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Mad as Hell Doctors in California: October 5, 2010

October 5, 2010

Today I rejoined the Mad as Hell Doctors (http://madashelldoctors.com/) on the road trip, this time in California. This day was a mix of planes, trains, cars, single payer health care, social justice and neoprene.

The Mad as Hell Doctors have been two weeks on the road in California, doing town halls for single payer. Some doctors are there for the entire trip, some have come for a week at a time, many local chapters of Physicians for a National Health Program (PNHP http://www.pnhp.org/) have local speakers and local providers join us at the events. Each event is different, with a mix of our team and the local team. One more week to go, ending in Chico, California on October 12th. I am leaving my practice and my children for one week, the last week of the trip.

The previous trip was from Portland, OR to Washington DC, 26 cities and more than 30 town halls, a road trip across the United States. I joined the Mad as Hell Doctors in Seattle and participated for a week. I flew home from Colorado and then rejoined them for the last 5 days, ending in a rally across the street from the White House.

Up at 3 am and quick finishing my packing, left at 3:40 after kissing the kids. Drove from home to Sea Tac, about two hours, down through Bremerton and across the Tacoma Narrows Bridge as the sky is starting to lighten and then north on I5. I5 luckily not busy and not backed up. Left the car with some company on International Boulevard and rode the van to the airport. At the scanner after I checked one bag, security found a jackknife in my carry on. Rats. I did not have time to go back around and mail it home. I wonder what really happens to all the confiscated knives. On to the gate and the flight was boarding. Nice flight down to San Diego. We left at 6:50 am and arrived at around 9 am. I felt disoriented as soon as I stepped outside: the sun was too high in the sky and those palm trees are just wrong. The air is so dry after the Pacific Northwest.

I checked on a van to go meet my Mad as Hell Doctor compatriots, but it would cost $170. “No? How about $150? How much can you afford?” The 3 pm train was $17.00 so I waited for that. I checked my bag at the train station and wandered around San Diego for a while, had breakfast.

At 3:00, the train moved out. San Clemente Pier was the third stop. The disembodied train speaker said “You should be going down the stairs and be ready at the doors: this is a very short stop.” I was ready and the only one to get off. I rolled my bag along as the train pulled away. No one was there. Then I heard my name and from the ocean side a man was running, sort of, in a black shortie wetsuit with one yellow flipper in his hand and the other on his right foot. I must be insane, I thought, and got a very wet oceany neoprene hug from Dr. Mike Huntington.

I changed into my swimsuit and joined Drs. Huntington and Sapir (http://madashelldoctors.com/2010/10/05/california-road-trip-day-14-san-clemente/) in the ocean, my suitcase tucked up on the lifeguard tower. No lifeguard. The water was at a crisp 68, which is better than the usual Pacific Northwest 56 degrees. I bodysurfed for half an hour until I couldn’t feel my toes and my hands were turning bloodless and white. Changed back into clothes and we played frisbee on the beach, me with enthusiasm but little skill. Mark Sapir said, “First chance to exercise in two weeks. I went running today and now everything hurts, so now we’re letting waves pound us in to the sand.”

We trooped back to the houses where they were staying and I met our hosts. Dinner with 14 people, kind and gracious hosts. Much discussion of medicine and politics. This was a day off for most of the [What I learned from my first Mad as Hell Doctors week|Mad as Hell Doctors], though Dr. Paul Hochfeld was at a talk given by a Physicians for A National Health Program California Chapter Fellow to medical students. He was back for dinner, reporting on the event.

This trip is streamlined. Currently there are eight of us. The trip is still 3 weeks, but with a little recovery time built in. Instead of staying in motels, we have stays arranged with PNHP members along the way. Phillip Kauffman is with us, saying that this trip is both easier and harder than the one last year. We have less paid support crew so more duties have fallen on him, but it is also a smaller group of people to coordinate. Dr. Hochfeld called him a “butterfly herder” in his blog yesterday, but I still think we’re more like cats. I don’t think of butterflies as having the same sort of egos or defense weapons as cats. And I am delighted to return to the group. They are incredibly dedicated and stubborn and willing to go on fighting for single payer. They, or we, are ignoring the people that say, “Why work on this? The health care bill passed. You won’t get another for years and years.” They might be right: but social change and social justice is not attained by sitting back, being apathetic or giving up. It takes dedicated people continuing stubborn work. I feel closer to these people after less than two weeks last year then some physicians that I have worked with for ten years: to be back on the road with the Mad as Hell Doctors is like coming home.

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Alcohol

Let’s talk about alcohol.

I am a family practice physician and I talk to people of all ages about alcohol. The current recommendation is no more than one drink daily for women and two drinks daily for men, no saving it up for the weekend.

“What?” you say “No way. Come on, that’s ridiculous.”

My patients don’t say “That’s ridiculous.” After all, they are paying me to do a physical exam and a preventative exam. I am supposed to give them advice. But what is the basis for that?

One drink is defined as a regulation 12 oz beer or 6 ounces of wine or one ounce of hard liquor. If it is a high alcohol beer or wine, the amount is less.

It is NOT the liver doctors that have given us these numbers. It is the cardiologists, the heart doctors. One drink in women or two in men, lowers blood pressure and in general, has good effects. Go over that daily and there is a rebound in blood pressure as the alcohol wears off. Alcohol works in the same way as benzodiazepines: it makes people less anxious and more relaxed and lowers inhibitions. Both alcohol and benzodiazepines are addictive in the long term.

Cardiologists qualify this recommendation as follows: there is no recommended daily amount of alcohol that is considered heart protective because there are too many alcoholics. The recommended daily amount of alcohol for an alcoholic is none. The recommended daily amount of alcohol for the general population is none.

Alcohol withdrawal can be very very dangerous medically. I think that the three most difficult things to quit are heroin, methamphetamines and cigarettes, but alcohol is more dangerous. In heroin withdrawal all of the pain receptors fire at once, so it is torture, but people don’t die. With serious alcohol withdrawal, the blood pressure skyrockets and the person can have seizures, a stroke, a heart attack, delerium tremens and can die. In the hospital, benzodiazepines are used to slow the withdrawal, replacing alcohol in a controlled manner.

Alcohol does more than affect the blood pressure. Over time, alcohol can damage the heart and lead to congestive heart failure. Of course, you know that it can damage the liver and lead to cirrhosis. Cirrhosis is sneaky: as long as there are a few functioning liver cells, the lab work can look pretty normal. The liver makes proteins for the blood and makes proteins that allow our blood to clot. Once there aren’t enough healthy cells to make those proteins, alcoholics will bleed quite spectacularly. If the amount of the protein albumin in their blood is low, fluid leaks from the blood into the tissues: so whatever part is “dependent”, that is, lowest, will be swollen. Alcoholics can have legs with swelling where I can push with my finger and there is a two or three cm dimple. Alcohol also can lead to gastritis and ulcers. If someone can’t clot and they are vomiting blood from an ulcer, the doctor gets a tummyache too, from worrying. Ow. The liver is also supposed to filter all of the blood in the body. As the liver gets blocked with dead liver cells, the blood starts to bypass it. The bypass is through blood vessels in the stomach. Remember that person vomiting blood? The swollen vessels in the stomach are called varicies and we don’t like them to bleed. They are big, swollen and can bleed really really fast. The person can die. I don’t like transfusing and really don’t like transfusing 12 units of blood. In end stage alcoholism, the liver no longer lowers the blood level of ammonia. Ammonia crosses the blood brain barrier and poisons the brain. We haven’t even discussed the lack of vitamin B12 and thiamine which can cause unraveling of the myelin sheaths on the long fibers in the spinal cord: this means that the person gets permanent asterixis and “walks like a drunk” even when they are sober. I’m sure I haven’t remembered all of the consequences of alcohol, but that will do for now, right?

How much alcohol daily causes the above charming picture? We Don’t Know. Really. And it is not okay to do randomized double blinded clinical trials to find out. Same with pregnant women: we don’t know if there is a safe amount of alcohol during pregnancy and we bloody well can’t test it. It is safer not to drink while you are pregnant.

In clinic, I ask how much people drink. If they say 1-2 drinks daily, I ask what the drink is. Sometimes they look confused. I explain that I have one patient who has two drinks a day: however, it is a 12 ounce glass with a little ice and a lot of whiskey. I asked him to estimate how much whiskey and he said, “6-8 ounces.” That is, each glass is 6-8 ounces. His blood pressure is not under control and so far I feel like a failure as a doctor with him; he is NOT reducing the amount. In medical school, the two jokes were: How much alcohol is too much? More than your doctor drinks. And: How much does the patient drink? Double or triple what they tell us.

The popular word in college used to be that you could drink one drink an hour and still be “okay”. “Okay” to drive and it would wear off. Sorry, nope. Breathalyzers are now pretty cheap; buy one if you are drinking more than the 1-2 per day. And the college students that are binge drinking 6-8 or more drinks on Friday and Saturday. It DOES have long term effects and it IS doing damage.

Lastly, sleep and depression. If you are having trouble sleeping, don’t drink. No alcohol at all. Alcohol is a depressant. It helps people to fall asleep. But they do not have “normal sleep architecture” and it works AGAINST them staying asleep. People often wake up as the alcohol wears off. And the blood pressure is having that rebound, remember, and often their heart will race. That is withdrawal. If you are having trouble sleeping or you are depressed, do not take a depressant. It makes it worse.

I saw a nineteen year old in clinic who admitted to “occasional” heroin use. “But I’m not addicted,” she said. I said, “Well, that’s good. But I took care of a bunch of people undergoing heroin withdrawal while I was in residency and it looked like one of the most painful things on the planet. So I would advise you to quit while you are ahead.” I saw her a year later and she said, “When I tried to quit, it WAS hard. I was addicted and didn’t know it. I’m off now and I won’t go back.” So if you tell me, no problem, I can quit alcohol any time, I say more power to you. Show me. And if it’s harder than you think, get help.

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Old men never die, they just spout poetry

When I was in residency we rotated through the Veterans Hospital in Portland. Most of our patients were either very elderly or they were alcoholics or addicts in their 50s, starting to really go downhill medically.

One elderly patient is particularly vivid in my memory. He was in his 80s and black. He was weak and had various problems. I was not doing a very good job of sorting him out.

He wouldn’t answer questions. Or rather, he would give a reply, but it was not yes or no and I couldn’t figure out how the answer related to the question.

On the third day he gave a long reply to a question and I recognized it.

“That’s Longfellow,” I said. He nearly smiled. “We did a bike trip around Nova Scotia and read Evangeline aloud in the tents at night. The mosquitos tried to eat us alive. That’s Longfellow, isn’t it?”

He wouldn’t answer but the twinkle in his eye indicated yes.

So our visits were cryptic but fun. I would try to guess the author. He knew acres of poetry, all stored in his brain, no effort. I tried to relate the poems to my questions to see if he was answering indirectly. I wondered if he had schizophrenia and these were answers, but I didn’t think so. I thought he was just stubborn and refusing to answer.

I challenged him. “Ok, you are the right age. Come up with a song with my first name that is from early in the century. My father used to sing it to me when I was little. Can you?”

The next day he sang to me: “K-k-k-katy, beautiful Katy, you’re the only beautiful girl that I adore. When the m-moon shines, over the cow shed, I’ll be waiting by the k-k-k-kitchen door.”

We sat and grinned at each other. Soon afterward I moved on to the next rotation. I don’t remember his medical problems. But I remember him and remember wondering what he had done in his life to have a memory and a store of poetry in his head. A teacher? A professor? A man who loved poetry? I started matching him with my own store of poems, the Walrus and the Carpenter, songs, bits and pieces.  I felt blessed and approved of when his eyes twinkled at me, when I recognized an author or even recognized the poem itself. I looked forward to seeing him on rounds, daily. And he seemed to look forward to my visits. I was sad when I had to say goodbye and the next rotation was out of town. And since he had never told us his name, no way to stay in touch. Farewell, poetry man, fare thee well.

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Mad as Hell: Good Insurance

My name is Katherine Temple Ottaway and I am a Mad as Hell Doctor!

I am a Family Practice physician. I live in a rural town of 9000 and I take care of people from birth to death. I have delivered babies for 18 years.

I am Mad as Hell because people are suffering and 30% of the money spent on health care goes to administration and profit, not to health care. 60% of bankruptcies in the United States are triggered by medical bills.

As we crossed the United States, doing town halls on single payer health care, I thought that we cared for our roads better than our fellow citizens. Rest stops and all.

My sister has “good” insurance, through the state of California. Four years ago, at age 41, she was diagnosed with stage IIIC breast cancer, advanced. Each year she pays a deductible of $500 and then a maximum copay of $3000 and then a maximum prescription copay of $1000 dollars. Last year she also paid a second deductible for her family, an additional maximum of 3000$ and the prescription copay for her family. Her cancer recurred in October of 2008 and the chemotherapy rolled over into January, so she is paying all of it again this year: at $4500 per year, that comes to $22,500 dollars over the last 4 years. And remember, she is lucky enough to have “good” insurance and she is lucky enough to have a boss who values her, so she hasn’t lost her job.

She was nauseated with her latest chemotherapy. Only one antinausea medicine worked. It was very expensive and the insurance refused to pay for it. She called them. They said, “95% of people on that chemotherapy have their nausea controlled with the other medicines.” “But I am in the other 5%,” she said. “We will not cover it,” they said. And they are lobbying Congress with $1,400,000 dollars a day. Where, exactly, do they get THAT money? My, they must have some really nice profits to protect.

My sister said to me sadly, “I wish I could save more for my daughter’s college.” Her daughter is 11. They rent and wish that they could buy a house. My sister said that she has nightmares about losing her job and them living on the streets.

And that is happening. People are making choices. They told us as we crossed the country. When a job is lost and the cobra insurance is $700 a month, it is often lost too. And then a cancer patient has to choose: treatment and my house will have to go to pay for it? Or do I preserve the house for my children and choose not to be treated? And possibly come to the emergency room at end stage, deathly ill, be treated with extraordinary measures in the emergency room and ICU. The house may still go.

I am Mad as Hell that we spend 16% of our GNP on health care, twice as much as the second most expensive system in the world, and yet are ranked 37th for over all health care. Our system causes deep suffering and horror for families. I am a Mad as Hell Doctor. Blessings on everyone that took Oct 15, 2009 to sit at health insurance companies. Peaceful social activism, to mourn the 45,000 Americans that now die prematurely from lack of medical care. Fight back.

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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.