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Tuesday, March 30, 2010

Donald Berwick as head of CMS

Pres. Obama has just nominated Dr. Donald Berwick to lead CMS, the Federal government agency that runs the Medicaid and Medicare programs. Don has stellar qualifications. Equally important are his experiences as an advocate during his father's period of declining health, and his own experiences as a patient with a botched knee operation. Years ago, at his speech to the Institute of Healthcare Improvement's National Forum, he movingly described his frustration and inability to get the proper treatment, and an appropriate wheelchair, for his father, himself a doctor. At the most recent December Forum, he described his definition and vision of his own health, and showed the large gulf separating that from the absence of illness, as doctors usually define good health in practice. He did this by encouraging people to ask, What do you really want? Then to ask again, What do you really, really want? And to ask a third time, which elicits the true vision of one's ideal health.

What do I really, really, really want? For the Senate to confirm my friend and colleague Don, and give him the keys.

Wednesday, March 24, 2010

Be brave anyway: Marcelas and Tiffany Owens and the Patient Protection and Affordable Care Act

Here's what I imagine the late Tiffany Owens would say today to her 11-year-old son Marcelas, who was beside Pres. Obama at the signing of the healthcare reform bill:

To my beautiful young man Marcelas,

I'm so proud of you! Thank you so much for being brave in speaking for me to all those important men and women. I wish I could be with you.

A lot of people have been yelling at you on TV and blogs. Try not to let that bother you. When you stand up for something you believe in like you've been doing, people on the other side can get mad, especially if you're effective. Maybe, like they say, I could have done things that might have prevented my health from getting so bad, but maybe not. I don't know enough about pulmonary hypertension to know. I'm not sure anyone does. And that misses the point, anyway. The point is that sick people should still be able to be taken care of by doctors and nurses, even if they lost their job, and don't have health insurance anymore. That's what you told all those people, and that's exactly what I wanted you to tell them.

People won't always listen to you as much as they did about this. But you should still speak your mind, with respect. And, of course, you may well never get to the White House again! Don't expect that you'll always be rewarded for being brave – but be brave anyway.

There are lots of people here with stories like mine – 45,000 every year, who died because they didn't have health insurance. You helped to speak for them, too. And you helped to save the lives of lots of people like them, from now on, because of the new law.

I miss you so much, Marcelas! Give a big hug to your Grandma, and do what she tells you.

Much love,

Your mother

Advice: Remember Tiffany Owens.

Read another story.

Friday, March 19, 2010

Meghan Morris, Rep. Stephen Lynch, Healthcare Reform, and History

Legislative assistants in Congress dream of the chance to make history. That moment arrives today for Meghan Morris in Rep. Stephen Lynch's office.

Congressman Lynch is one of the few Democrats to oppose national health reform. His vote could be the decisive one, given the closeness of the vote. Will he be known as the person who tipped the balance, giving health insurance coverage to 39 million people, and banishing the "pre-existing condition" exclusion from insurance policies? Or as the one who extinguished the financial security and hope for millions of working-class people for health insurance coverage, for many more years?

Meghan, you'll soon report the count of the letters the office received, and will advise Rep. Lynch on the optics as of next week, on November 2, and in ten years. Next week, the optics of a No vote could make him the butt of late-night talk show jokes, and make him look like a disloyal black sheep, a Democrat in name only, another Democrat who snatched defeat from the jaws of victory. On Nov. 2, it won't look like much of anything, either way, for Massachusetts voters will make their decisions on other grounds. In ten years, and from then on, he'll look foolish.

The optics of a Yes vote? Next week, he'll look like one of a crowd who helped make history. On Nov. 2, it won't matter either way. In ten years, we'll all think, "He and those other Dems actually accomplished something big. We're not going back. How could we have excluded so many working class and suffering people for so long?"

Your call, Meghan. Please rise to the moment.

Advice to voters: Tell your friends in the suburban Boston towns of Brockton, Braintree, Needham, and points between to contact Meghan at Meghan.Morris@mail.house.gov or by calling Rep. Lynch's office at 617-428-2000 or 202-225-8273.

Read a story about the one-year anniversary of universal health insurance in Massachusetts.

Thursday, March 18, 2010

Her uterus is intact: An alternative to hysterectomy

Shelly is an Iowa native and a 42-year-old mother of two daughters. She trained to be a schoolteacher and later worked as a pharmaceutical representative. She is savvy and understands the business of health care. Her Ob-Gyn in a three-physician office practice in her hometown diagnosed uterine fibroids. The doctor told her that her only option was a laparoscopic hysterectomy.

Shelly describes what happened next. "I didn't want a hysterectomy, so I asked about less invasive methods that would leave my uterus intact and get rid of the fibroids. The doctor made fun of me, repeating 'less invasive methods' mockingly. Then she said, 'When that fibroid grows up over your belly button, you'll come running back!' I asked her whether my ovaries and cervix would remain, and she said, 'Well, I guess we could leave them." Shelly was indignant that anyone would remove perfectly healthy organs. She thought to herself, "my ovaries and cervix are perfectly fine!"

Not satisfied, Shelly saw another doctor in the practice who came to the same conclusion. Laparoscopic hysterectomy. So did the third doctor in the same practice.

"I wanted them to know that I'm not the average cabbage that fell out of the truck, so I asked for a copy of my medical records and the ultrasound so I could search for less drastic alternatives. They said, 'We only give records to our obstetric patients.' I was floored." Shelly knows that patients have a right to a copy of their medical records. When she called her insurance company to find out how the doctor's office could withhold her medical records, the company representative put her in touch with the state medical licensing board, which gives doctors their licenses to practice medicine. Shelly spoke to a representative of the licensing board. "I don't know what this person did," she says, "but within a day I had my records."

In the records she saw that the second doctor had written that she spent 45 minutes discussing treatment alternatives to laparoscopic hysterectomy. "That was a lie," Shelly says. "She spent 10 to 15 minutes with me and didn't tell me about my options. That's because it would be money out of their pocket if I chose an alternative treatment that these doctors didn't do. All they did was laparoscopic hysterectomies, so that's what they recommended. I think it's a conflict of interest for them to steer people toward certain procedures because that's what they know and that's how they make money."

Shelly thoroughly researched treatment options and found a less drastic alternative that she believed was best for her. Her uterus is intact, and she is pleased with the results. "It's not enough for patients to know treatment options and their risks and benefits," she says. "You have to understand the business of health care." Because Shelly had worked in health care, she understood that she was led down a treatment path that might be good for the doctor's business but not for her. When asked what happens to people who don't have the skills she has, she quips, "They will have everything ripped out."

Advice: Be aware of physicians' financial incentives.

Read a story about unnecessary treatment. Thanks to Rosemary Gibson for this story, reprinted from her excellent new book, co-authored with Janardan Prasad Singh: The Treatment Trap: how the overuse of medical care is wrecking your health and what you can do to prevent it.

Monday, March 15, 2010

Wracked with worry: Loss of insurance for a cancer patient

Natoma Canfield is a 50-year-old cancer survivor, a cleaning lady from Medina, Ohio. She had written the White House in late December about her inability to afford insurance.

 Natoma's premiums had risen 25% in 2009. She had paid $6,700 in premiums in 2009, and more in copayments, and yet received less than $1,000 in insurance benefits. In light of that, and the likely rise of 40% in her premiums in 2010, she had dropped her policy.

White House officials had reached out to her last week and asked her to introduce Pres. Obama to the stage at a speech today promoting health reform. But days after the White House made the offer for the introductory slot, Natoma collapsed. Taken to an emergency room for tests, she was diagnosed with leukemia, and hospitalized.
"The reason Natoma is not here today is that she's lying in a hospital bed, suddenly faced with this emergency - suddenly thrust into a fight for her life. She expects to face a month or more of aggressive chemotherapy. And she is wracked with worry not only about her illness but about the cost of the tests and treatments she will surely need to beat it," Obama declared.

Advice: Consider if the same thing could happen to a friend with cancer, as you make up your mind on health insurance reform.

Read a story about a loss of insurance. Thanks to David Herszenhorn for the source story in today's New York Times, and Sam Stein in today's Huffington Post.

Saturday, March 13, 2010

I had no idea I had a pre-existing condition: Insurance denials

Jill's question [from January 2008]:
Hi, I was recently laid off from my job last October 2007 and I had insurance with B--- from June 1st until Dec. 1st. I landed a new job right away and started [insurance coverage] with Anthem on Dec. 1st.

All of a sudden I was receiving all of these bills from my doctors stating I owe $6,321 and another $375 for services I was covered on June - August of 2007. B--- states it was a pre-existing condition and they refuse to pay. I had no idea I had a pre existing condition. I have had skin cancer in various areas [where] I have had surgery claiming basil cell, melanoma for the last 2 years. I have never paid anything. B--- is stating since I came aboard to their policy having this "PRE-EXISTING CONDITION" and only being with them for a period of 6 months that they are not obligated to pay. I have never heard of this and had the highest insurance plan under my company, which filed Chapter 11 [bankruptcy proceedings] last fall. I also, when signing up for this insurance plan, never listed anything on paper what I have had done in the past. I just picked the plan so I had no idea I had to be with an insurance provider for a certain length of time or that having skin cancer in different spots of my body was pre-existing. It's not my fault I am in the telecom industry and get laid off all of the time and have to change insurance providers.

If I had known my bills were going to be over $7,000 and I had to stay with B--- for another year and pay more I would have.

Am I really responsible to pay this before Collections is after me?

Jill's conundrum is all too common. Google identifies 3,310,000 stories online with the phrase "I had a pre-existing condition."

Advice: Obamacare would make pre-existing conditions and these sad stories a thing of the past. Tell your Congressman to support it.

Read another pre-existing condition story. The source was the AllExperts website.

Thursday, March 11, 2010

If you would have come earlier: A cancer misdiagnosis

National patient safety expert Dr. Peter Pronovost describes what got him started on his crusade:

My father died at age 50 of cancer. He had lymphoma. But he was diagnosed with leukemia. When I was a first-year medical student, I took him to one of our experts for a second opinion. The specialist said, "If you would have come earlier, you would have been eligible for a bone marrow transplant, but the cancer is too advanced now." The word "error" was never spoken. But it was crystal clear. I was devastated. I was angry at the clinicians and myself. I kept thinking, "Medicine has to do better than this."

Advice: Get a second opinion promptly upon receiving a crucial diagnosis.

Read a very different story about the need for a second opinion. Thanks to Claudia Dreifus for the source interview in the New York Times of March 9.

Wednesday, March 10, 2010

I insisted that a doctor see her again: The effects of dehydration

Myra Fournier's story:

My mom went through a rather "interesting" few days.

She was in the hospital overnight on Thursday for transient ischemic attack (TIA) symptoms, discharged on Friday, and doing VERY well Saturday morning.

At 4:00 on Sat, Guy called me to say that he and the aide can't really rouse her. They were all set to go out after lunch, and then just got weak, couldn't walk, and had to be carried to bed. The nurse checked her out and vitals were fine. She slept all afternoon, but by 4:00 they got more concerned. By the time I got over there around 5 pm, she had a severe headache, slurred speech, and a weak left side.

We called an ambulance and when she got to the ER, I suggested they start an IV of fluids. They disagreed. Instead they did a CAT scan and an EKG. Both normal. They gave her a Tylenol for her headache, which did nothing. By 10 pm she was screaming in pain, confused, and agitated and they gave her a shot of morphine. By the time the needle left her arm, she was sound asleep and peaceful. She was admitted to a room after midnight and had a pretty good sleep. I once again suggested an IV of fluids, but the nurse did not think that mom was dehydrated.

On Sunday they did an MRA (as opposed to an MRI) and an EEG (I think) and both were negative for stroke and seizure. They did labs and ruled out infection. They decided to cut back on her blood pressure meds because her blood pressure was also low.

I went home on Sunday around noon while Guy stayed for the afternoon and we had a private aide for overnight. On Monday morning, the aide reported that mom had a terrible night, did not sleep, and the headache was back. When I got there around 10:30, her speech was slurred and she was listing over to the left. A hospitalist came and decided to order an IV of fluids. I waited with her all afternoon, and she fell sound asleep - so deeply that once again she could not be roused: not by yelling at her, rubbing her arm, or pounding on her chest. However, the IV never came and the nurses and PT just thought she was having a "sleepy" day. Ridiculous.

By 5:00 pm I INSISTED that a doctor see her again and that the IV be started immediately. They started the drip at 5:30 and at 5:40 her eyes fluttered open and she started to revive. They ran the drip all night long - I slept over again - and by this morning she was bright, perky, and not (TOO) confused. Speech and strength on both sides were normal. Headache gone. She walked with her walker and held court with the various staff members!

I took her home at 2:30 and when I left at 4:00, she was busy making dinner plans with friends for THIS EVENING and trying to decide on what kind of little celebration she should have for her upcoming birthday. I asked her if she wanted to nap and she was not a bit sleepy.

I was REALLY stunned that dehydration (plus, low blood pressure probably) could cause these kind of severe complications. I hope she was frightened enough to keep to a healthy eating and drinking regimen. I instituted around-the-clock care again until at least the weekend to get her back on her feet (literally).

Advice to patient advocates:
Stay on guard about the indirect effects of dehydration on elderly patients.

Read another story about dehydration. Thanks to patient advocate Myra Fournier for the story.

Monday, March 8, 2010

Not like finding a plumber: e-therapists through Liquic

John Khoury's story:
Vera was a middle-aged mother in Holland, with an alcohol problem. Things got to a point where she needed to see someone. Here in Holland, you first see a General Practitioner, and then they send you to a specialist. She'd seen a couple of psychiatrists, but didn't have good experiences with them, and never really got to the question of why she was drinking. Instead, they'd said she just had to stop, in order to have therapy.

That wasn't going to work. It wasn't the right match; it wasn't a good therapist for her.

She found a website of a community forum of people with alcohol problems. In that kind of forum, things can open up a bit. She reached out to an Internet therapist who was specializing in the treatment of alcohol abuse. That clicked very quickly with her; it was a very different experience.

She appreciated the online contact with him. He gave her tips, and homework. He didn’t insist on abstinence right away. She appreciated that. He would teach her to postpone her drinking. For example, he'd say, Take the dog out for a walk, and then see how you feel 20 minutes later.

She hasn't completely stopped drinking, but it's not a problem for her anymore.

Vera preferred that to face-to-face therapy because of lack of time constraints. In face to face therapy, you get off on a tangent and then time runs out, and you never get to what you really had in your head to talk about, that you sort of lost track of in the moment.

With e-therapy and emails, if a thought is in her head, she writes it down and sends it off to a therapist.

She said "it saved my life," that it has been the thing that made a real difference in her life. Things are smoother with her family, and she has started painting. A positive effect in your life affects the people around you: her husband has stopped drinking so much. There's no going back. It's like in mental health in general: once you feel good, with your head straight on your shoulders, you know how that feels. Then you can repeat that same feeling of mental health.

Since then, Vera wrote a book under a pseudonym in community with these other people. People get friends for life, like in Vietnam Veterans groups. They meet occasionally face to face with each other, and with the therapist. That's a big step.

John’s Advice:
To make the best use of e-therapy, just get started. Everybody's experience is a little bit different. Finding a good therapist is the first step. My website, Liquic, is designed to do that, to provide the best access for people, and allow room for the best choice. You can't just go to the Yellow Pages, like you would for a plumber. You might have to go through a couple of therapists first to get a really good match. At the end of the day it has to fit your profile. A good fit for one person isn't a good fit for another person; that's the conundrum. The key is to find someone who matches up with your needs.

Read another alcohol treatment story. Thanks to John Khoury for the recent interview.

Sunday, March 7, 2010

When you most need it: Anthem Blue Cross' denial for Ephram Nehme's liver transplant

Readers, I almost never use the name of providers and other organizations that are involved in outrageous decisions or errors. This case deserves to be an exception.

Anthem Blue Cross is a large insurer in California, part of the Wellpoint company. Anthem’s parent, Wellpoint, declared profits of $4.5 billion in the most recent quarter. A few weeks later, Anthem Blue Cross decided to raise its rates for members in California by 39%. A year earlier, Anthem's staff had denied an expensive life-saving liver transplant to Ephram Nehme.

Ephram had emigrated to the U.S. from Lebanon, moving to New York City after high school. There, he paid his way through accounting school by pumping gas and selling umbrellas. He yearned to start his own business. Twenty years after working for other people, he did so, opening a produce market in southern California, and then another one.

Following a blood transfusion in the 1970s, he had gotten hepatitis. He was able to manage the condition for many years with medication. But by late 2006, his doctor, a liver disease specialist at UCLA, told him it was time for a liver transplant.

Given the quirky rules for liver donation, the relatively small number of liver donors in California, and the urgency of his need, Ephram's doctors told him to promptly seek a transplant out of state. To Anthem Blue Cross, that meant "out of network," and they denied his request.

Ephram got a lawyer, who filed a lawsuit in Los Angeles Superior Court.

The denial stated that his score on a liver disease scale (the MELD – Model for End-Stage Liver Disease) was in a gray zone that did not necessarily justify a transplant. Ephram's lawsuit includes a copy of the letter from a doctor confirming that the MELD score was not in the gray zone, but rather was at a level indicating a prompt liver transplant was clearly required. In other words, the letter proved that Anthem had been incorrect. When learning of their error, staff at Anthem then changed their justification for the denial, saying that Ephram's "noncompliance," and inadequate medical therapy by the UCLA Transplant Center, had caused his situation, so that they need not pay for the very expensive procedure.

By 2006, Ephram was too sick to fight, so his wife called and begged Anthem to reconsider their denial. While the appeal was pending, Ephram's doctor convinced him that waiting too long could be disastrous. Anthem again formally refused to pay for the life-saving transplant.

Luckily, Ephram had enough money to move to Indiana and spent $200,000 of his savings for a hospital there, where he received a successful liver transplant in January 2007.

"If I hadn't," he said, "I'd be gone."

We don't give insurance companies many thousands of dollars a year of our money out of charity, or because we want to support their executives' lavish lifestyles. The only reason why people spend many thousands of dollars a year in health insurance is so that, if they become desperately ill, even a very expensive procedure will be paid for and provided. When an insurance company takes our premiums and realizes a huge profit, and jacks up their premiums so they will make even more in the future, and denies the life-saving procedures whose payment is the only thing that justifies their existence, something is deeply wrong with the status quo.

Advice: If you like our health insurance system to operate like this, do nothing to support healthcare reform, and it will act exactly like this when you most need it.

Read another story about an insurer’s denial for life-saving treatment. Thanks to Lisa Girion for writing the online Los Angeles Times story of October 7, which provided certain background details.

Friday, March 5, 2010

My father, my hero: Paul Farbstein

Today is the third anniversary of the death of my father, my hero, Paul Farbstein.

He waged a long fight with Parkinson's Disease, without complaining. Even this disabling and humbling disease did not pierce his characteristic calmness.

With my mother's help, he did daily stretching exercises. To keep some muscle tone, he used a Theracycle, a self-propelling exercise bicycle, which greatly delayed his need for a wheelchair.

Long before Parkinson's, he had written a living will to express his wishes, and opted against heroic measures. We brought him to a hospice in the final days, at my urging. At that point, the only thing I could give my father was a good death.

Advice: Live like Paul Farbstein.

Read another story about hospice care.

Thursday, March 4, 2010

But neglect their own American neighbors: Universal health care in Thailand

James Cameron Mielke's story:
I was disappointed, but not surprised, when I read the story about the couple that were obviously confident enough to be holidaying in Indonesia, but when the guy broke his ankle, they freaked out and high-tailed it all the way back to the USA - taking that long, expensive and arduous journey just to fix his broken ankle. Apparently they were not aware of the world-class health care available in nearby countries like Singapore, and in Bangkok and Hong Kong, to name a few. They would have been amazed at the stellar care available had they simply hopped over to Singapore - and while cheaper than in the USA, their insurance should have covered it anyway.

I can't tell you how depressed I get when I hear the news each day - and I'm sure most people around the world have been rolling their eyes in dismay over the pitiful health care debate in the USA. It is simply appalling that Americans don't have a universal health care system of some sort. As you know, we are the only developed nation in the world that doesn't have this - but people have been fed so much misinformation, and have been so frightened - and of course, too many of the politicians have been bought out by big business that likes the status quo. If we could only extricate ourselves from fighting so much global warfare, and trying to do nation-building everywhere except in our own country!!! Man, then perhaps we could do better with our education system, for one thing. Then America might not be looked at as such a naive, inward-looking nation that we are, like that couple in Indonesia, perhaps still thinking the only safe place to get health care is in the USA. Wake up, folks!! America is no longer the only player in the world. Asia, in particular, has taken off dramatically, as the USA decays...

My sister Jean in the USA pays 25% of her earnings on health insurance premiums that don't always cover her care. Her policy has a $5,000 deductible, so she pays for most of her care out of pocket.

She is healthy. But when she arrived in Thailand over Christmas, she had a nasty, sharp cough. She said she had just decided it wasn't too bad to live with. She had had it for over a year!! And the cost of seeing an MD was enough of a deterrent, so she just lived with it. But I insisted she see the doctor here. Without an appointment, and for a $25 doctor fee and some meds, she was diagnosed with chronic bronchitis. Within days the cough cleared up. She returned for two more days (she was only in Thailand for a week). She spent three days at the hospital because it was so convenient, pleasant, caring, and affordable, with one-stop shopping. She didn't have to be sent all over to different facilities or to see different doctors for the various procedures, e.g., X-ray, etc.

In short, the system here works, even at the most expensive private hospital in the country (Bumrungrad), 60% of the patients are Thais. It is not just a place for rich foreigners to go. And Thailand has universal health care: for 30 baht ($1), all people in the country have access to basic health care. This is one of the few good things former Prime Minister Thaksin did to help the poor here. So why can Americans pour out their hearts and give so much to places in need like Haiti and Afghanistan, but neglect their own American neighbors in the USA!!!

Read a story about medical tourism. Thanks to James Cameron Mielke for the source email message.

Wednesday, March 3, 2010

We had control over what happened: Pain control at a child's end of life

When Christine Reilly's little boy was being treated for cancer, she told his doctor she could handle almost anything. "The only thing I will not be able to tolerate is him looking at me and saying, 'Mommy, it hurts," she recalled.

Michael died when he was five years old, of alveolar rhabdomyosarcoma, which was diagnosed when he was nine months old. He pain was well controlled, especially at the end of his life.

Christine said once she and her husband knew Michael's cancer had spread, their focus shifted from curing the disease and having a child who could live a normal life to making sure he could have the most peaceful death possible. He died ten days after the family came home to Massachusetts from a trip to Disney World.

After they returned home, Michael's pain medications made him sleepier each day as his disease took its natural course. "We felt fortunate we had control over what happened," she said.

Dr. Joanne Wolfe and her colleagues just published a paper in the Archives of Pediatrics and Adolescent Medicine on this topic - the first paper that weighs parents' thoughts about the end of life for their terminally ill children. More than one-eighth of these parents considered hastening their child's death. Five parents said they had actually asked a caregiver to speed their child's death.

Advice to parents of terminally ill children: Use this study as a starting point for a discussion about end-of-life care for children. Explore all the options for pain control with your child's doctors and nurses.

Read a story about a plan for the end of life. Thanks to Elizabeth Cooney for the source story in the March 2 issue of the Boston Globe.

Monday, March 1, 2010

Blue Cross Blue Shield's new policy on never events

Certain medical errors are so horrific that they should never occur: the wrong patient having surgery, or a blood transfusion of a mismatched type, as Tawnya Brown fatally received, for example.

These cases are tragic. Adding insult to injury, the billing system of the hospital or medical practice typically bills for the treatment, and is paid for the error. The national Blue Cross Blue Shield Association has just announced
that its 39 BCBS companies have followed Medicare’s lead and adopted a formal policy not to pay for certain “never” events:

"Wrong surgeries" (wrong patient, wrong body part or wrong procedure);

Pressure ulcers stages III & IV;

Catheter-associated urinary tract infections;

Vascular catheter-associated infection;

Surgical site infection, mediastinitis, following coronary artery bypass graft (CABG);

Air embolism;

Blood incompatibility;

Foreign object retained after surgery;

Falls and trauma (fracture, dislocation, intracranial injury, crushing injury, burn, electric shock);

Surgical-site infections following certain orthopedic procedures;

Surgical-site infections following bariatric surgery for obesity;

Manifestations of poor glycemic control; and

Deep vein thrombosis and pulmonary embolism following certain orthopedic procedures.

Advice to patient advocates: Forward this to your colleagues.