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Saturday, December 25, 2010

They'll be godmothers to thousands: Pulse oximetry for newborns

On Oct. 13, Kathleen Sebelius, the Secretary of the U.S. Department of Health and Human Services, sent a letter formally recommending that hospitals perform pulse oximetry screening of newborn babies. This followed the formal recommendation of the Secretary's Advisory Committee for Hereditable Disorders in Newborns and Children, which had met a month earlier. Pulse oximetry is performed via a painless clip (imagine a soft clothespin) on the baby's foot, to measure the oxygen in their blood.

Sebelius' recommendation was made on the ninth anniversary of the death of Mary Ellen Mannix’s son, James. Mary Ellen has become an influential patient advocate since then, and participates on the advisory board of the (newly born) Newborn Coalition.

The Newborn Coalition and the mission to get pulse oximetry as a recommendation on the SACHDNC were spearheaded by Annamarie Sarinaan. Annamarie's daughter, born with a heart defect, got good, error-free care, and survives.

Bravo to Annamarie and Mary Ellen, who will soon become virtual godmothers to the babies who will be healthier as a result of their work!

Advice: Forward this to your friends who are expecting a baby, and have them send this to their obstetricians.

Friday, December 24, 2010

I was one of 99: Hepatitis from injections

Evelyn McKnight's story:
In over 45 known outbreaks during the last twelve years, patients have been the victims of syringe re-use. I was one of 99 Nebraskans infected with hepatitis C in 2001 while receiving treatment for cancer. Syringes were reused, and a saline bag was misused. And ours is not an isolated incident. Over 150,000 Americans have been notified during the last decade that they have been put at risk for infection while receiving medical treatment. Infection control by ambulatory surgery centers is described by Dr. Melissa Schaefer and her colleagues in an article this month in the Journal of the American Medical Association.

Our research led me to discover inadequate level of protection for patients caused by widespread failure of health care providers to follow fundamental, basic injection safety practices. Astonishingly, these unsafe practices continue.

We started the HONOReform Foundation in 2007. Our vision is a nation in which health care providers always follow fundamental injection safety practices that are designed to protect all patients each and every time they receive an injection.

We are pleased to announce that HONOReform Foundation, along with the Southern Nevada Health District, launched our Compassionate Response Toolkit on December 1, 2010, in Las Vegas. Providers throughout the area will be able to give this helpful resource, written from the patient perspective from our year-long research, to anyone diagnosed with viral hepatitis. It is just a start for our toolkit. It will be available online to all patients…and will be offered to public health departments and other organizations.

I invite you to join us in our efforts—testifying and working with federal and state lawmakers on legislation to protect patients, helping public health officials prevent and respond to outbreaks, and providing inspirational and motivational compassion and support to people across the country who have been affected by unsafe injection practices.

Please visit our web site, HONOReform.org, and please contact me anytime, evelyn@HONOReform.org.

Read a daredevil’s hepatitis story.

Thursday, December 23, 2010

The patient's decision: Data on dialysis facilities' outcomes

Roberta Wager went on dialysis in the early 1980s. "I had nothing, no frame of reference," for choosing a dialysis facility, she said.

But now, dialysis patients can have a much more informed choice. Today, ProPublica made available extensive information on the quality of dialysis facilities across the U.S., in an easily searchable database.

"It gives you a snapshot of what a clinic is about," said Roberta, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "It should be the patient's right and the patient's decision to have [the numbers]….This is your life. Wouldn't you want to have everything in your favor?"

Almost 400,000 Americans depend on chronic dialysis to do what their failed kidneys cannot. Their number has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.

Advice: Dialysis patients should look up the outcomes of local facilities on the database, interview current dialysis facility staff, tour the facilities, and gather information about staff members' experience level and turnover rates.

Read another dialysis story from this blog, or read ProPublica's full story by Robin Fields.

Wednesday, December 22, 2010

The cult that cures: Listening to stories

"It's not surprising that storytelling became so fundamental to the culture of A.A. What is more interesting is what it contributes to recovery. 'It's just confession,' you might think, or 'It's just free psychotherapy.' And that's partially right. But it's not just confession or psychotherapy when everyone in the room is doing it, and it turns out that listening to stories is just as important – and maybe more important – than telling them. Stories break through loneliness. And perhaps the worst thing about alcoholism - and the reason I tried to kill myself that night – is the conviction that you deserve your loneliness, that no one needs to be cast out more than you do."

Advice: In this holiday season, listen to and tell lots of stories with others.

Read another story about the therapeutic fellowship of A.A.. Thanks to Clancy Martin for this excerpt from his warm and poignant article in the January 2011 issue of Harper's Magazine, ”The Drunk’s Club: A.A., the cult that cures”.

Tuesday, December 21, 2010

Woodstock in Kissimmee: IHI's National Forum Leadership Summit

In November 2000, a very pregnant woman entered a Boston teaching hospital to have her labor induced. "Suzanne" experienced a series of medical errors that resulted in the loss of her fetus and the rupture of her uterus. This required a hysterectomy and an 18-day stay in the surgical intensive care unit.

Five months later, after the insurer, Harvard's Risk Management Foundation, had settled with the family, and after the hospital's public apology, RMF approached the hospital, asking them to adapt Crew Resource Management to safeguard obstetrics. Physician leaders did so. In fact, the medical staff was so successful at bringing this form of team communication to the Obstetrics unit that the number of high-severity adverse events fell by 62%.

This is a case in point of how tragedy can sometimes ultimately lead to improved patient safety. That may not happen often, as it requires brave and dedicated leaders at the top and middle levels of a hospital, and a particular type of dedication by clinicians. Most hospitals lack leaders like Jim Reinertsen, Paul Levy, and Stephen Pratt. Their leadership was key and their receipt of the John Eisenberg Award was well deserved.

Two weeks ago, at the National Forum of the Institute for Healthcare Improvement near Orlando in Kissimmee, Florida, I had the pleasure of meeting Paul Levy and Dr. Pratt, and seeing Dr. Reinertsen again. Along with the heads of the Cautious Patient Foundation, Paul had charmed his fellow hospital CEOs into sponsoring 50 patient activists from around the country to participate in the Forum. I was one of the lucky ones who'd been chosen to attend the Leadership Summit.

For we patient advocates, it was our Woodstock, a mass intoxicating love-in that convened widely scattered like-minded young-at-hearts who are critical of the Establishment. I expect to tell many of our intense and redemptive stories in this blog over the next few months. Many of us hope to turn our tragedies into improvements as solid, life-giving, and lasting as the use of CRM in Obstetrics.

I'd like to salute the leaders of Boston's Beth Israel Deaconess Medical Center, and the doctors who joined us in the Leadership Summit, including some who have harrowing stories as patients: Carl Flatley, Julia Hallisy, Kevin Kavanagh, Gil Mileikowsky, Cari Oliver, Kavita Patel, and Stephen Pratt.

Read another crew resource management story, or read Stephen Pratt's article of Dec. 2007 in the Joint Commission Journal on Quality and Safety.

Monday, November 29, 2010

70% don't know: Carl Flatley's story on sepsis

Watch this short video video, prepared by Carl Flatley, the founder and Chairman of the Sepsis Alliance.

Read another sepsis story, or see the Sepsis Alliance website.

Thursday, November 25, 2010

Which they can take to market: The Hunger Site

Today, on Thanksgiving, I'm thinking only about food, not about patient safety. You can get food to hungry people, for free, every day. The Hunger Site, at http://www.TheHungerSite.com, enrolls advertisers who will pay for food for a starving person, in exchange for the honor of showing their ad to you briefly on the website. You can click there as often as once a day. When you click, the money generated goes directly to Mercy Corps, Feeding America, and Millennium Promise.

Here's the story of how the aid reached Zainbon in the Aceh province of Indonesia:

Zainbon is a 37-year-old rice farmer with a black baseball cap perched atop her pink headscarf. Her husband mans a desk as a temporary, low-level bureaucrat in the district transportation office nearby, but still they struggle to find the rupiahs each month to get by. She pulls at her scarf, explaining how they stretch six or seven dollars a day across the needs of cooking staples, school fees, fuel and now, in the fall planting season, fertilizer and rice seed. A Mercy Corps survey in the area recently found staple food prices climbing between ten and twenty-five percent, on top of fuel prices that jumped forty percent earlier this year.

"This is hugely important for us — the staples are rising and the salary isn't keeping pace," Zainbon says. "What about others whose husbands are just farming? They're struggling even worse."

This worldwide crisis is striking an area just starting to find its feet again after a vicious cycle of calamity. For decades, a rural separatist conflict kept many farmers out of their rice fields and fruit plantations for fear that they would be caught in the crossfire. Then in 2004, the Asian tsunami sent a wall of water up to thirty feet deep and flattened everything in the area, including the entire village of Naga Umbang.

With the houses now rebuilt, the rice paddies cleared of debris and new water buffalo roaming the yards, villagers are now teaming with Mercy Corps to strengthen their rice farming techniques and improve crop yields. And with food prices bearing down on locals, it could't come at a better time.

"We need to modernize," Zainbon said through a translator. "We're already thinking about when Mercy Corps leaves here, and this transfer of knowledge is one way we can build independence. Money from an NGO would go quickly, but knowledge and technology sticks in your mind."

The improved techniques are aimed at boosting incomes. Typically most of the rice harvest in villages like this goes to feed families. But if farmers in Naga Umbang can grow more efficiently, they will begin to see surplus rice from the same backbreaking labor they currently put into the season. And they will hopefully have the resolve to plant a second crop each year, which they can take to market in nearby cities.

Advice: Please click on The Hunger Site's "Click Here to Give – It's Free" button today, and every day. The site is run by someone I know and trust.

Thanks to the Mercy Corps for providing this story, which is reprinted here.

Wednesday, November 24, 2010

I thought this was an odd response: A father’s intuition on misdiagnosis

John James' story:
Early in my son's failed diagnosis I told his lead cardiologist that I could get a previous electrocardiogram [which produces graphs of the heart's electrical activity over time] done a few months before my son's non-fatal collapse. That cardiologist wasn't interested in this previous EKG. Since I carried a small card in my wallet with my EKG, I thought this was an odd response from the cardiologist if he knew what he was doing. My intuition said I need to find another hospital for my son. Unfortunately, I did not follow my intuition and my son lost his life to incompetent medical care. The changes in my son's EKG would have pointed the way to the proper diagnosis, which was acquired long QT syndrome [a rare heart condition].

John James' Advice: If I could tell patients only one thing it would be to follow your intuition. If you think there is something wrong where you or a loved one is being diagnosed or treated then take charge, get a second opinion, or just get out.

Read a happier story about the role of a patient’s intuition in choosing medical treatment. Thanks to John James for this story.

Click here to get John’s book and e-newsletter subscription.

Tuesday, November 23, 2010

How cool is that?: the Personal Health Record

The administrative director of Patient Always First has an 88-year-old father who lives in another state. After a lengthy hospital stay about a year and a half ago, he returned to his home but was no longer able to live alone. Different aides come in to help him as well as a physical therapist who comes to see and work with him twice a week.

Before Betsy used the PatientAlways First Health Record (PFHR), she would ask her dad, “are you taking your medicines?” and he would always say “yes.” His aide would also say “yes, I give him what he needs.”

She decided to start a PFHR for him. She called his pharmacist and got a list of his medicines, and then she called her father’s doctor, and asked if these medicines were the ones he should be taking. (She faxed the list to the doctor’s office.)

(Doctors would be glad to check a list of medicines like this because, obviously, they want you on the medicines that they want you on.)

So imagine her surprise when she learned that her father was still taking several medicines that the doctor had discontinued and replaced with different prescriptions. The doctor had no way of knowing that his patient was still taking the old medications as well as the new ones. (A real-life scenario of “medications: just plain mix-ups.”) The pharmacy continued to fill all the re-ordered prescriptions, old and new, and because so many different people were coming to the house to help, the aides weren’t exactly sure what he was supposed to be taking. The doctor was able to recognize the errors and cross out the medications that were no longer to be given.

Betsy then put her dad’s correct medications into the PFHR, and added his diagnoses, allergies, important contacts, etc. as she remembered them and as she asked him to recall. She printed out a copy of the PFHR and it sits on top of the medicine box so that anyone coming in to help can just look at the list and know what medicines to give.

(Remember, just do it. From your memory, it’s going to be better than what your doctor has had time to organize.)

Then, since the PFHR has this really neat feature where you can let other people access the record, or add to it (only with your permission), she allowed the physical therapist who visits her dad to have access to add to the record. So now, when the physical therapist comes, he types the date, vital signs, and other information about her dad’s treatment and condition that day into the record. And Betsy can see all that information when she logs on.

So Betsy can have some peace about helping her father long-distance like this- she really is checking in and helping with his health.

And if her dad should need to go to the emergency room again, then his aide could bring the printed-out PFHR, or Betsy could fax it to the ER, or the ER could even access it online themselves (if Betsy or her father gives them the username and password.)

Now, how cool is that?

Advice to Sandwich Generation women who are caring for a distant parent:
Get a personal health record for them.

Read another personal health record story, or read Dr. Oliver’s blog.

Thanks to Dr. Cari Oliver for her permission to reprint this story from her book, “Cautious Care: A Guide for Patients.”

Thursday, August 26, 2010

To complete the miscarriage at home: A lack of discharge instructions

Rene's story:
Years ago I was diagnosed by more than one fertility specialist as being infertile because I had only one fallopian tube that was totally blocked. I lost my other fallopian tube in 1990 when I had a tubal pregnancy. To add to the odds stacking up against us, my husband Arthur had a low sperm count. We were told our only alternative was in vitro fertilization (IVF) which was not affordable. Unfortunately most insurance companies don't pay for this procedure, so we didn't worry about it. God had blessed me with two daughters before I got married that Arthur legally adopted at a young age. Our daughters were all grown up and out of the house. We were living life to the fullest without the responsibility of being tied down to children, when suddenly after seventeen years of marriage and not using a contraceptive I became pregnant with our son, who was conceived on February 15, 2008, just one day after our seventeen year wedding anniversary. What an anniversary gift! The doctors still can't explain how we conceived our love baby.

I had prenatal care early in the pregnancy. Then in my second trimester, my water bag broke, and I went to the hospital here in Louisiana. I was sent home to complete my miscarriage with no discharge instructions. I was told I would be going home to pass tissue the size of a bar of soap. We left the E.R. at 5 am, on Arthur's birthday, and delivered our son at home 45 minutes later in the toilet. Arthur grabbed baby Trey who was still alive, breathing and gasping for air. Within minutes Trey stopped breathing and went limp in Arthur's hands. Our love baby was gone, we would have never left the E.R. if we were told it was a possibility our baby would be still alive.

It was a nightmare! They hadn't told me that could happen. There's no way they can make me believe that was normal. But that's what they said at the medical review panel, and that it was not preventable.

At the deposition, the E.R. doctor had tears in his eyes, and said, "I didn't realize this would happen," even though his lawyer was trying to tell him to shut up. But my Ob Gyn doctor could care less! She just sat there, twirling the ice in her glass, looking at me with such bitterness. If she'd said, "Rene, I'm sorry, I made a mistake," it would be different. But to pretend that I'm the one who has a problem, really irritated me. I went to this doctor because I trusted her, she was the best. She said she would take care of me and she didn't. There should be a law to prevent hospitals from discharging people without instructions when they most need them!

Rene's Advice: All week long my body was telling me something. Everybody knows their own body. If something's not right, it's not right. If you feel uncomfortable about a procedure, ask questions. Realize that the doctor is a man and not God, and ask questions about what they're doing, and why. If your body is giving you warning signs, if the doctor can't see you, get a second opinion.

Thanks to Rene McCoy for sharing her story.

Read another story on a premature birth.

Friday, August 13, 2010

I was not told of the complications: Botched Lasik Surgery

Caprice’s story:
I went to the eye center to see if I would be a candidate for Lasik. I was not told of the complications other than the obvious, I was never told of the permanent side effects (reading glasses). I was assured that I could attain 20/20 with the surgery. After my first surgery the doctor left "debris" under the flap of the right eye, and my eye became infected. I had excruciating headaches and the antibiotics did not help.
I went back in, they had to lift the flap and remove the debris, I was not told this would change the prescription of the eye. After removing the "debris" he left behind in the initial surgery my eyesight in my left eye was 20/40 and it became 20/100 in the right. I was not allowed to use any kind of corrective lenses at this time, again I was suffering severe headaches due to the disparity between the vision in both eyes. Unable to see adequately I subsequently lost my job. I went in to have the right eye corrected again.

After this surgery both eyes were 20/40 and I failed my eye exam for my drivers license. I was told I would have to wait a year before they could go back in and "enhance my vision. One year later I received a notice in the mail advising me it was time to come in and have my eyes checked. I returned to their office only to be told I would be charged for the visit. I was indignant and told them it was a follow-up from the previous surgeries, that they had not given me 20/20 and I would not pay. I was escorted back for more tests on my eyes. I was told they could get me 20/20 this time and i asked would this affect my near vision I was assured by two technicians it would not. I was scheduled for the "enhancement." After the "enhancement" surgery I discovered the doctor not only had left "debris" in the right eye he had also left some in the left eye as well. The field of vision in my right eye was greatly obstructed.

Not wanting to allow this "doctor" to touch me again I went to a specialist in Dallas only to discover not only had the doctor left "debris" in my right and left eyes, he had left creases in the flap of the right and ruined the lens in that eye as well! I got astigmatism in the left eye and I have to permanently wear reading glasses all the time. The specialist spent 45 minutes cleaning out the "debris" and "ironing" out the creases. I want to tell the world what they did to me!

Read another story about elective surgery. Thanks to Caprice for sharing her story.

Monday, May 10, 2010

When you buy a car: Inappropriate surgery

Here's an idea that should both empower consumers and nudge costs down.

When you buy a car, critical information for this major purchase decision is immediately available, and clearly and prominently displayed on key features of the product, e.g., the miles per gallon. The decision of whether to have surgery is just as important, but information as clear and objective as that is usually absent.

The National Priorities Partnership is a broad group of experts, convened by the National Quality Forum, who have agreed that certain operations are often unwarranted.

Patients who are considering a coronary artery bypass graft (CABG), hysterectomy, knee/hip replacement, prostatectomy, percutaneous transluminal coronary angioplasty (PTCA), or spinal surgery should carefully consider beforehand whether the surgery is appropriate for them. To enable them to do so, patient advocates should find out and tell them the:

Survival rate;

Identification and frequency of the most common adverse effect;

Fraction of patients who need the operation to be performed again;

Best alternative to surgery; and

Cost to be billed by the surgeon and hospital.

I wish I had this information when I considered surgery. A friend's father also would probably have wanted to know it, as it might have saved him from an ineffective operation that left him incontinent. When consumers learn this information, many will probably consider alternatives to surgery, which may well be less expensive.

Thursday, April 22, 2010

Long, full and joyous: Don Berwick and the pursuit of health

On Monday, Pres. Obama formally nominated Dr. Donald Berwick to be the Administrator of the Centers for Medicare and Medicaid Services.

At a recent conference of the Institute for Healthcare Improvement, Don described health care as a means to an end. "Health care has no intrinsic value, none," he said. "Health does. Joy does. Peace does….The best health care is the very least health care we need to gain the long, full and joyous lives that we really want. The best hospital bed is empty, not full. The best CT scan is the one we don't need to take. The best doctor visit is the one we don't need to have."

This was a tough message to hear for the hospital leaders who comprised most of his audience. But Don has never shied away from delivering tough messages clearly. That quality makes him a good choice for this impossible job. Perhaps Don's greatest virtue in this context, however, is his single-minded focus on a single vital aim.

Health in its fullest sense is our goal. Health is far from the absence of disease, which is usually the way it has been defined in medical care settings.

Even early detection isn't good enough. Better is the prevention of conditions that leaves us whole, without the need for medical procedures like biopsies. That will take an enormous transformation of our healthcare system. Don, I salute you, and I'm reporting for duty!

Thanks to Robert Pear for the source story in the April 20 issue of the New York Times.

Thursday, April 15, 2010

If you have a family member in the hospital: Rapid Response methods

Our Rapid Response Work Group of the Consumer Health Quality Council of Health Care for All will encourage insurers in Massachusetts to publicize an important message to their members throughout Massachusetts. We hope they'll tell people how they can call for a Rapid Response method or team in the hospital, if needed, to rescue a family member whose health is suddenly deteriorating in the hospital. We hope they'll include it in their print and e-newsletters and emails to their members.

The announcement will alert people that certain warning signs often precede, by several hours, a usually fatal heart attack or respiratory arrest in the hospital. "Failure to rescue" is one of the most common causes of in-hospital deaths, so this could save many people's lives.

The announcement reads like this:

Have a Family Member in the Hospital?

Be aware that certain signs can warn that a heart attack or respiratory arrest can occur in the next few hours:

A sustained noticeable change, either an increase or decrease, in their:

Breathing rate;

Heart rate or Pulse; or

Blood pressure;

Or if they experience Confusion.

You can ask the nurse about the specific criteria your hospital uses.

If you see that your loved one is experiencing one or more of these signs while in the hospital, you can insist that the hospital respond promptly with a "Rapid Response Method" or a "Rapid Response Team." That's a new state law (Chapter 305 of Massachusetts General Laws), and is required by the hospital's accrediting body, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO).

Non-Massachusetts residents should realize that you, too, can call for a Rapid Response, per the JCAHO regulations, even if you don't have a state law requiring it.

Read another story about rapid response teams.

Wednesday, April 7, 2010

The paternalism is a little more kind-hearted now: Patient's participation in medical decision-making

David Leonhardt tells this story in his column today:
Dr. Dale Collins Vidal, a reconstructive breast surgeon at the Dartmouth-Hitchcock Medical Center, told me a story about a patient's husband who asked to sit in on the medical team's discussion of his wife's case. The doctors said no, because they were uncomfortable with him knowing about the uncertainty surrounding the case. "The paternalism is a little more kind-hearted than it was in the past," Dr. Collins Vidal says, "but it's still paternalism."

As a rule of thumb, Don Berwick suggests "nothing about me without me." This fails the test.

Advice: Patients and their spouses need to learn about the uncertainty that usually accompanies the decision the doctor is making. If this is impossible during a hectic, scary time in the hospital, get a professional patient advocate to help you understand your choices. The alternative is to leave key decisions to well-meaning strangers who don't know your loved one's values and preferences.

Thanks to David Leonhardt for the source story in today's New York Times.

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.

Thursday, February 25, 2010

Fish, buffalo, salad, and Air Force 2: Dick Cheney's Fifth Heart Attack

Katie Drummond writes engagingly on "How Does Dick Cheney’s Ticker Keep on Ticking?"

The recent Vice President suffered another mild heart attack – his fifth – and was released from the hospital earlier this week. He has had eight cardiac events, which have been treated with a quadruple bypass (a CABG), an implanted stent, an implanted cardioverter defibrillator, which was later replaced, and many medications.

The secret of his survival? Cheney has performed aggressive and sustained self-care. After his first heart attack, at age 37, Cheney ended his 20-year heavy smoking habit. Later, before becoming Vice President, he lost 25 pounds. When he flew on Air Force 2, he often brought his elliptical trainer. Aides say his diet now consists of "fish, buffalo, and salad."

Another secret to his survival has been his top-flight, 24/7 medical attention. While he was Vice President, the White House Medical Unit accompanied him with a fully loaded medical bag. As Cheney commented in 2003, "I've got a doc with me 24 hours a day who watches me very carefully."

Advice to heart patients who don't have Air Force 2 and your own 24-hour doctor: Safeguard your own health as actively as Dick Cheney.

Read a story about former president George W. Bush. Thanks to Katie Driscoll for the source story in the AOL News of Feb. 24.

Friday, February 19, 2010

A pretty fair trade: Abdominal surgery in Bangkok

From James Cameron Mielke's Christmas letter:
While packing for my summer visit to the USA, I noticed a slight bulge in my abdominal incision, and headed instead to Bangkok for surgery - it all seemed like such a breeze compared to the nightmare I endured three years before when admitted in emergency and life-threatening condition – this time was so much easier just to check in as scheduled. With practiced precision, the nurse located one of my elusive veins to start the IV, the anesthesiologist wished me a pleasant snooze, and after 90 minutes on the table my surgeon had successfully inserted a large mesh across my entire abdomen – like getting a new set of surgically implanted "six-pack" abs!

Man, what a deal! Emerging from the unexpected surgery and almost relieved to have to cancel my USA trip – I was dreading the long journey anyway, and with all the economic stress and other difficulties there…and I was able to recover my frequent flier miles as well! Interestingly, I had been feeling strangely resistant to the whole thing - as if some underlying intuitive awareness was trying to alert me to this potentially disastrous trip. Apparently, I was literally coming apart at the seams - the longitudinal incision that runs from stem to sternum was ripping apart and the muscles were separating, which meant that I was a walking time bomb. It would not have been at all pleasant if my guts had decided to spill out while on the plane or somewhere away from home. And of course, I would have taken a huge financial hit if I had needed emergency surgery while in the USA. Thank goodness I live in Thailand where my highly specialized state-of-the-art surgery, anesthesiology, and three days of in-patient hospital care came to just $2,000, which is about what my USA holiday would have cost - a pretty fair trade considering I can now look forward to an even better quality of life for years to come! Many of the competent and eager nurses remembered me from before, and my cost-conscious surgeon even gave me the remaining portion of high-tech mesh that another patient had purchased but didn't use. My sister Jean also enjoyed high quality, efficient and affordable health care during her visit to Phuket during Christmas week.

So, once again, I cannot believe my good fortune, not only to have avoided another possible disaster, but also to be given what now seems like a gift – such a wonderful gift of enhanced quality of health and blessed freedom to continue enjoying my life! I can only feel the deepest gratitude for it all – and am humbled once again by the amazing blessings that keep coming my way. As the risk for infection decreased with each day of healing, and with deep, slow-dissolving sutures like a set of guitar strings holding me together, I set off for my annual four months of work. This year I joined a team of consultants to design a five-year $60 million regional communicable diseases control project in Cambodia, Lao PDR and Viet Nam.

Read a story about another American's health crisis far away from the U.S.

Friday, February 12, 2010

The former Commander in Chief toed the line: Bill Clinton's self-care

Former President Bill Clinton, now 63, has a history of heart trouble. In 2004, he experienced chest pain and shortness of breath, and had quadruple coronary artery bypass graft (CABG) surgery. Later, feeling that it was hard to breathe because of a rare complication of scar tissue and fluid build-up in his lung, he had another operation, in March 2005.

He experienced chest pain again a few days ago, and had another operation on Thursday. Surgeons in a New York hospital placed two stents (metal mesh tubes) inside a blocked heart artery to prop it open, after his bypass graft had become obstructed. Such vein segments taken from the patient's leg often become clogged in this way after a few years, requiring another operation.

I've seen stent surgery, and it's magical. The surgeon snakes a long narrow tube up several feet through a tiny incision in the inside upper thigh of the patient, while the surgeon watches a monitor that shows the patient's arteries and the progress of the long sheath, illuminated as needed by puffs of a fluoroscopic dye. The stent, initially compressed, is slid through the sheath, opening itself as it leaves the sheath. The only analogy is the way that a model ship in a bottle snaps out into its final form after emerging through the bottleneck. Finally, only a Bandaid is needed to protect the site of the incision.

Mr. Clinton did not suffer a heart attack. (Indeed, he was continuing to talk on a cell phone about relief and recovery efforts in Haiti, even as he was being wheeled into the operating room.) Rather, he heeded his body's signals by seeking medical attention promptly.

The head of Cardiology at New York-Presbyterian/Columbia hospital, Dr. Allan Schwartz, noted that "President Clinton has really toed the line in terms of diet and exercise," and said his cholesterol numbers were normal.

Advice to middle-aged men with chest pain:
Don't ignore your body's pain signals.

Read another story of a famous person’s successful heart surgery. Thanks to Peter Baker and Angela Macropoulos for the source story in today's New York Times.

Wednesday, February 10, 2010

But for the grace of God: Abigaile LeBron and caps on medical malpractice damages

After vaginal bleeding from unknown causes in the third semester of her pregnancy, Frances Lebron had a very difficult labor, and gave birth by C-section to Abigaile LeBron in an Illinois hospital in 2005.

It's hard to know exactly what went wrong. A jury agreed that Frances' Ob-Gyn doctor and nurse had not performed appropriate and timely tests on Frances, and/or didn't recognize, and appropriately intervene upon discovery of, a non-reassuring fetal heart tracing, and/or inappropriately continued labor-delaying ("tocolytic") medication, and/or failed to perform the C-section promptly enough.

The poor little girl suffered severe and lasting brain injury, and cerebral palsy, among other results, and will not be able to feed herself; she needs a gastronomy tube. She'll need substantial help for the activities of daily living, probably throughout her life. Of course, that will cost a lot of money – which the jury awarded.

The Illinois Supreme Court recently decided an appeal of that decision. The state Supreme Court ruled that a newly legislated cap on damages for medical malpractice is unconstitutional. The result is that the jury's award will indeed be able to help Frances care for Abigaile.

There, but for the grace of God, go I. Twenty years ago, doctors at a Harvard teaching hospital slowed my wife's premature labor with such a "tocolytic" drug (Turbutalene), and continued the drug too long, as with Frances – but my son was born healthy, and my wife had no ill effects. We were lucky.

I'm sorry for the anguish suffered by Frances and Abigaile, and by their doctor and nurse.

Advice for people who've suffered catastrophic medical errors:
Ask potential lawyers if you'll be faced with a cap on damages in your state.

Read another story on a C-section error. Thanks to Illinois attorney Martin Dolan and Lauren Bishop for discussing and forwarding this story.

Saturday, February 6, 2010

He had to be re-admitted: Rep. John Murtha's hospital acquired infection

U.S. Representative John Murtha, Chairman of the House military appropriations committee, is recuperating in the intensive care unit after a surgical infection from his gallbladder surgery. He'd had laparoscopic surgery to remove the gallbladder in late January, and had to be re-admitted to a hospital because of the infection.

He was in grave condition following the hospital infection. Now the infection is responding to antibiotics, and the condition of the 77-year-old congressman has been improving.

Nurses should provide antibiotics before surgery (prophylactic antibiotics) to prevent surgical infections, but don't always do so. A surgical checklist should remind nurses and doctors about the antibiotics, but checklists are not always used.

Advice to patient advocates of patients undergoing surgery: Ask the surgeon beforehand if he or she uses a checklist. If you don't hear Yes, choose another surgeon. If they don't use a checklist, or if they bristle at the question, that might indicate arrogance that can intimidate their clinical teammates into silence when a surgical error is about to occur.

Read other surgical infection stories. Thanks to Carol D. Leonnig and Paul Kane for their background article in the Washington Post of Feb. 3.

Friday, February 5, 2010

It entitled him to Medicaid coverage: A pharmacy benefit error

Zumante Lucero struggled with asthma for the last nine years, since he was three months old. He loved karate, drawing cartoon figures, and riding bikes with his brothers and sisters near their Denver home. His doctor said his lungs were severely inflamed, so he required Advair twice a day. Zumante's condition had been so severe since age six that he was covered by Social Security, which entitled him to Medicaid coverage.

Yet the retail pharmacy's computer system mistakenly showed he was not eligible for prescription drug coverage.

He was brought to the Emergency Room in May and June and given free samples of the medicine.

But it was not enough. On July 16, his mother heard him call from upstairs: he couldn't breathe. She called an ambulance, but Zumante lost consciousness before it arrived, and never regained consciousness.

Advice to parents: If you can't get the medicine your child needs after three calls to the insurer, go to the CEO – and to the press, if necessary.

Read another asthma story. Thanks to Allison Sherry for the source story in the Denver Post on Feb 4.

Thursday, February 4, 2010

What we have known all along: ACGME's review of guidelines for residents' work hours

I still remember the helpless fear I felt on a bus in 1978 as we twisted our way along the narrow hilly road leading to Jerusalem, steered by a sleepy bus driver. Each time he nodded off, his head then snapped right up again. Thank God, we arrived safely.

But God didn't prevent an accident from exhaustion when my son was born, 12 years later. Going into premature labor eight weeks early, my wife was admitted to a Harvard teaching hospital, where doctors delayed her childbirth for a week. Then when hearing one evening that she was experiencing abdominal pain, the sleep-deprived residents confidently attributed them to gas pains! Finally the next morning, a pelvic exam revealed her cervix was nearly fully dilated, ready for delivery. Exhaustion had ruined their judgment, so my wife had to suffer the pain of childbirth for 12 hours without any pain medication.

Now the Accreditation Council on Graduate Medical Education (ACGME) may start facing what we have known all along: exhaustion creates errors. Even for very intelligent and dedicated doctors. At ACGME's Board meeting on Feb. 7 they'll consider whether to restrict the hours that hospital residents can work.

Supporters of the status quo say that shorter work hours require more dangerous hand-offs from one doctor to another. This is seductive but misleading. Yes, sometimes an alert and well-rested resident hands off the responsibility for a patient's care to another alert and well-rested resident, and communicates clearly and comprehensively. But much more often, an exhausted resident hands off to a chronically sleep-deprived resident. We know that exhaustion fogs memory, and clouds judgment and complex thinking, like the ability to prioritize and summarize. So it's hard to imagine that hand-offs as they are now performed consistently provide a clear and thorough briefing for a patient's care.

The best solution is both to reduce the use of exhausted residents, and thoughtfully improve the hand-off process. Error-proof it by minimizing the reliance on memory. For example, how about a "Hand-off" command in the electronic medical record system that could automatically summarize the patient's diagnosis and recent key lab results and vital signs for a doctor coming on shift? Or the audio recording of the hand-off communication as it occurs, for prompt automatic transcription into the electronic medical record?

A bereaved mother and national patient safety leader – Helen Haskell – organized a press conference today on these topics. She is leading an effort to reduce residents' work hours – which could have saved the life of her 15-year-old son, Lewis Blackman. See the new website on shortening residents' work hours, and share your story there.

Would you want my Israeli bus driver as your child's doctor in the hospital?

Read a fatal fatigue error story.

Wednesday, February 3, 2010

Bring a man's shirt: A recovery wear garment for mastectomy patients

Peg Feodoroff's story:
As a result of my and my youngest sister's cancer experiences, we were compelled to start a company that would improve the environment in which people are asked to heal and recover. We designed a Recovery Wear garment that we call the Original Healing Threads. This was our first project and we have many other ideas to further our mission. However, we need to be profitable before we can proceed.

Hospitals cannot afford to purchase our Healing Threads for their patients. We do have 4 hospitals throughout the USA that have forward-thinking decision makers who give our Healing Threads to their mastectomy patients before their surgery. They raise the money to pay for them via the medical institution's philanthropic arm. Wearing our Healing Threads allow women to recover and heal with their dignity and modesty intact. The patented break-away panels allow only the body parts that need to be exposed, to BE exposed. The interior pockets hold post-surgery drainage bulbs discreetly and comfortably. Did you know that the medical community has a common practice of preparing women for breast surgery by suggesting that they bring a MAN'S SHIRT to the hospital for their trip home? Now, your breast or 2 has been removed and now they confirm your feelings of inadequacy as a woman by advising you to bring in a man’s shirt! Not so subliminal a message there! Oh, and then they clip the drainage bulbs to said shirt where they constantly remind you that you no longer have a breast. The Hippocratic Oath states, "First, do no harm," and obviously is taken as an admonition against physical harm. The psychological harm being done is undeniable and endless.

Our garments provide our customers with dignity, modesty, and empowerment. Being able to say "no" to a hospital gown empowers a person to say "no" to other directives: to ask questions; to get 2nd or 3rd opinions; to dialogue with the doc re options, side effects, etc., etc.. To take control and ownership of their own health, their own illness or disease. To bring to the battle the mind, the body and the spirit. Without all 3 working together recovery is not possible.

Yes, you do have a choice, a choice that has won praise from many medical personnel who have worked with patients wearing it. Our Healing Threads are not only attractive, they are supremely functional.

Read a story about hospital gowns. Thanks to Peg Feodoroff, the president of Healing Threads, for the story.

Sunday, January 31, 2010

Real Men Don't Wear Gowns

Ken's rant:
I like to look silly – once in a great while, at Halloween, and Purim. But even then, I don't cross-dress.

I don't do dresses. And not nightgowns, negligees, chemises, and not even aprons, either.

So, hospital nurse, don't give me a johnny – one of those ridiculous open-to-the-back gowns with a drawstring and little chotchke designs.

There are 5,000 other hospitals in the country, and if you hand me a johnny, I'll haul myself out of your hospital bed and find a hospital that doesn't make me wear one.

Advice to patient advocates: Tell your clients to bring their own bathrobe or favorite pajamas to the hospital.

Read a very different story about a patient’s dignity in the hospital.

Friday, January 29, 2010

A strong step in the right direction: What Massachusetts Voters Did Not Say

Here's my letter to the editor after the election of Scott Brown to the U.S. Senate:

Massachusetts citizens have consistently supported the state's universal health insurance law. The most recent survey, in September, found that 79% want the law continued. The law has the support of Republicans and Democrats, including some prominent ones. The Republican front-runner in the gubernatorial race, Charles Baker, calls the law "a strong step in the right direction" and indeed, calls for expanding services, according to his campaign's website. Sen. Scott Brown voted for the law as a state senator, and in his recent campaign for the U.S. Senate, did not ask for its repeal. Republican Governor Mitt Romney signed the bill into law. Massachusetts' Republicans and Democrats generally support the law.

The meaning of Massachusetts voters' election of Scott Brown to the U.S. Senate is unclear – but it clearly does not show general dissatisfaction with universal health insurance as it is in effect here. It would be a tragic mistake, harming the health of tens of millions of Americans, to conclude that Massachusetts residents have spoken against expanded health insurance coverage.

Read Dr. Atul Gawande's opinion on the effects of Massachusetts’ near-universal health insurance coverage.

Advice: Forward this to your U.S. congressman.

Thursday, January 28, 2010

Through my dying day, and beyond: Gay Culverhouse Player Outreach Program

Her father was the founder of the Tampa Bay Buccaneers football team, and she herself later served as the company president. Somewhere along the line, Gay Culverhouse took note of the frequent long-term disabilities that NFL players suffer, and she took it to heart.

In October, she testified critically to Congress' Judiciary Committee of the House of Representatives about the NFL’s lax policy toward concussions and overall player safety. She vowed publicly to set up an organization to seek out former players in need, arrange their doctor visits, and help complete their paperwork.

She delivered. The fledgling Gay Culverhouse Player Outreach Program first sent an advocate to help Jerry Eckwood, a popular running back for the Buccaneers from 1979 to 1981. Jerry, now 55 years old, is unable to go grocery shopping, handle his checkbook, function on his own, or often even to speak coherently. His doctor strongly suspects he has dementia, after Jerry’s multiple concussions as a football player.

Gay has worked quickly to build the nonprofit program, which is based in Tampa, Florida. "I have to be made obsolete. The NFL is hoping that I made a one-shot deal in Congress and now I’ll go away. I’m going to fund this through my dying day and beyond. This thing can't die when I die."

Gay's selflessness and drive are particularly laudable because she herself is terminally ill with myelofibrosis, a disorder of the bone marrow that causes severe anemia and kidney failure. Former players admire her toughness and compassion. Former All-Pro tight end Jimmie Giles said, "I've never heard of anybody in football stepping up to the plate like this. This lady, she's like Gandhi to us."

Read another NFL concussion story. Thanks to Alan Schwarz for the source story in the Jan. 22 issue of the New York Times.

Advice to health advocates: Live like Gay Culverhouse.

Wednesday, January 27, 2010

He clung to this wish: Fatal radiation overdose

Scott Jerome-Parks was raised in a conservative family in Gulfport, Mississippi, later moving to Toronto, and then New York City. There, he met his Canadian-born wife Carmen, a dancer, singer and aspiring actress. He took a job as a computer and systems analyst, at the southern tip of Manhattan.

Haunted by the deaths he saw up-close on September 11, 2001, he volunteered to work with the Red Cross near "the Pile." He developed what he initially thought was a nagging sinus infection, diagnosed two months later as tongue cancer. His doctor believes there was a link between his tongue cancer and the toxic dust from the collapsed towers, though the cause of his cancer was never proven.

Scott approached his illness as any careful consumer would, evaluating the treatment options before choosing a hospital. He chose a hospital that provided Intensity Modulated Radiation Therapy (IMRT), which it advertised as more precisely targeted, and so having fewer serious side effects, than conventional radiation therapy.

The first four radiation treatments were provided as prescribed. The medical physicist revised the treatment plan for the fifth session to better protect Scott's teeth from radiation damage, at the suggestion of Scott's doctor. Such a revision of the treatment plan is a time-consuming task. As the medical physicist tried to save the computer program containing the revised treatment, late in the morning of March 14, 2005, the system crashed, after appearing to save the changes first. An hour later, Scott's doctor approved the new plan. Half an hour later, the computer crashed again. Six minutes later, staff administered the first of several radioactive beams. They administered another round the next day.

Two friends – a layman and a nurse – noticed something wrong because of Scott's intense pain, and swelling throughout his head and neck, and asked the hospital to check on Scott. The hospital sent a psychiatrist. Scott received another round the next day. Several hours later, the medical physicist ran a test to see whether the radiation had been provided appropriately. Then she tested again, and tested a third time. A frightful mistake had been made: Scott's entire neck had been exposed, causing a large overdose of radiation. The damaged cells were not reparable.

Scott died in early 2007 at age 43.

The New York City hospital treating him for tongue cancer had failed to detect a computer error that directed a linear accelerator to blast his brain stem and neck with errant beams of radiation - not once, but on three consecutive days.

In a recent exceptionally thorough data analysis, the New York Times found that the complexity of this new technology has created new avenues for error – through software flaws, faulty programming, poor safety procedures, or inadequate staffing or training.

As he lay dying, he clung to this wish: that his fatal radiation overdose – which left him deaf, struggling to see, unable to swallow, burned, with his teeth falling out, with ulcers in his mouth and throat, nauseated, in severe pain and finally unable to breathe – be studied and talked about publicly so that others might not have to live his nightmare.

Read a happier radiation story. Thanks to Walt Bogdanich for the source story in the New York Times of Jan. 24.

Advice to patient advocates for patients undergoing radiation: Insist on a test by the medical physicist before radiation is used. The test is customary but is sometimes skipped, as it was here.

Sunday, January 24, 2010

I was a good patient: Patient-doctor relationship

Nurse Practitioner Richard Ferris' story:

I am so damn tired of this...I am not my f----ing T cell count or viral load level and I wish to hell people would stop treating me like I am. It is degrading, and worse yet, it puts up roadblocks to communication between friends, medical providers, and the rest of the damn world.

I have been practicing AIDS medicine since the beginning of the epidemic. Today is very different and as a clinician I am a much happier man because of the advances in HIV therapy, but we have become a community that is still fixated on clinical numbers and not the person sitting in front of us and this had got to stop.

I recently felt compelled to change my AIDS doc because all I was a bunch of numbers to her. I was the "good" patient." She knew I took care of myself, was sober, worked out, and was nearly perfect with sticking to my meds. So I got the "greet them, treat them and, street them" kind of medical care all clinicians fall into now and then on a regular basis. So after numerous attempts of talking with her about my care concerns and not seeing things change I said the short version of the Serenity Prayer, which is "F--- it!", and found another provider who is wonderful. She treats me like a real person. I am a real person! She asks what is going on in my life and my numbers, while still important, are not the heart and soul of every visit.

I have had several other medical conditions overlooked because of my being a "good patient" that I had to handle myself. But I am lucky because I am an AIDS certified Nurse Practitioner and knew how to get the help I needed. What about the average person with HIV/AIDS without that sort of background? What happens to them? I assume they fall through the clinical cracks and suffer.

Maybe that is the lesson here: NEVER BE A GOOD PATIENT!

Read another story about an HIV patient who’s very aware of the relationship with his doctor.

Thanks to Richard for his post, at Richard’s POZ blog.

Friday, January 22, 2010

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.