The only problem: Impersonal hospital care

Dr. Dena Rifkin's plaint:
A close family member was recently hospitalized after nearly collapsing at home. He was promptly checked in, and an EKG was done within 15 minutes. He was given a bar-coded armband, his pain level was assessed, blood was drawn, X-rays and stress tests were performed, and he was discharged 24 hours later with a revised medication list after being offered a pneumonia vaccine and an opportunity to fill out a living will.

The only problem was an utter lack of human attention. An E.R. physician admitted him to a hospital service that rapidly evaluates patients for potential heart attacks. No one noted the blood tests that suggested severe dehydration or took enough history to figure out why he might be fatigued.

A doctor was present for a few minutes at the beginning of his stay, and fewer the next day. Even my presence, as a family member and physician, did not change the cursory attitude of the doctors and nurses we met.

Yet his hospitalization met all the current standards for quality care.

As a profession, we are paying attention to the details of medical errors – to ambiguous chart abbreviations, to vaccination practices and hand-washing and many other important, or at least quantifiable, matters.

But as we bustle from one well-documented chart to the next, no one is counting whether we are still paying attention to the human beings. No one is counting whether we admit that the best source of information, the best protection from medical error, the best opportunity to make a difference – that all of these things have been here all along.

The answers are with the patients, and we must remember the unquantifiable value of asking the right questions.

Advice: Find a doctor who will take time with you.

Read another story about impersonal hospital care. Thanks to Dr. Rifkin for the source story in the NY Times of Nov. 17.

After another week on dialysis he called back: Kidney donation

The first patient to list himself publicly on MatchingDonors.com was Bob Hickey, a psychologist in his mid-fifties who'd learned he had kidney cancer. At first, he'd done what his doctor told him to do: he went on dialysis, signed up on the official waiting list for a cadaver kidney in his region, and hoped that he would reach the top of the list before he died. His transplant center told him that he should expect to wait about four years.

On dialysis, you are attached to a machine for several hours at a time, usually three or four times a week, while the machine siphons off all your blood, cleans it of toxins, and injects it back into your body. Often the process leaves you too exhausted to work, or do much of anything besides recover. After four and a half years of dialysis, Bob, still waiting on the list, decided he'd had enough. He would rather die.

Less than a month later, he saw a newspaper article about a new company starting up – MatchingDonors. Bob phoned them, and the head of the company told him the service cost $295 a month, or $595 for life. Bob told him he was a carpetbagger and a rip-off and hung up. After another week of dialysis, he called back and signed on. Within a month, he had dozens of offers.

He screened them into a smaller set, and picked one at random: Rob Smitty of Chattanooga, Tennessee. The two men talked on the phone, and agreed. Bob was so excited that he jumped in his car and drove from Vail to Denver, more than 100 miles, to the transplant center to deliver the good news. The transplant center staff cautioned him, but accepted Rob as a donor.

Surgeons performed the transplant in October, 2004. Ever since, Bob has made kidneys his life's work. He advises people who are considering transplants. He raises money to compensate donors for expenses and lost wages. (Other forms of compensation for donors are illegal.) And he's fighting the kidney establishment on several fronts.

Advice: Read the stories at MatchingDonors.com

Read another story about a kidney match through MatchingDonors. Thanks to Larissa MacFarquhar for the source story in the New Yorker of July 27.

He doesn't call, he doesn't write: Patient Family Advisory Councils for medical groups

I got an automatic phone call from my pharmacy the other day, telling me that my prescription was ready for pick-up. And an automatic phone call from our temple president about upcoming events I might want to participate in.

But during the current H1N1 scare, I haven't received an email from my doctor telling me what to do. He doesn't call, he doesn't write – does he care about me? And my daughter hasn't received an email or pro-active call from her pediatrician about it either. Why not?

There are many reasons; perhaps one of them is so obvious that no one sees it: No one told them to. No consumer advisory group said, "Doctor, in this day and age of free email, where the vast majority of your patients have an email address, it's time for you to advise them on vaccinations, prevention and treatment for H1N1 by email." Indeed, that would probably save a lot of time and hassle for the doctors' administrative staff, who wouldn't need to explain the same information for the thousandth time.

Hospitals have made many innovative changes as a result of suggestions by their patient/family advisory councils. We should encourage medical group practices to form advisory councils and hear their ideas. The time they save could be their own.

Advice: Write a note about this to your doctor and ask the doctor's office manager to make a suggestion box and put your note in it.

Read a patient/family advisory council story.

Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!

Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.

At least they have a line to wait in: A death from lack of insurance

Sue was a 31-year-old patient of Ob-Gyn Dr. Linda Harris, in Oregon, as Nicholas Kristof writes in today's New York Times. Sue was a single mom who worked hard, sometimes two jobs at a time. Her jobs never provided health insurance, and she couldn't afford to splurge on herself to get gynecological check-ups. She went without a Pap smear for more than 12 years, though annual Pap smears are recommended. Even when she began bleeding and suffering abdominal pain, she was reluctant to see a doctor because she couldn't afford it.

She eventually sought help from a hospital's emergency room, and then a public clinic where Dr. Harris works, only to learn that she had advanced cervical cancer. Three months later, she died. Her daughter was 13.

Her death didn't have to happen. Cervical cancer has a long pre-invasive stage that can be readily detected by a Pap smear, and treated with a relatively minor procedure.

"People talk about waiting lines in Canada," Dr. Harris says, adding, "Well, at least they have a line to wait in."

As Kristof notes, national health reform would cost about as much each year as a year of our continued fighting in Afghanistan. Both purport to save lives. Viewed with the cold, hard lens of cost-effectiveness, financial prudence would clearly lead us to prefer saving the 45,000 people like Sue whose lives were lost from lack of insurance, according to a Harvard study published in September, over the very few who die from terrorist acts each year.

Advice: Share this with conservative legislators who are concerned about our government's return on its investment.

Read a much happier story about a lack of insurance. Thanks to Nicholas Kristof for the source story.

A pinstriped evangelist: V.A. Secretary Shinseki's advocacy for veterans

The New York Times wrote today that Eric "Shinseki has been criss-crossing the country as Pres. Obama's pinstriped evangelist for veterans' care, raising concerns about a coming tide of post-traumatic stress cases, traumatic brain juries and other physical and psychological scars of battle."

He says, "What's natural for me is trying to tell the story that soldiers need told. It's not my story, it's their story." Nonetheless, his own story of losing a part of his foot in combat in Vietnam is instructive. He says, "All of us who went through combat, we were carrying a little baggage from the experience, the stress."

A former general, Shinseki won notoriety by speaking truth to power, warning Pres. Bush of a shortage of American troops in Iraq. Now continuing to state the truth as he sees it, he has requested what would be the largest single-year increase in the budget of the Department of Veterans Affairs in 30 years.

Advice: Share this story with a vet, and remind them that help may be available if they want it.

Read a story about our veterans. Thanks to James Dao and Thom Shanker for the source story.

The suffering they save may be their own: A registry for medical devices in the House’s health reform bill

The U.S. House of Representatives passed the healthcare reform bill (H.R. 3962) over the weekend - an historic achievement. The long bill is being analyzed; one underappreciated piece calls for a national registry for medical devices, in Section 2571, on page 1501.

People like Stephen Csengeri will benefit. The registry will allow for common defects in a specific device to be discovered more quickly, in time to dissuade other patients from using them and suffering similar results.

Bravo to the members of Congress who voted for the bill! The suffering they save may be their own…

Advice to those considering an implanted medical device: For now, you'll need to research the specific make and model of the device on the Internet to learn of any common problems, and ask your surgeon about them.

Read a story about a medical device error.

The alternative was to have no insurance: Betting on good health

Carl Arrington, 58, is a free-lance writer and chef in New York. When his company closed shop nine years ago, at first he chose to pay for extended coverage under COBRA. But the high premiums forced him into a difficult decision: he dropped the insurance.

"The alternative was to have no insurance, which was so scary in the beginning," he said. "And then I decided, look, when you have insurance you're betting that you're going to get sick."

He decided to change his lifestyle. He stopped eating meat, and cut excess sugar from his diet. He began to exercise, eventually losing 40 pounds.

He still sees his physician annually for checkups, but he avoids screening tests like colonoscopies. If doctors discovered something that needed further treatment, he said, he probably could not afford it anyway.

"I am in control of my health, and I'm not afraid of dying. What more do you need?" he asks.

Advice: Stay healthy – and work for universal health insurance.

Read another story about a limitation of the COBRA safety net.

Thanks to Karen Barrow for the source article in the New York Times of Nov. 4, and to Alex di Suvero.

Outside the chemo treatment room: Insurance denials

From Nicholas Kristof's column:

I regularly receive heartbreaking emails from readers simultaneously combating the predation of disease and insurers. One correspondent, Linda, told me how she had been diagnosed earlier this year with abdominal and bladder cancer – leading to battles with her insurance company.

"I will never forget standing outside the chemo treatment room knowing that the medication needed to save my life was only a few feet away, but that because I had private insurance it wasn't available to me," Linda wrote. "I read a comment from someone saying that they didn't want a faceless government bureaucrat deciding if they would or would not get treatment. Well, a faceless bureaucrat from my private insurance made the decision that I wouldn't get treatment and that I wasn't worth saving."

Advice: Insist that your representatives in Congress vote for a public plan that will cover people like Linda.

Read another story on an insurer’s denial of chemotherapy treatment.

Thanks to Nicholas Kristof for the source column in today's New York Times.

I can’t hear you while I’m listening: Communicating with your doctor

A stethoscope amplifies inaudible heart and lung sounds in a very satisfying way. If, however, the owner of the organs under evaluation decides to make a comment during the exam, what results is a painfully loud, unintelligible blast of noise directly into the doctor's head.

It was during such an interruption almost 30 years ago that Dr. Richard Baron, a Phiadelphia internist, grumbled at his patient: "Shhh. I can't hear you while I'm listening." The phrase has undoubtedly been said by many, but Dr. Baron was the one with the wit to stop and laugh (and reflect at length in a classic medical article), realizing that he had enunciated in pure koan form probably the single greatest tension in modern medical practice.

Against the siren song of all those beautiful instruments and machines, whatever the patient has to say is sometimes just an annoying interruption.

This is a caution about the use of technology. It's also a caution to patient advocates, to ensure we don't get in the way of the doctor's listening to the patient.

Advice: Find a doctor who listens to you – and do your part by enabling him or her to listen fully, in every sense of the word.

Read another physician listening story. Thanks to Dr. Abigail Zuger for the source story in the New York Times on Oct. 27.

Before he had health insurance: The public option in health insurance reform

On this scary Halloween, it's comforting to see that the U.S. House of Representatives is including a public option in its healthcare reform bill.

The House bill, if it passes, could save the lives of many very ill people – like Fred Holliday. With insurance coverage for a physical exam, Fred might have received prompt detection and treatment.

Dr. Rahul Parikh describes what had happened instead, as told to him by Fred's widow, Regina Holliday:

Fred Holliday developed the early symptoms of his disease-fatigue, weight loss and occasional blood in his urine - before he had health insurance. In late 2008, his insurance kicked in after he got a job at American University teaching film studies. Last January, he developed low back pain. He went to see his doctor multiple times. Each time, she prescribed pain medication, but his pain worsened. Regina wondered: if Fred just had muscle pain, then why the night sweats? Why the blood tinged urine? Why didn't his clothes fit him anymore? Still, Fred's doctor didn't reconsider her diagnosis and treatment.

His pain worsened. In March, Regina demanded more. Fred's doctor ordered an MRI of his back. Three days later, they got a call telling them that he had "shadowing over his kidneys." What that meant wasn't entirely clear, but the next thing Fred and Regina knew, they were in the office of a Maryland oncologist, who admitted them to a hospital in Silver Spring for further tests.

On Friday, March 27 around 11 am, Regina was at work when Fred called. He was crying. "I think the doctor just told me I have cancer," he managed to tell her.

What exactly did the doctor say? Fred remembered being told that he had a growth on his kidneys. Regina rushed into see the doctor, but he had left town for the weekend. They had to wait until the next day before another doctor (not an oncologist) tried to clarify his diagnosis: it looked like he had stage IV metastatic renal cell carcinoma. That jumble of words didn't make any sense. Regina went onto the Internet. Wikipedia turned out to be more helpful than Fred's doctors.

When their oncologist returned, he was curt and often distracted by his cell phone. He didn't like Regina's detailed questions, telling Fred that, "If Miss type-A personality wants me to answer her questions, she can come to my office hours."

In retrospect, Regina believes that if Fred's doctor had been clear about his prognosis from the beginning, he may have made the decision to stop fighting sooner. Instead, he informed him of how he could fight: surgeries, radiation, and chemotherapy. So he decided he needed more advanced care than what Holy Cross could provide.

Patient transfers between hospitals are normally the responsibility of doctors who work there. The hospital's doctors, however, told her they had not been able to find another center willing to accept him. So Regina contacted her own internist, who sat on the board of directors at a hospital in Bethesda. After hearing Fred's story, he pulled strings and arranged a transfer.

The Hollidays arrived at there four weeks after Fred's diagnosis. The first thing they learned was that he needed surgery to repair a broken hip - which happened after an orderly at the first hospital bumped him into a wall while he was moving Fred on a gurney. Fred had been complaining of severe hip pain for two weeks, but nobody there had followed up on it. All it would have taken was an x-ray.

After surgery, his new oncologist ordered a chemotherapy drug called Sutent. While his health insurer approved the drug, Fred's doctor told Regina that the pharmacy refused to order it. At $40,000 for a 28-day supply, it was too expensive. "Sometimes this happens," Fred's doctor told her. So Regina had the drug mailed home, picked it up, tucked it safely into a fanny pack, and dispensed a dose to her husband each day.

Fred's cancer advanced. He still couldn't walk. He had become incontinent. The doctors decided to transfer him to a rehabilitation center with the goal of getting him to walk again. Once he was there, Regina’s duties as his caregiver intensified. She learned where the center's storage closets were so she could collect fresh sheets and change them herself. She emptied his trash, and changed and disposed of his bedpans.

While he was in the hospital, Fred required blood transfusions every 10-14 days. Regina knew when he needed them because he would begin to get very tired, eat, move, and talk less. One afternoon, this is just what happened. At the hospital, it was easy to ask the nurse to get a blood test to know just how low his counts were. In the rehab center, they only did blood tests once every morning, no exceptions. So Fred suffered until morning came and his test confirmed what he and Regina knew the day before.

Fred would had to be re-hospitalized. Fred continued to deteriorate. It quickly became a question of how much longer to fight. On May 19th, he was moved to hospice care to get his pain under control and on June 11th, he went home. On June 17th, less than three months after he was diagnosed with cancer, Fred Holliday died at home. Ironically, this was the same day that the United States Senate began debating health care reform.

Advice: Call your congressman and ask them to support health insurance reform with a strong public option. Commercial insurers might prefer not to insure someone like Fred - or like you.

Read another story about the lack of health insurance. Thanks to Dr. Rahul Parikh for the source blogpost, and e-patient Dave Bronkart.

Magnificent at times: Jeremiah Mead & advances in respiratory research

In the famous joke by Woody Allen, two Jewish women are commenting on the food at a resort in the Catskill Mountains. One says, "The food is terrible here." The other responds sadly, "And the portions are so small!"

I often feel that my comments on healthcare are similar: It's so bad. And there's way too little of it! Yet sometimes I realize that our healthcare is also magnificent at times, and life-saving – as in the healthy birth of my son, 19 years ago.

My wife started labor nine weeks prematurely. Doctors were able to stop the labor from progressing, and gave my son the drug beta dimethasone to speed the maturation of his lungs. In a fetus' development in the third trimester, the walls of the lungs initially stick together, and can’t inflate with air, until a chemical surfactant is released. At that point, the lungs can inflate and deflate appropriately, readying the baby to breathe upon birth.

If a baby is born prematurely, before the surfactant changes the lungs in this way, respiratory distress syndrome can result, often fatally. In the past, this caused the deaths of 50,000 premature babies each year.

My wife got the drug in time, and it somehow made its way to Neil's lungs, triggering the release of the surfactant, before he was born a few days later. He didn't get RDS, and he didn't need a ventilator. He has long been in excellent health, and he's bigger and more muscular than me now.

Dr. Jeremiah Mead was the scientist who discovered the role of the surfactant, and opened the way for a series of discoveries that now make RDS much less frequent. I learned this only in reading his obituary; he died at age 88 in mid-August.

In a colleague's words, "his major contribution is that he set the agenda in respiratory mechanics, and posed the questions that everyone else picked up."

Read another NICU story.

Thanks to Emma Stickgold for the source article in the Boston Globe of August 18.

I freak out when he has a runny nose: PTSD in NICU preemies' parents

Kim Roscoe's son Jaxon was born three months early, weighing only two and a half pounds. For nine days he did exceedingly well in the NICU (neonatal intensive care unit). Then, on Day 10 he went into respiratory and kidney failure, and his body had swollen beyond recognition. "He was hooked up to ventilators, his skin was turning black, the alarms kept dinging over and over," Kim recalls.

Jaxon is 16 months old now, home with his family. In the NICU for 186 days, he survived several near-death episodes.

During the six-month ordeal, his mother had constant nightmares. She became angry at the world, and so jumpy that she once thought that a supermarket scanner was one of Jaxon's monitors going off.

About three months after Jaxon's birth, she asked to see a psychiatrist. She received a diagnosis of PTSD (post-traumatic stress disorder). Doctors are increasingly recognizing PTSD among parents of premature infants in prolonged intensive care, according to a recent study in the journal Psychosomatics.

"The NICU was very much like a war zone, with the alarms, the noises, and death and sickness," Kim said. "You don't know who's going to die and who will go home healthy."

Experts say parents of NICU infants experience multiple traumas: the shockingly early birth itself, traumatic medical procedures and life-threatening events, and hearing very bad news that can keep coming.

Kim says that now she's coping with great anxiety about Jaxon, even now: "I still freak out if he has a runny nose. And when he gets a fever, I'm back in the NICU."

Advice to stressed parents of a NICU preemie: Keep in mind that there are very happy endings. My very healthy son just entered college, 19 years after his three-week stay in a NICU. Contact the March of Dimes NICU Family Support program, which offers psychological support to parents in 74 hospitals nationwide.

Read another NICU story.

Thanks to Laurie Tarkan for the source article in the New York Times of August 25.

Turning patients into scientists: Open source research like the LAM Treatment Alliance

After Amy Farber learned she had the rare and fatal disease called LAM (“lymphangioleiomyomatosis”) in 2005, she became determined to increase and speed up research into her illness, with the hope of finding a cure in her lifetime.

Now 39, she was a law student with a doctorate in anthropology, about to start a family. She quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.

With the help of Frank Moss’ Media Lab at the Massachusetts Institute of Technology (MIT), she created LAMsight, a Website that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Amy Farber says this will empower patients to contribute, ask questions, and help lead the way to discoveries. Frank Moss agrees, adding that patients’ everyday experiences in living with the disease can generate new hypotheses and avenues for research. “We’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients,” he says. Supporters of this model call it “crowd sourcing” or “open source research,” and praise its democratization of research.

She hopes her website will become the largest database of active LAM patients. More than 100 registered users on five continents are already using it.

Advice to patients with rare diseases: Search the Web to see if a similar website is speeding research into your disease.

Read another story about PatientsLikeMe, a similar website for other rare diseases.

Thanks to Sarah Arnquist for the source article in the New York Times of August 26.

I was lucky: Lance Armstrong's pre-existing condition

Lance Armstrong's letter of October 2, 2009:
Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don't know is that at the time, I didn't have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it's a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American.
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We'll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate.

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.

Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.

It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.

-Lance and the LIVESTRONG Action Team

Advice: Please sign the petition and forward it along to your friends and family.

Read another Lance Armstrong story. Thanks to Hari Khalsa for forwarding the email.

Write on the incision site: Wrong site wrist/finger surgery

Here is an example of what has been reported and the initial changes made as a result of Massachusetts hospitals' analyses of "serious reportable events," as required in the new Chapter 305 state law.

A Spanish speaking only patient was admitted for surgery to release a left trigger finger, a condition where the finger catches in a bent position and straightens with a snap; instead she had a carpal tunnel release, a completely different operation on the wrist and not the finger.
This mistake was not discovered by the team in the operating room, but by the doctor when he returned to his office and looked at the patient's medical record.

To avoid this error from recurring, the hospital changed its policy from having the surgeon sign the side of operation to requiring the surgeon to sign the actual incision site. Also in this case, not all team members participated in the time out. In response, two more important issues were addressed by the facility: first, the policy was changed to require the presence of an interpreter for non-English speaking patients, so they could answer questions about the operation and verify the site, as required by the Universal protocol; and second, a revised hand-off routine was instituted to accommodate changes in staff immediately before and during the operation.

Advice to surgical patients: Have the surgeon mark the incision site, not just the correct side of your body – or mark it yourself.

Kudos to Dr. Stancil Riley, Tracy Gay of the Betsy Lehman Center, and Elizabeth Daake of DPH to helping this happen and making this available at the Massachusetts Department of Public Health's website.

Read another wrong-site surgery story.

Visiting Hours Are NOT Over: Innovative Patient/Family Council Hospitals in Massachusetts

In my role as President of the Consumer Health Quality Council, I had the privilege of participating in a training session for Massachusetts hospitals yesterday on starting their patient/family advisory councils. These speakers mentioned specific improvements in partnering with patients that their councils have already inspired:

Susan Shaw of Children’s Hospital of Boston described many changes, e.g., the welcoming patient guide, the redesign of Family Sleep Space, and "Executive Family Walk Rounds," among others.

Karen Conley described how South Shore Hospital has greatly extended its visiting hours, focusing on the Emergency Department, Intensive Care Units (ICUs) and PACU. In the past, every evening the loudspeaker would intone, "Visiting Hours Are Now Over," forcing family members to leave their ill, scared, and vulnerable loved ones at their moment of greatest need. After this announcement was eliminated, the number of formal grievances fell by 94% from one year to the next! South Shore Hospital began using family-initiated rapid response teams in June (I hope to report more on this soon) and has several other very exciting ideas in development from its council.

At my visit a few weeks ago to the pediatric family advisory council of Dana Farber Cancer Institute, Maureen Connor's team mentioned that parents had asked for and received a washer and dryer on the kids' floor so that the parents themselves could help keep their kids' bedding and clothes clean.

BRAVO TO THESE PIONEERING HOSPITALS! It's worth noting that none of these ideas costs hospitals much, if any, money, and yet mean a lot to patients and their families. I hope patients will tell their primary care providers and friends about these practices, so more patients get their care at those patient-friendly hospitals.

At the Consumer Health Quality Council of Health Care for All, we're asking Massachusetts hospitals to send us their plans as they complete them by the end of the month, so we can learn about and publicize more of the innovative ways that hospitals are becoming more patient-friendly.

Advice to patient advocates: Steer your clients to hospitals with productive and imaginative Patient/Family Advisory Councils.

Read our Council's testimony on the new Chapter 305 law that mandates these patient/family advisory councils. Thanks to Paula Griswold and Effie Brickman of the Massachusetts Coalition for the Prevention of Medical Errors, and Tracy Gay of the Betsy Lehman Center, for organizing the series of conference calls as training sessions. Thanks to Marlene Fondrick of the Institute for Family-Centered Care for sharing IFFC's knowledge and resources in the calls. Thanks for the legwork by Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss of the Consumer Health Quality Council's work group on Patient/Family Advisory Councils.

For all of them on this Jewish New Year, may they be written in the Book of Life.

David, Goliath, Max Baucus, and Nikki White: The Senate Finance Committee's plan for national health insurance

Nikki White was a slim, young and athletic college graduate. She had a job, and health insurance. At 21, she had been diagnosed with systematic lupus erythematosus, a chronic inflammatory disease that gradually weakened her to the point where she could not work. When she lost her job, she lost her health insurance. She tried everything to get medical care, writing letters for months, but no insurance company would accept her because of her costly pre-existing condition.

Finally, she collapsed when at her home in Tennessee, and was rushed to the Emergency Department. She received plenty of free care, including six months in an intensive care unit (costing taxpayers hundreds of thousands of dollars). It was far too late, and she died in 2006 at age 32.

Every 12 minutes, an American like Nikki dies. You read it right, and I’ve checked the math. That's the key finding of a study that determined that 45,000 Americans die each year from the lack of health insurance.

The same day the study was released, the value of insurance company stocks rose on the news that Sen. Max Baucus submitted the Finance Committee's health insurance plan. Investors believe that Baucus' scheme would be highly profitable for insurers, who will gain millions of paying customers. Insurers would not have to compete against a public program. Instead, these highly experienced, financially stable Goliaths would compete against nonprofit co-ops, i.e., young start-ups. Insurers are adept at cherry-picking the healthiest, least expensive people to insure, likely leaving the sicker, more costly uninsured people for the nonprofit co-ops. It's easy to guess who'll profit in that marketplace. That's why insurance stocks rose.

Here in Massachusetts, we don't have this problem. Here, Nikki would be alive. We have some excellent insurers – and near-universal health insurance.

Advice to non-Massachusetts residents: Move here. If you don't want to do that, call your senator or congressman and insist they support a public option for health insurance.

Read how universal health insurance saved someone’s life. Thanks to Nicholas Kristof for the source story in the New York Times of Sept. 13, and Dr. Andrew Wilper et al in the December 2009 [sic] issue of the American Journal of Public Health.

If you can fix me, please do: A living will

Here's Dr. John Dykers Jr.'s end of life plan, in a letter to Annie's Mailbox:

I'm glad you brought up the end-of-life plan dilemma faced by 'Aunt Thelma, Uncle John, and my Marie.’'I am a doctor, and my patients have embraced my own end-of-life plan as follows:

"If you can fix me, please do. If you can't fix me, please help me avoid pain, fear, lack of air, hunger, nausea, thirst, loss of dignity, and prolonging the dying process. I understand it might take a few days for you to figure out whether you can fix me or not."

This format helps facilitate conversation between generations without the feeling of abandonment. Most of us old folks don't fear death as much as the process of dying or prolonged disability.

Advice: Send this to your parents, suggesting it as a default living will. If they want to revise or discuss it, so much the better.

Read another living will story. Thanks to Dr. Dykers, whose letter appeared in the Boston Globe on Sept. 9.

The best way to spend September 11: Rapid response teams

Eight years later, today on Sept. 11, I still feel the impact of the terrorist attacks.

I had the pleasure of spending much of the day in planning how to greatly improve the health of people in Eastern Massachusetts. Babra Rabson of Massachusetts Health Quality Partners and Prof. Stuart Altman are leading a large-scale collaborative called Aligning Forces for Quality (AF4Q), and I'm participating on its Leadership Team.

In today's meeting we discussed broad goals we might pursue. My own vote was to encourage the use of rapid response teams in hospitals to prevent cardiac arrests in the hospital. Cardiac arrests in the hospital are very common; there are hundreds of thousands of them in the US each year, according to an article by Dr. Kerry Voorhis and Dr. Tina Willis in Pediatric Clinics of North America in 2009. Resuscitation attempts are made on roughly 30 hospital inpatients a day in Massachusetts, but they usually fail to save the patient's life. Warning signs like a change in the breathing rate, blood pressure, or confusion usually appear several hours before the cardiac arrest. Doctors and nurses can be trained on the hospital's process for intervening before a resuscitation (a code team) is needed. Family members can be informed that they can urge a rapid response team if they notice their family member's condition has deteriorated suddenly. This is a new law in Massachusetts; it's a requirement by the Joint Commission on Accreditation of Healthcare Organizations, and is a recommendation of the Institute for Healthcare Improvement.

The wide use of these rapid response teams should save many people's lives. The cost of doing so is slight. There may even be a financial reason to do this, as surviving inpatients will live on to keep paying insurance premiums.

The leaders of the AF4Q collaborative will choose an ambitious goal that will save lives of Massachusetts residents. They may well choose a different focus. In any event, I feel grateful to contribute to the discussion, and I feel this was the best way to spend September 11.

Advice for September 11: Spend the day in community service to make life better.

Read another story about rapid response teams.

Thanks to Helen Haskell of Mothers Against Medical Errors for emailing the source articles, and for inspiring South Carolina's Lewis Blackman Act.

Now that he has fallen: Teddy Kennedy's contribution

As author John James says, "I remember the days early in my adult life when I believed that a more socialized system of healthcare was overdue in America. Ted Kennedy was a hero of that vision, and I bought one of his books. Once I became a 'responsible' adult my personal wellbeing trumped any social goals I had at a more equitable healthcare system...until that healthcare system took my son's life."

Ted Kennedy starts his 1972 book: In Critical Condition - The Crisis in America's Health Care with this:

"I am shocked to find that we in America have created a health care system that can be so callous to human suffering, so intent on high salaries and profits, and so unconcerned for the needs of our people. American families, regardless of income, are offered health care of uncertain quality, at inflated prices...Our system especially victimizes Americans whose age, health, or low income leaves them less able to fight their way into the health care system...It is an industry which strongly protects the profits but only weakly protects the healing and rights of people."

John James continues, "This was published 37 years ago and the pages on my copy of this book are turned a dingy yellow. Sadly, very sadly, the words of Senator Kennedy are more true today than they were 37 years ago. He ran the good race, but we must carry on now that he has fallen and the finish line is more distant than ever."


I'm also missing Teddy, who I increasingly realize was one of our greatest public health heroes. Here is a list of the healthcare laws he was influential in shaping, courtesy of the Massachusetts Hospital Association's Monday Report: The National Community Health Center Program; The Family Protection of Medicine Act; Meals on Wheels and the Women, Infants, and Children Nutrition Program; National Military Child Care Act; Ryan White CARE Act; Mammography Quality Standards Act; Human Services Reauthorization Act; Health Insurance Portability and Accountability Act (HIPAA); the Mental Health Parity Act; Children's Health Insurance Program; Minority Health and Health Disparities Research and Education Act; Pediatric Graduate Medical Education Act; Family Opportunity Act; and Genetic Information Nondiscrimination Act. In addition was his sustained strong support of funding for cancer research.

Advice to public health advocates: Take heart from Teddy's example.

Read another story about Teddy’s encounter with cancer.

We have become the ones: The passing of Sen. Edward Kennedy

Poverty is the biggest risk factor for poor health: poor people live shorter lives, with more disease and disabilities, than the rest of us. So for those who are passionate about improving public health, the loss of Teddy Kennedy is a particularly great setback.

He was influential in passing the State Children's Health Insurance Program (SCHIP) and the Americans with Disabilities Act, and raising the minimum wage, to name only three examples of laws that brought about big public health gains.

His compassion, tenacity, and joy, and his record of achievement, make him my hero.

With his passing, as Caroline Kennedy Schlossberg said in her eulogy, "we have become the ones who have to do all the things he would have done -- for us, for each other and for our country."

Read a blog post from last year aboutTeddy Kennedy’s final year.

Using himself as an example: Plaintiff Howard Engle's Progeny

Dr. Howard Engle passed away on July 22 at age 89, from chronic obstructive pulmonary disease. He had smoked multiple packs of cigarettes a day since college. Though he tried many times to quit, he never succeeded, and continued to smoke until his death.

His medical specialty had been pediatric neurology, and he frequently worked with cerebral palsy patients. He preached to his patients about the dangers of smoking, using himself as an example. "He wanted to teach people, especially kids, that smoking is not a good habit," said his son David.

Among his patients in the 1980s were the children of two medical malpractice lawyers, Stanley and Susan Rosenblatt. In 1991, the Rosenblatts brought a class-action suit against tobacco companies on behalf of flight attendants who had inhaled secondhand smoke, winning a settlement that cost the companies $300 million. Dr. Engle took a keen interest in the case.

Because he was a smoker with emphysema who wished to publicize the addictive nature of smoking, he agreed to become the lead plaintiff in a second class action suit, filed by the Rosenblatts in 1994. In 2000, the plaintiffs received the largest punitive award ever decided by a jury, for $145 billion. An appeals court voided the award as excessive and said the class of plaintiffs was too disparate. Later, the Florida Supreme Court let that ruling stand, though it allowed individuals to bring suit. Thousands of individuals have done so, and courts are now beginning to decide their cases – which are known as the Engle Progeny.

Advice: Use your standing and your personal network to fight for public health. Sometimes you have to sue the B*ST*RDS.

Read a very different ">class action lawsuit story.

Thanks to Bruce Weber for the source obituary in the Boston Globe of July 25.

Intervening before there’s drama: Rapid Response Teams

"A trigger [for a rapid response team] is not about excitement and drama; it's about intervening before there's drama," said Jeanne Quinn, a senior nurse on a unit for post-surgery and trauma patients. Minutes earlier, Judy Wagoner, a 29-year-old nurse with 2.5 years experience, had activated a trigger when her patient's blood pressure plunged to 56.

As the senior nurse on the floor, Jeanne responded and helped Judy gradually raise Carol Emerson's pressure back into the 100s. The team ordered an electrocardiogram to rule out underlying heart problems and a blood transfusion, and kept the patient an extra night. About 80% of the nurses on the floor have less than two years of experience, while Jeanne has 15.

No one knows for sure if early intervention helped Carol, who was in the hospital so surgeons could repair broken bones in her left arm, avoid cardiac arrest. And Judy said she would have asked for Jeanne's help even before the new rules.

But doctors believe the key to reducing patient mortality is to intervene at the first sign of trouble, before the patient "[cardiac] arrests," an emergency where the heart or lungs — or both— shut down.

Dr. Michael Howell, an intensive care specialist, hopes the Rapid Response team will prevent delays like one he described a few years ago to the Beth Israel Deaconess board of directors: Doctors admitted an elderly man to the hospital for gastric bleeding. When his systolic blood pressure dipped into the 80s, his nurse and an intern gave him intravenous fluids to push it back up to normal range. His pressure climbed back into normal range. Over the next eight hours, his blood pressure kept falling, and they kept pumping in fluids. Low blood pressure is generally not life threatening until it dips into the 70s or 60s. But they failed to recognize that the subtler decline masked a more serious underlying problem: massive stomach bleeding. The next morning, a senior doctor did, and transferred the patient to the ICU, which has the staffing expertise and equipment to intervene more rapidly. But it was too late.

"I don't know that we would have saved him," Dr. Howell said. "But it's absolutely possible."

Advice to family members of hospitalized patients: Find out how the hospital activates a rapid response team.

Read about Massachusetts legislation enabling family members to activate rapid response methods in hospitals.

Thanks to Liz Kowalczyk for the source story in the Boston Globe of Nov. 27, 2005.

What it could and could not do: Universal health care through the British National Health Service

Sarah Lyall's story:
As an American who lives in Britain, occasionally writes about the health service, and uses public and private medicine here (as well as back home, occasionally), I have seen firsthand the arguments from all sides.

For me, the Health Service was a godsend when my husband suffered a severe stroke in the 1990s. He got exemplary critical care; I did not get a bill.

It was only in the aftermath – when I learned that, unusually in Britain, my husband's job came with private insurance – that I came to realize what it could and could not do. A little over one in ten Britons have some sort of private supplemental insurance; others pick and choose when to use the National Health Service and when to pay out of pocket for the top specialists or speedier care.

Told my husband needed a sophisticated blood test from a particular doctor, I telephoned the office, only to be told there was a four-month wait. "But I'm a private patient," I said. "Then we can see you tomorrow," the secretary said.

We should create a system in the U.S. that covers everyone, and gives everyone a choice or public or private insurance. That would be a huge improvement for many millions, though still far from perfect, like in Britain.

Thanks to Sarah Lyall for the source article in the Sunday New York Times.

I've got the upper hand: The Cure and treatment for cancer

Michelle Grant-Epstein is a 52-year-old mother of three in Framingham, Massachusetts. Advanced colon cancer, diagnosed in 2005, had spread to an ovary, requiring extensive surgery and chemotherapy. Here's her story:

When I was first diagnosed, the doctors said my disease was treatable, but we just don't have a cure now. It was hard to hear.

I'm co-habiting with my cancer, and as long as I've got the upper hand, that’s OK. I'm a fully functional adult [exercising at home, spending time with family and friends, and working part-time at a local library].

Do I wish for a cure? Absolutely! But I know that it's complicated and each cancer is different. For now, I'm grateful for the drugs that are controlling my cancer, and I hope they're still working.

Advice: Live as fully as you can every day.

Read a thoughtful journalist's story about his life after prostate cancer.

Thanks to Michelle, whose story appeared in the Fall/Winter 2008 issue of Dana-Farber’s newsletter, Paths of Progress. This is an excerpt from the article about Michelle and two other cancer survivors who are patients of Dr. Robert Mayer.

I reject that categorization: Life during dialysis

Frank Sietzen, Jr.'s story:
Daniel Asa Rose says dialysis leaves patients "with an enervated excuse for a life." As one of the hundreds of thousands of Americans undergoing hemodialysis, I reject that categorization.

Dialysis isn't easy – there is pain each session when a pair of 15-gauge needles are inserted in my arm and removed three hours later, but if a patient follows the appropriate diet and fluid restrictions, the remaining part of life is no different from anyone else's.

I have energy and a zest for life, swim and exercise every day, and am on the transplant list (which involves a five- to seven-year wait in my region). I am often told how "well" I look.

My life – which I call my 65% life since dialysis and related care consume about a third of my time – is a life well worth living, especially considering the alternative.

Advice: Live a life well worth living, like Frank.

Read a story about a kidney transplant patient's choices after a transplant.

Thanks to the New York Times for printing Frank's letter to the editor on July 17.

Mr. and Mrs. Republican: A lawmaker's response to their hospital acquired infection

Leo and Rita Pepino were married for almost 60 years. "She was my life," Leo says.

Rita died from bone cancer in 2005, after battling two other cancers. She was affectionately known in New Hampshire as "Mrs. Republican" for her political activism. Her husband Leo was the former Speaker of the New Hampshire House of Representatives.

Rita had acquired several painful infections while in the hospital, getting sicker from the place that was supposed to make her well, Leo said.

"Every time she went to the hospital, she always got an infection," he said. He got one, too, years ago from a different hospital when he had back surgery.

Also a Republican, he kept his word after Rita died, helping to marshal through a new law requiring New Hampshire hospitals to report to the state for public release their rates for the three most serious hospital-acquired infections.

New Hampshire Gov. John Lynch signed the bill into law in 2006, "in memory of Rita." However, public reporting has lagged: the state still does not publish the rates of individual hospitals' infections.

A year ago, Leo vowed at age 81 to run again for the seat he lost last time around to make sure consumers get information to compare hospital infection rates. It's for Rita, he said.

Advice to political activists: Be vigilant to ensure your new patient safety laws are implemented faithfully after they become law.

Read another story about Massachusetts'new law on reporting hospital acquired infections.

Thanks to Helen Haskell, and Nancy West for the source article in the New Hampshire Sunday News of August 10, 2008.

From three different insurers: Overlapping insurance coverage

Today we received another health insurance card in the mail for my 19-year-old son, and I realized that he'll have insurance coverage from three different insurers during a two-week period in late August.

This is no one's mistake: each is valid. Between the end of his year-long AmeriCorps service and the start of college is a gap of almost four weeks in July and August. So we got interim coverage through the Massachusetts Connector, with Harvard Pilgrim. His coverage through the college's health service starts in mid-August. And my wife's policy, through her employer, covers our family, including him, resuming in mid-August when he leaves for college.

Screwy, too, is the huge variation in the cost of the policies, of more than three orders of magnitude! There is no additional cost to us of the policy through my wife's employer; it's free. The college’s health service coverage costs $20/month. The Harvard Pilgrim plan costs us $143 a month. In the competitive U.S. market economy, it's hard to imagine any other product whose prices vary by three or more orders of magnitude.

(Incidentally, we had to buy the Harvard Pilgrim coverage for more than twice as long as needed, and pay double, because they require coverage to start at the start of the calendar month and end at month's end. That required us to duplicate my son's coverage in early July and late August. And they're a nonprofit!)

As I write this, I'm in the waiting room of my son's doctor's office, while Neil gets his physical. Annual physical exams are recommended at his age, and his college requires it. I've just had to pay a $25 copayment. Let's see, the purpose of the copayment is to discourage unnecessary use, and make consumers cost-conscious. I'm conscious, all right, though these prices are almost knocking me out!

So while many millions of Americans are uninsured, or under-insured, my son is, because of the system's requirements, briefly triply insured, at our expense. Single payer insurance, anyone?

Advice: Don't try to figure out health care insurance costs; it'll only give you a headache.

He's the guy with the medical degree: Obama's vision of government's role on treatment options

President Obama outlined his vision for the healthcare system in an interview with Andrew Leonhardt, published in the New York Times Magazine:

Consumers have gotten more active in their own treatments in a way that's very useful.  That should continue to be encouraged, to the extent that we can provide consumers with more information about their own well-being.

When it comes to medical care, I know how to ask good questions of my doctor.  But ultimately, he's the guy with the medical degree.  If my doctor tells me, You know what, you’ve got such-and-such and you need to take such-and-such, I don't go around arguing with him or go online to see if I can find a better opinion than his.

And so, in that sense, there's always going to be an asymmetry of information between patient and provider.  And part of what I think government can do effectively is to be an honest broker in assessing and evaluating treatment options.  And certainly that's true when it comes to Medicare and Medicaid, where the taxpayers are footing the bill and we have an obligation to get those costs under control.  

When Peter Orszag and I talk about the importance of using comparative effectiveness studies as a way of reining in costs, that’s not an attempt to micromanage the doctor-patient relationship.  It is an attempt to say to patients, you know what, we've looked at some objective studies out here, people who know about this stuff, concluding that the blue pill, which costs half as much as the red pill, is just as effective, and you might want to go ahead and get the blue one.  And if a provider is pushing the red one on you, then you should at least ask some important questions.  

Thanks to Andrew Leonhardt for the source article in the NY Times Magazine.

She was finally able to visit a specialist: Hip dysplasia treatment through Health Care for All

Barbara was born with a health condition called hip dysplasia, causing severe pain which affects her life in many ways. She works as a secretary at a landscape company and is a 22-year-old single mother. She can't walk well unless she takes a high number of very expensive medications.

She had been uninsured for two years and suffering without the medications that allow her to function normally when she was helped by a counselor at the Helpline of Health Care for All in Massachusetts. A few weeks after she filled out an application over the phone, she started her Commonwealth Care health insurance coverage and was finally able visit a specialist to take care of her health issues.

Barbara has been in treatment ever since. Pain medication is keeping her comfortable until her surgery scheduled for next month. She will have a hip replacement and the chance of success of her surgery is 98%. She is so excited about her new hip and stresses the important role that Health Care For All played in helping her through the whole process. Here is what Barbara has to say:

"We are so lucky to be Massachusetts residents. My daughter is 1 year-old and she was born with the same problem I have. But thanks to all the health care we receive, her health condition was diagnosed as soon as she was born and she had all the care necessary to fix her hips before she started having severe problems. She used a harness for a period of 4 months which helped to cure her problem. And through MassHealth she has the opportunity to go to the doctor for regular checkups. So I couldn't be happier about the health reform in Massachusetts and all the assistance and care I receive every time I call the helpline."

Advice to Massachusetts residents without health insurance: Call the HelpLine at 800- 272-4232.

Read a story of a young mother in another state who lacked insurance.

Thanks to Monika Lira Malhoit for the source blog post at A Healthy Blog.