat down. I wanted to crawl under the table and hide behind the white sheet covering the front. I was dumbfounded. I didn’t know how I felt. I concentrated on what the other doctors were saying, one after another, instead.

The other doctors thanked me, glad to have a woman doctor, glad to have a family practitioner and a rural one to boot. At each town hall, we talked to anyone who came, before and afterwards. The program itself was about 90 minutes but with the time talking to people before and afterwards, it was more like three hours. We did one to three programs a day and drove in between. It was physically and mentally tough. Residency trains us to put away emotions until later, so that’s what I did. The doctors are all tough and no one wanted to complain too much with our 80 plus year old gung ho and tough as a boot.

After I got home, the strongest feeling was wanting to weep. My Death Panel writeup had been in the local paper and four people thanked me in three days. I didn’t know what to do with that either. Under all the armor is someone who wants to be appreciated and loved. I’m used to criticism but praise went through the armor straight to my heart and to a part of me that I didn’t know was there. That person appears to be rather young and undeveloped. She is going to take some bringing up. Meanwhile, I asked for help in the form of my improvisation teacher. How, I asked, do I handle applause? He gave me clear specific instructions. I can do what he said, even if the emotional stuff inside is hiding under the table. Doctor training kicks in easily.

Third, I learned how people from Seattle to Denver, across the country, will stand up if given the opportunity. Part of the program was the Mad as Hell Minute. ANYONE, whether they agreed with us or not, could come forward, say their name and be on camera. They said why they were Mad as Hell about health care. They did not have to agree with us, with single payer, they could argue the opposition. But everyone was supposed to listen. Adam Klugman, our creative director, spoke of how it was an exercise in speaking up to our friends and community members and an exercise in listening to each person. And anyone who spoke, might show up on Youtube.

At some programs, one person would get up to speak. People were shy. Then a second would get up, then two more and then we would have a line. Not everyone spoke, but most of the people at the indoor town halls spoke. They told heartbreaking stories of family members, friends, their own loss of a job with a loss of insurance and people who weren’t being treated, or died because they could not afford treatment.

They were brave and honest and that made me want to weep too. And it was inspiring, to see people speak up. I hope that Congress is watching the Mad as Hell Minutes. These are the people they should be listening to and responding to, not the 1-2 million dollars in lobbying paid for by the insurance companies DAILY.

I have been cursing up a storm in my diary. I’m going back on the road, leave tonight for Seattle, take my daughter to her grandmother, and rejoin the Mad as Hell Doctors for the last 6 days. I feel blessed. The cursing is to balance me out; there’s no room for the grumpy, irritable, argumentative part of me on the trip so it is having a field day before I go. Back to hear people’s stories and applaud. And I have faith that change is in the air.

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Obese smoking couch potato

I went on the Mad as Hell Doctor’s tour for a week. I went from Seattle to Denver with stops for town halls one to three times a day. We talked about single payer health insurance, HR 676.

One question or objection to a single payer system was: Why should my money go to pay for some obese person who drinks and smokes, doesn’t exercise and doesn’t eat right?

Three answers to start with:

1. You already pay for them.

2. Put out the fire.

3. People want to change.

First: You already pay for them. As a society, we have agreed that people who show up in an emergency room get care. Suppose we have a 53 year old man, laid off, lost his insurance, not exercising, not eating right, smokes, drinks some and he starts having chest pain. Suppose that he lives in my small town.

He calls an ambulance. They take him to our rural emergency room. Oh, yes, he is having a heart attack, so they call a helicopter to life flight him from small town hospital to a big one in Seattle. This alone costs somewhere between $7000 and $12000. Now, do you know how many clinic visit he could have had for $7000? To see me, a lowly rural specialist in Family Practice where I would have looked at his blood pressure and nagged, that is, encouraged him to stop smoking. We would have talked about alcohol and depression. And who is paying for the helicopter meanwhile? All of us. The hospital has to pass on the costs of the uninsured to the rest of the community, the government is paying us extra, with a rural hospital designation. 60% of health care dollars already flow through the government. One estimate of the money freed from administrative costs by changing to a single payer system is $500 billion.

Taking care of people only when they have their big heart attack is ridiculously expensive. It is a bit like driving a car and never ever doing maintenance until suddenly it dies on the highway. No oil, tires flat, transmission shot and ran into a tree in the rain because the windshield wiper fluid had been gone for a while. I get to take care of Uncle Alfred. He is 80 and has not seen a doctor for 30 years and is now in the hospital. “But he’s been fine,” says the family. Nope. He has had high blood pressure for years, that has led to heart failure, he has moderate kidney failure, his lungs are shot from smoking, turns out he developed diabetes sometime in the last 30 years and he’s going blind. Can’t hear much either. We have a minor celebration in the ICU because he doesn’t drink, so his liver actually works. He goes home on 8 new medicines.

Secondly: Put out the fire. When someone’s house is burning down, as a society we do not say, well, she didn’t store her paint thinner right or trim her topiary enough and she has too many newspapers stacked up. We go put out the fire. Putting out the fire helps us as a society: it keeps the fire from spreading to other houses. It saves lives and is compassionate. We think firemen and women are heros and heroines. And they are.

In the past, a homeowner would have to pay for fire service and would have a sign on their home. If the house was on fire and a different company was going by, that company wouldn’t put out the fire. We have the equivalent with health insurance right now. It would be much more efficient and less costly to have a single payer. Medicare has a 3% overhead: it is a public fund paying private doctors and hospitals. The VA is a socialized system, with the hospitals owned by the government and the medical personnel paid by them.

When someone asks why they should help someone else, I also know that they haven’t been hit yet. They have not gotten rheumatoid arthritis at age 32 or had another driver run in to them and broken bones or had another unexpected surprise illness or injury that happened in spite of the fact that they don’t smoke, don’t drink, eat right and exercise. Everyone has a health challenge at sometime in their life.

Third: people want to get better. Really. In clinic I do not see anyone who doesn’t hope a little that their life could change, that they could lose weight, stop smoking. True, there are some drinkers who are in denial, but I will never forget taking the time to tell a patient why he would die of liver failure if he didn’t stop drinking. He came back 6 weeks later sober. I said, “You are sober!” (We don’t see that response very frequently.) He looked at me in surprise: “You said I’d die if I didn’t stop.” He never drank again. It made it really hard to be totally cynical about alcohol and I can’t do it. People change and there is hope for change. I feel completely blessed to support change in clinic and watch people do it. They are amazing. But they need support and they need someone to listen and they need a place to take their fears and their confusion. Primary care is, in a sense, a job of nagging. But it is also a job of celebration because people do get better.

We are already paying, in an expensive, inefficient and dysfunctional way. It saves money to put out the fire. People want to get better. Winston Churchill said, “Americans always do the right thing after they have exhausted all other possibilities.” It is time to do the right thing. Single payer. The current bill is HR676. We can and we will.

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Death Panel 2

I had three immediate choices of what to do this morning.

1. Go to the Quilcene Fair with my daughter, her friend and another mom and an almost 1 year old.

2. Go on the Victorian Historic House Tour, a yearly fund raiser for the local hospital auxiliary.

3. Go to visit a patient that I have known for about eight years who will probably die soon of heart failure.

Which did I most want to do?

3. Visit my patient and she is a friend too.

At this point, with the present technology, we doctors CAN’T keep people alive on a machine. We might be able to prolong life some. Hours, days, weeks. The case where someone can stay alive on a machine is actually exceedingly rare, and they will NOT live forever either. Eventually people die.

I visited my lady at home. She looks rather frail and awful but she is coherent, recognized me and we had a lovely visit for nearly thirty minutes. She has heart failure and has outlived all predictions by years. Heart failure is pump failure. The heart is a pump made of muscle and is supposed to pump out 55-70% of the blood in the left ventricle with each beat. If it pumps less than that, the person has heart failure. My lady was down to 17% at one point and has needed oxygen for years. It will probably not be her heart that is the final problem: her kidneys are failing more and more. We are getting to the place where the balancing act becomes impossible. If we use medicines to make her heart pump adequately, then her kidneys fail. If we fix the kidneys, we lose the heart. If the pump isn’t working, the fluid builds up in her lungs and that feels terrible. Kidney failure slowly and gently lulls people to sleep; going to sleep until one does not wake up is a farewell with much less suffering.

I was very pleased to be able to visit her. She has lived far beyond expectations because she is smart and stubborn, comes to the hospital when she is sick, and has single payer insurance: that is, medicare. We spent much of the visit talking about the political system. She wants a single payer system for everyone too and was glad to hear about the Mad as Hell Doctors.

I called the doctor who told me that my lady was worsening and thanked her. She asked if our patient would make it through the weekend. I said that I thought so, but since she is refusing lab work, we don’t really know. She might be worse tomorrow.

There seems to be fear that extending medicare to everyone will mean that “granny will die from refusal of care.” Granny dies now. Everyone will die eventually. I am hopeful that I have many years yet, but none of us know. The fear that care will be rationed ignores the concerns that I have about the end of life: we don’t discuss it and so there is enormous fear and confusion; and that some of the treatments add only hours or days or weeks at enormous cost.

When I first moved to Port Townsend, I was taking care of many elderly frail sick patients. I went to our internist, Dr. L.

I said, “I keep seeing very ill patients in their 80s and 90s that have pulled through THIS hospitalization, but that I think will probably die soon. They and their families don’t seem to know it. What should I do?”

Dr. L. said, “You do them a great favor if you tell them. If you have a frank discussion with them, they and their families can make decisions and have a special time. Doctors do not tell patients often enough.”

Since then, I have had that discussion many times. It is never an easy discussion but it is important and feels right. I say that I might be wrong and would be happy for the person to live 10 more years and prove me wrong. We often discuss how much care they want and whether they would want to die at home. If we can have the family in the discussion, all the better.

Once I had a call from the daughter of a patient whose name I knew. The patient saw my partner. I said, “Forgive me, but I know your mother’s name and I heard that she was dying.”

There was a long silence and the daughter said, “I wondered if she was, but no one said anything, so I thought I must be wrong.” The daughter had nearly called an ambulance because she was afraid her mother was uncomfortable, but she also knew her mother did not want to go back to the hospital.

We were able to discuss what was happening and how to keep her mother as comfortable as possible. The daughter was to call me back if they needed transport to the hospital to ensure that her mother was comfortable. The call, however, was enough. Her mother died at home within 48 hours. We had talked about kidney failure and how the breathing changes near the end. The daughter was frightened. She later thanked me for explaining what was and would happen.

We all need to speak up about death. There will be less fear and better care if we can speak.

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The Introverted Thinker decides about the Mad as Hell Doctors

I got home from the  Mad as Hell Doctors road trip, where we were doing town halls for HR 676 and a single payer system, on Monday night. I had left my daughter, the introverted thinker, on the first day of school and was gone for a week. Her uncle stayed with her for two days at home and then she spent 4 nights at a friend’s house.

She was very glad to see me.

I was inspired and joyous and confused about the trip. Applause when I spoke about why I was Mad as Hell and praise. Praise made me want to weep. I have been looking at that.

On Tuesday I spoke to my mother out law on the phone. Ex-mother in law? I like outlaw better. I want to rejoin the Mad as Hell Doctors for the last week, but it would mean taking the introverted thinker out of school for a week. She gets horribly car sick, so I can’t take her on the trip, but her grandmother is in Rockville, MD. I could leave her with her grandmother and rejoin the team. It’s insane, but worth it, I hope.

Tuesday night the introverted thinker wept at bedtime, said she didn’t want to go and then asked why I thought it was important.

I explained a little. We are the only industrialized country where people go bankrupt from medical bills. Lots of people are not getting care for treatable illnesses and even lethal illnesses like cancer, because they can’t afford it. People don’t have health insurance or they use it all up. We have the most expensive health care in the world yet are ranked 37th overall for health care. And the insurance companies first job is to make a profit. The money that they and their investors pocket could go to health. No, the government won’t do it perfectly, but exactly what in your life is perfect? And driving from Seattle to Denver, the roads of the United States and the rest areas remind me: this is MY country. The people of the United States agreed to have the government help maintain roads. The people can decide that everyone has a right to health care. Our government does not belong to corporate America. I will make a noise until Congress remembers that we the people are the ones who vote: not the corporations, no matter how much money they have. The insurance companies are paying 1-2 MILLION dollars daily to lobby to keep their profit, at the expense of someone’s health. Thirty percent of the health care dollars go to administration and profits and that is not where I want it to go. Health care for health, not for profit!

Then I dropped the topic for two days, to let her think.

Thursday night I brought it back up.

Here is the thinker’s logic: she wants to be in 4 A, the school club that stands for Attitude, Academics, Attendance and Activities. She got a 63% on her first language arts paper, all because of spelling. She inherited my math/music brain, not her father’s visual spelling brain. She is busily attacking spelling, like a tiger, but she says that she doubts she can get an A in that class. Therefore she is willing to defer 4 A until next quarter and she is willing to let me go with the Mad as Hell Doctors. With a pre-excused absence, it does not count against the attendance for the 4 A and she is considering asking for extra credit work to make up for that initial spelling score.

I love watching her make her way through emotion and logic. I am sure that she is also thinking about the health care issues, though she is reserving comment.

And I think she is 4A.

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on the road, September 12

I wrote this on September 12, at the Salt Lake City Library.

I am on the road with the madashelldoctors, day 5.

I am a Mad As Hell Doctor because my patients are not coming in. They are calling to get refills because they have lost their jobs, lost their health insurance, are losing their houses, are stressed and frightened. We Americans agree that anyone who shows up at the  emergency room has to have care, but that is last minute care. We give care when someone is dying, their cancer is advanced, their heart attack is happening, they are near death. It is expensive, inefficient and stupid. This road trip brings home that we take better care of our highways and rest stops than we do of our citizens. How can we have life, liberty and the pursuit of happiness without health? Our health is our wealth! Single payer, one system, just like police, highways, our mail — single payer is the way to go! It is time to get mad and make Congress put it back on the agenda! It is an embarrassment to have a Canadian citizen ask, “Why don’t you Americans take care of your own people?” and I want my health care dollar to go 100% for health care, not for insurance company profits and CEO salaries over 14 million dollars yearly. Fire them! Single payer!

HR676! A single payer proposal. Remember that the insurance companies are pouring 1.4 million dollars a day into lobbying to protect their profits!

Follow us on the website and fight the corporate medical behemoth!

Yours,

On the road, incoherant and down to 6% computer power….

Katherine Ottaway MD

1:42pm

Salt Lake City Library

Whew, finally computer access. We haven’t had time.

This morning we awoke to a knock on the door at 5:59 in a Motel 6 in Idaho Falls, Idaho. We were supposed to be on the road at 6:00. I am rooming with Barbara, a researcher from the Department of Family Practice at the University of Washington. We rushed around and left before most of the guys.

On the road, to Pocatello, Idaho, to the Holt Arena Park, S. 18th Avenue and E. Bonneville Street. We were early and went to find coffee for everyone. We wondered for a bit if Starbuck’s had missed Pocatello, but no, hidden in a grocery store.

In spite of the fact that it was 8:30 am on Saturday, nice crowd. Adam introduced the single payer theme, each doctor said why they personally were mad as hell, and then the audience was invited to step up. Each person has one minute to say why they are Mad As Hell. A woman who has been at two previous venues spoke and said that her beloved had committed suicide because he couldn’t pay his medical bills. I hugged her afterwards. She said that she had to leave us now and it was her last chance to tell us. She was very brave.

An elderly woman with a red-tipped blind person’s cane said, “I’m covered but the woman who helps me and cleans house for me has no insurance. She has breast cancer, two lumps removed, but it’s been infected and she has no money for chemotherapy or radiation It is a shame on us as Americans.” People are speaking up and the more people that speak, the more we all realize that it isn’t just a few people but everyone has been touched by this. Two thirds of bankruptcies are for medical bills and we are the ONLY industrialized country where you CAN go backrupt from medical bills.

Our next Town Hall is here in the Salt Lake City Library at 3:00 pm. We’ve been trying to cut the program down to 90 minutes, from two hours. We are getting used to the pattern. Yesterday I woke up feeling like death warmed over from a combination of exhaustion, 4500 foot altitude and one beer (I know, I’m a wimp with alcohol). Got on the road anyhow and Barbara drove the 250 miles from Helena to Idaho Falls while I displayed my talent at sleeping anywhere. By the time we met the caravan, I was shaky but improved and by the time we did the Town Hall at 7:00 pm, I was fine. Adam has nearly lost his voice but still is the MC and everyone is a bit glassy eyed and tired. We have to look at the notebooks to remember which city we are in. “What day is it?” we ask each other.

I will blog when I get a chance.

Town halls coming up:

9/12/09 Orem, Utah: Utah Valley University Student Center Room 206C 7:00 tonight

9/13/09 Rally at Fort Collins, 4:30 pm @ Civic Center Park, corner of LaPorte Ave & Howes street, Fort Collins, Colorado

9/13/09 Town Hall 7:00 pm Greyrock Commons, 2265 Shooting Star, Fort Collins, Colorado

9/14/09 Town Hall 8:30 am Plymouth Congregational Church, 916 W. Prospect Road, Fort Collins, Colorado

9/14/09 Rally Denver 12:00 (noon) West Steps, State Capitol Building 200 E. Colfax Ave, Denver, Colorado

(I leave on a 5 pm plane for my daughter and home.)

9/14/09 Town Hall — Picnic 5:00 pm Washington Park Boathouse, E. Virginia Ave and S. Downing Street, Denver, Colorado

….and I don’t have the rest of the schedule, but caravan from Gettysburg to the White House on 9/30/09 and meet us in Lafayette Park in Washington DC on October 1, 2009!

Originally published on Everything2.

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Rationing Health Care

A little article in JAMA (Journal of the American Medical Association) caught my attention yesterday:

Cancer Drug Costs

Citing the extremely high cost of many cancer drugs that produce only a marginal survival benefit, scientists from the National Institutes of Health (NIH)Clinical Center and the National Cancer Institute are urging the oncology community, regulators, drug makers, and the public to begin to set limits on the use or pricing of such drugs.

The scientists noted that 90% of the anticancer drugs of biologics approved by the US Food and Drug Administration (FDA) in the past 4 years cost more than $20,000 for a 12-week regimen, but many offer an additional survival benefit of only 2 months or less (Fojo T and Grady C. J Natl Cancer Inst. doi: 10.1093/jnci/djp 177 published online ahead of print June 29, 2009). For example, a study presented in 2008 found that adding cetuximab to other chemotherapies extended life by only 1.2 months at considerable cost: in the United States, 18 weeks of the drug cost $80,000, which translates to $800,000 for a single additional year of life for 1 patient. The researchers also point out that many studies that do demonstrate a small survival benefit do not take into account a patient’s quality of life.

The authors recommend several measures to reign (sic) in such unsustainable spending on drugs with minimal benefits, including limiting price based on survival benefit, more stringent requirements for toxicity, discouraging the use of such drugs in patients with advanced cancer, and approving or prescribing drugs only for the subset of patients for whom they have been demonstrated to be effective.

–Health Agencies Update, JAMA, August 26,2009 vol 302, No. 8 p.838

My mother died of ovarian cancer in 2000. It had recurred. Her CA-125 marker was rising again. She walked bent over, because her abdomon hurt. She was only taking ibuprofen. She said, “I can have more chemotherapy or go be in a clinical trial.”

I went with her to her cancer doctor. Dr. X is kind and sweet. She said, “We can start another round of chemo.” Dr. X was perfectly willing to answer questions, but only answered if they asked.

My mother said, “Ok.”

I said, “My mother keeps losing weight. Do you think that taking a stronger medicine than ibuprofen would help her gain some weight?”

This was pure hooey. Narcotics do not help people gain weight. My mother was losing weight because the cancer was so big that it was stealing all the nutrition.

But Dr. X understood. “Oh! We should give it a try. Here.” She wrote a prescription for percoset, thank goodness. “Now you try this instead.”

I followed Dr. X out of the room. “My mother thinks that she could be in a clinical trial.”

“No,” said Dr. X “The cancer is too advanced and she’s been through too many treatments. But, we will give her chemo for as long as she wants.”

We went home.

Think of the questions that neither my mother nor my father asked.

Will this prolong my survival?

How much will this prolong my survival?

How sick will it make me?

What does it cost?

If your mother was in my shoes, would you recommend taking this?

My parents didn’t ask and Dr. X did not answer anything that they didn’t ask. My mother did not want to know.

A week later, my mother said, “You know, that percoset is helping. I didn’t realize how much I was really hurting.”

She was walking more easily, though still bent over.

Within a few months she was admitted to the hospital with her intestines entirely blocked by cancer. We took her home, hospice for 5 1/2 weeks, before she died.

We are afraid to talk about death, about cost, about whether a treatment is worth it.

I ran into the son of a woman who died last year.

“You know that you helped me more than anyone, with what you said.”

“What did I say?” I say a lot of things.

“I told you that my mother was back in the hospital and that she’d pulled through another pneumonia. You said, I’m glad and then, someday she won’t. I was shocked and then I thought, it’s true, some day she won’t. I went home and I changed what I was doing. We took time with the relatives and they came to visit and it was a very special time. She died about a year later.”

“Thank you for telling me. I’m glad that it helped.”

“Thank you.”

Originally posted on Everything2.

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Evidence Based Listening

I approve of evidence based medicine, but with one caveat. Evidence based medicine seems to forget that half of the job in primary care is listening.

I do think we should do research and clinical trials and studies where the people gathering the information are not biased by knowing who is getting which treatment and studies that are statistically large enough to have mathematical meaning.

However, NNT bothers me.

NNT is the Number Needed to Treat. For example, a treatment for bacterial ear infections for children goes through a clinical trial. In a large, radomized, double blinded clinical trial, the new treatment does better than the previous treatment. A little better. The Number Needed to Treat is 5 instead of 6 and this is statistically significant.

And what does that mean? That means that if 5 patients are treated with the new treatment course, one will get better more quickly or respond better.

My thought is always “What about the other four?” They are taking a medicine that is not better than the other medicine, may be more expensive, may not help. Why do we have to treat 5 people to make a difference to one?

Medicine is not exact. Diagnosis, treatment, course expected, side effects, response failure.

The hospital clinic where I worked for 9.5 years bought an electronic medical record in 2005, an EMR. It was purported to make us faster, more efficient, paperless, cutting edge and we could use templates! And build our own!

I hated it.

I particularly hated the templates. The template was a list of questions for a particular problem, such as ear pain. The computer listed the questions, I could ask the patient the question, check the little box and the computer would generate a narrative from the check.

The computer sentences were so dry, awful and boring that they were nearly unreadable. Each was the same. “The patient says that the quality of the ear pain was sharp. The patient says that the duration of the pain was 3 days. The patient says…”

One woman came in with ear pain. She said that the pain felt “like someone is kicking me over and over in the ear with the pointed toe of a cowboy boot.” That definitely got my attention. It was not on the list of computer choices. I stopped typing and looked at her ear immediately and called the Ear Nose and Throat specialist, who saw her that day.

Then I emailed our head computer geek doctor and suggested that they add that to the list of choices under “quality of pain” in the ear pain template. “feels like someone is kicking me over and over….” He said no.

The computer doctors and hospital told me that I could write my own templates. I said, “I have a template: Why are you here? After that, every patient is different.”

I said that if they wanted the computer to ask the questions, why was I in the room? Let the computer see the patient. There is a program where people can log on, fill out a template, email it to the doctor who then either treats, never seeing the person, or says, “No. Come in.” The person is charged if he treats them without seeing them, but no charge for reviewing the template if they are seen.

I do use the templates to make sure that I fill out the six things that the biller/coders are looking for. Once I was told that my note was down-coded for an 89 year old on a consult I’d done in the hospital. “You did not identify the quality or intensity of the pain.”

“Um,” I said, “Her hip was broken and she couldn’t walk. Are you telling me that I have to say hurts like shit and she can’t walk and 10/10 pain if she tries?”

“Yes,” said the coder primly.

Well, it’s stupid, but if I have to do it to take care of my medicare patients, whatever.

The forgotten piece in evidence based medicine and our current climate is listening. In medical school and residency we were told that half of primary care, family practice and internal medicine, is psychiatry. How can that be? My shcedule says back pain, hypertension, hospital followup, needs antidepressant, sinus infection, as the complaints that people are coming in for. I rarely see colds.

But the schedule doesn’t tell the whole story. I see someone for their fourth cold of the year. They didn’t come in for the other three. Why this one? They aren’t even surprised when I say that it is a virus and they don’t need an antibiotic.

Then they tell me that their daughter is back on methamphetamines and they are taking care of the grandchild.

And that is the real reason they are there. To tell me. To tell someone in a safe confidential place.

If I stuck to the upper respiratory template, I wouldn’t hear that. If I stuck to the template, they wouldn’t feel heard. If I stuck to the template, they wouldn’t get what they really need.

My ear.

With the economic downturn, there were more visits for anxiety or depression or “wonders if needs depression medicine.”

We talk and then sometimes a person starts crying and says that they’re losing their house, or they’ve lost their job, or they have to move.

I don’t have a pill for that.

More often than not, they decide not to go on a medicine.

They needed my shoulder and a place to weep.

I hope that Congress remembers that sometimes the most important job of a doctor is to listen. We need time to listen. There is nothing that can replace it.

Originally posted on Everything2.

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Mad as Hell Doctors

I am hitting the road September 8, 2009 with the Mad as Hell Doctors to fight for a single payer system. This is a roadtrip that will end on October 1, 2009 with a demonstration for a single payer on the White House lawn.

My “bio” for the program:

I am a Family Practitioner and chose rural medicine. I care for all ages, including pregnancy and delivering babies, for the 13 years since I finished residency and for the last 10 years in Port Townsend, Washington, population 9000. There has been steadily increasing pressure to “produce” with less time for patients, a minimum quota, templates that impede listening and pressure to see patients for “one thing per visit”. I chose family practice because I wanted to care for the whole patient, in the context of their family and their community. In May, the rural community hospital and I parted ways, because the direction of their guidelines felt unethical to me. I will be opening my own practice, but without the county hospital subsidizing me, I will no longer deliver babies nor take the state insurance. My mission is to treat all comers from my community, my patients ranged from newborns to pregnant mothers up to a 104 year old. I want a single payer system so that I can care for anyone in my community.

I will be on the Seattle to Denver leg, with nine town forums in 7 days. As follows:

9/08 Seattle, WA

9/09 Spokane, WA

9/09 Kennewick, WA

9/10 Helena, MT

9/11 Idaho Falls, ID

9/11 Pocatello, ID

9/12 Salt Lake City, UT

9/13 Fort Collins, CO

9/14 Denver, CO

The group is arranging places to stay, but I would be happy to hear from any noders along the way. I might not be coherent, since I haven’t actually met the others yet and I’m fairly introverted. But this is in line with everything I’ve been fighting with my ex-administrators about and I happen to not have opened my private practice yet.

How did I get on board? A friend sent an email to me and one of the madashelldoctors and said, “They need a woman and you should be it.” We started talking and things just happen sometimes. Another woman doctor will be joining them from Denver to Washington, DC. It is hard enough on the introverted thinker to leave her for a week on the first day of school, but three weeks doesn’t feel right.

I have been running around, boning up on all of the proposals and single payer, reading every website I can find, getting a picture and updating my CV and writing the “bio” above and so forth. And making arrangements for the introverted thinker oh, an I need to get the plane ticket back from Denver. I will miss the first rehearsal for the Mozart Requiem and I’ll miss the Wooden Boat Festival (http://woodenboat.org/festival/). Sacrifices must be made and nothing is perfect.

Normally I would be so busy in clinic and as a single mom that I would hardly be following all this. It is a confluence of forces. I am still surprised.

Originally published on Everything2.

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Death Panel

I am amazed over and over by the term “Death Panel”. I was at a cabin for two weeks with no electricity, newspaper, television or radio and I return to cries of “Death Panel” which seems to be a name for visits to a primary care doctor to discuss end of life issues.
I spoke at a church this summer: the title was “End of Life Issues: Death, Dying and Dementia”. I specialize in Family Practice; I have delivered babies for 18 years and my oldest patient is 104. I love to work with families in life’s transitions: birth, illness, family planning and yes, death.
Everyone dies. Everyone is born. We have prenatal care. Our nation is in continuous discussion about birth: how to make it safe and a welcome and we talk about bonding and reducing premature births. We try to make the gestation healthy; we take vitamins and exercise and see our doctors regularly.
Why don’t we do the same for death?
There is some effort. Hospice is care for the end of life, but to be in hospice, a doctor must say that a person would reasonably be expected to die within six months. Honestly, doctors are not very well trained in this. The truth is that we tend to refer people to hospice within days or a few weeks of death. I was not  well trained in approaching the subject of hospice. Some patients see this as a death sentence: the doctor is saying that I WILL die within six months. I now approach it as a challenge for them. “I could refer you to hospice now, because you might die within six months. They will pay for your medicines and you actually do not HAVE to die within six months. If you live for two years once you are referred, they may fire you from hospice.” Yes, I have had people who were in hospice and came back out. More than one. And I referred one woman because her cardiologist had said her cancer would kill her and her cancer doctor had said that her heart would kill her and she’d already outlived both their predictions and was complaining about an expensive medicine. I said that since they both had told me she’d be dead over a year ago, I was certainly able to refer her to hospice. She thought about it, accepted and then beat the six months. I miss her.
I like to discuss end of life issues. It is not easy, but I would much rather have a difficult discussion than the alternative.
A friend brought her mother, in her upper 80s, to see me in clinic. Her mother was already well past the age when she was likely to die of a sudden heart attack. I started talking about strokes and that it takes 2-3 days for the swelling in the brain to go down. We support people and wait to see if they will be able to swallow. If a person does not recover the ability to swallow, I was explaining why they would die.
“I don’t want to think about this.” she said firmly.
“Well,” I said, “You don’t have to. BUT, if you do not tell us what you want, you might not be able to talk or communicate. If you can’t communicate, your daughter and I will have to make the decisions, and we will err on the side of doing things, treating, rather than not treating. So it is your decision.”
She thought about it. “All right. I am willing to talk about it.”
She did talk about it and she listened to the information about strokes, heart attacks, and told us that if she were sick she would rather stay in Port Townsend. She did not want to be transferred to a big Seattle hospital in the event of a big heart attack or stroke. She wanted to stay in our small hospital, near her family, and use the more limited resources here. She seemed to understand what these were and what we could and couldn’t do. Sometimes transfer to a bigger hospital can slow death, but sometimes it is only by hours or days.
She did have a stroke, some months later. She was able to communicate and her swallowing was affected. She indicated clearly that she wanted to go home. She went home and had her children, grandchildren and a great grandchild present to say goodbye. Her family was very sad but also were prepared, I think, and able to care for her at home. I visited the day before she died. It  made me think of a Norman Rockwell painting, with the great grandchild playing happily in the room with a big bed and the family gathered around.
Every person’s response to the end of life is personal, no two are alike. My job as a family physician includes notifying people when I think the end is nearing; asking for their preferences and trying to help the dying person and their family through this sacred transition as best I can.
If that is what a “Death Panel” is, then I have already been on one.
Originally posted on Everyhing2.