Get an Ix with your Rx: Patient education by physicians

Joshua Seidman’s Advice: Research shows that 40%-80% of everything a doctor tells a patient in the office is forgotten, so taking along a patient advocate is a great strategy. Unfortunately, it is not always an option or sufficient. In order to ensure effective communication, every patient should leave the doctor's office with an information prescription (Ix). This after-visit summary reinforces what transpired in the clinic and outlines the person's next steps for self-management and interaction with the delivery system.

Providers that have implemented after-visit summaries — both in print form and available through a secure Web portal — have found that patients love them. The summaries provide something tangible to take home, guidance that is practical, and a bridge to the next visit or to a referral to another clinician.

Non-profit and government organizations such as the Center for Information Therapy, American College of Physicians and National Library of Medicine have been advocating information prescriptions for years.

Next time you go to the doctor, make sure to get an Ix with your Rx.

Read a story about model provider-patient communication, or read more atJoshua’s web site.

This is quite an experience: Emergency response with defibrillator, CPR and family

Dave's Story

This is quite an experience. The bottom line is that things are looking good. I returned home today and the next two weeks will be spent tweaking medications. Here is the best I can give you about a blow by blow on the event.

We had a family reunion and I guess I had dropped people off at the airport and then went to the Princeton Club to work out at about 3.30PM on May 28. I remember nothing of the events following that day or for the four days following that. I am told that I went to the Princeton Club for a workout; that the clerical person just happened to be looking down at the people working out and saw me drop. She called the paramedics who are based less than a block away from the club. The manager ran down stairs and found me pulse-less. He did the Automated External Defibrillator (AED) and CPR (he trained in both). The paramedics were there in less than five minutes after I dropped. If any one of these (the clerical person seeing me, calling paramedics, the manager applying the AED and CPR, the paramedics being so close) did not happen then I am still dead.

The paramedics took me to the hospital. The first my wife heard about it was when she got home from some errands. She was responding to a call from the fire department about me when two police arrived. She drove to the hospital. While one shock of the AED has started my pulse they could not get me to regain consciousness. So they asked permission to put me on a deep freeze bed that lowered my temp and put me into induced coma.

The kids, who were with their families heading home from our event, were called and messages left. All immediately headed back to Madison.

The help we got was amazing from family, friends, and colleagues. I am told that people as far away as Dartmouth, South Africa, and others all over the place got involved in advising the family, interacting with healthcare administrators, working with local clinicians; and just generally supporting the family (praying with and for us, hand holding, food, lawn mowing, telling us what to do).

I could spend the rest of this email and many others just listing the support I got from friends; this includes colleagues. But no matter how hard I tried, not all would be mentioned and that would be a terrible disservice. First because I would forget what some have done, and not know what others have done. Their acts and thoughts of kindness (and possibly most important, their prayers) got us through this and probably affected the ultimate outcome. We deeply appreciate it. Thank you so much.

I began to respond on day four. But before that the family and friends kept talking to me, encouraging me to respond, and telling me I was ready to respond and I guess I gave some signals: mostly vague utterances, small hand movements and tears. Family got me to respond long before health care providers could. I think this is an important message for all of us for future healthcare events; the involvement of family and friends is critical to recovery.

While I want to avoid thanking specific friends and colleagues. I just mention my wife and the kids. As has been the case for the last 51 years of my life, my wife was my rock. She initiated the efforts to engage many people, insist on high quality care and provided the central support in virtually all ways. As usual she was tough and constant. Now as the crisis ebbs, the effect of this crisis on her becomes very evident. She is just plain exhausted. One of my daughters was the organizer and the person with clinical background who could interact with and ask important questions. Another daughter was the Howitzer: "You (nurse) will never again talk about my father in the third person while you are in his presence. Do you understand me?!". And my son was the gentle politician who kept trying to keep the nurses happy so that they would give me good care.

I must not have felt "at home" at the hospital and wanted to be transferred to the University of Wisconsin Hospital cause when I did start communicating I kept asking "why did you bring me here? In reality they probably did just fine with the deep freeze protocol. But once I was moved to the step-down unit (from ICU) I and others wanted me to be at UW. My first real memory of this whole event was the ambulance ride to UW on day 5.

UW was amazing. Do you know that for the last three years running UW has the highest scores on cardiac quality (death rates, complications, medical errors) of any academic medical center in the USA?! The prevention, intervention and the rehab teams are so competent, well organized and positive in outlook. You know who is in charge and so does everyone else. The primary care doctors are deeply engaged in the work. Things work almost like a machine. Morale is high. Staff like each other and treat the patients with respect and commitment. And you can see what a woman's touch (the CEO is a woman) can do to one of the ugliest healthcare organizations I have ever been in. If someone had told me ten years ago that UW hospital and clinics could be a calming, pleasant place to work and be cared for, I would have suggested that the local mental health hospital could find a room for them. But she has transformed it (or at least someone has).

I don't mean to suggest this experience was a walk in the park. In fact being treated for cardiac problems is pretty demeaning. The lead nurse counseling me before my catheterization warned me a that a lot of hot-looking nurses would be playing with my crotch but to not get any ideas. She was right and I did not get any ideas.

Once we arrived at UW prospects just kept getting better. At first they were going to do a stent to open up one of my arteries, put in a pacemaker and defibrillator. Then after the catheterization the doctor in charge of my case said: all you need is to put in a stent to open things up and get your potassium levels straight!

On day four at UW I was discharged. The head of my team (who is also the head of cardiac rehab) said at most I injured about 5% of my heart and that should come back. He told me as far was my heart was concerned there were no restrictions; that I should take a week off and then get back to working out at least 5 days per week, up from three. The stent cured the problem. My wife, however, suggested he might want to see a psychiatrist and told me that I was taking the rest of June off! I married a good woman and I will do what I am told.

But the key result in all of this is that compared to what my wife and the family and friends went through, this was a walk in the park for me. I slept through virtually all of the toughest half of it. And the other half for me has been without incident; pain, etc. By contrast my family as well as other family, friends and other colleagues have (to different degrees) been through hell and back. They faced fear and uncertainty and made tough decisions that went far beyond what I faced. I wish I could have spared them of that.

It is hard for me to consider this experience to be just a melding of random events, but it might be. What is the probability that the event would occur at a setting that had an AED when I could have just as easily been out jogging? That the check-in woman would have just happened to be looking down and saw me collapse instead of attending to some detail or checking in someone. That the manager would have been there when he never comes in at that time on a holiday. That he knew how to operate the AED and do CPR. That the paramedics were just down the block not four of five minutes away. That an incredible team of people would come together just in time to prevent me from staying dead and to treat me in such a way that the event has now turned out to be one of relatively minimal consequence. What is the probability? But if there is a higher power in operation (which I choose to believe), it raises other disturbing issues such as Why me? Why Darfur? Why is the middle class reducing? Why is there no national health insurance program that would provide similar care for all? Why? I guess I will never know, at least until I permanently cross over, which I hope and pray will not be a quite some years.

Thanks again to each and everyone one of you for providing us support that "passes all understanding. "

Dave’s Advice: Family got me to respond long before health care providers could. I think this is an important message for all of us for future healthcare events; the involvement of family and friends is critical to recovery.

Read another of our stories of survival against the odds.

Those were the shortest 15 minutes of my life: Stroke centers

Chuck Toeniskoetter says he's alive today because of a nurse and a paramedic who came to his aid when he collapsed one snowy day high atop a mountain.

They didn't administer CPR. They didn't give him life-saving drugs. They didn't treat him at all. What they did was get him to the right hospital.

The helicopter ambulance pilot wanted to take Chuck to the closest hospital. But the nurse and the paramedic suspected he'd had a stroke and urged the pilot to go to a certified stroke center, 15 minutes further away.

"They stood on the runners of the helicopter and were relentless with the pilot. They saved my life," he recalls.

At the stroke center in Roseville, California, Chuck received TPA, a drug that dissolved the clot in his brain. It's likely that at the other hospital -- the one the helicopter ambulance pilot wanted to take him to -- he wouldn't have received TPA.

After Chuck's experience, he started the Stroke Awareness Foundation, to help others choose the right hospital if they've had a stroke.

When he thinks about how the nurse and the paramedic argued for him to go the extra 15 minutes to the stroke center, he says he'll always be grateful.

"Those were the shortest 15 minutes of my life," he says.

Art Caplan’s Advice: The first step is to find out where an ambulance would take you if you dialed 911. If you want to go elsewhere, you might be out of luck. Often you can't persuade an ambulance driver to go to a stroke center if you've had a stroke, or to go to a children's hospital if your child is injured. But you can be an informed consumer and check with emergency service providers in your area to find which hospital you'd be taken to and see whether you'd be able to negotiate a different destination.

Read another of our stroke survivor stories, or read Elizabeth Cohen’s source story.

My left arm shot out to catch them: Clinical trial of robotic Myomo device

When she was a college sophomore 21 years ago, she fell off the back of a friend’s dirt bike and hit her head on concrete, suffering a stroke. She learned to speak and walk again, and went back to school, and then to work. But much of Mary O’Regan’s left side remained numb, and she could not use her left arm.

Last year she chose to participate in a clinical trial of a new robotic device called the Myomo e100, designed to help stroke patients regain motion in their arms. Worn as an arm brace, the device senses weak electrical activity in the wearer’s arm muscles and provides just enough assistance so they can complete simple exercises like lifting boxes or switching on lights. After practicing such tasks, patients may begin to relearn how to extend and flex the arm, rebuilding the brain’s neurological pathways in the process.

"At first it felt weird and foreign. You have all these little muscles that are suddenly awake for the first time in 20 years. But I went back and practiced [three times a week for six weeks]. It was extremely encouraging," Mary said.

One time, she was delivering mail at work and the envelopes started to slip. "And my left arm shot out to catch them. That hadn’t happened in years."

By enrolling in the clinical trial, Mary had acted to help herself and other stroke survivors.

Advice: Consider participating in a clinical trial of a new drug or therapy.

Read one of our hero stories, or read more from Amanda Schaffer’s source article In the Science [NY] Times on July 10.

ALS Advocate Avi Kremer Wins Award

Avi Kremer, the Harvard Business School graduate who is using his management skills to battle his dread disease, received a top prize from the ALS Association last week.

Avi received the Lawrence A. Rand Prize for "raising awareness about the disease as well as millions of dollars for research in Israel and the U.S." Avi, age 32, was diagnosed with the condition, also called Lou Gehrig’s Disease, during his first semester at Harvard.

Advice: Appreciate Avi’s courage.

Read our earlier blog post on Avi.

Source: Stephen Smith’s article in the July 23 Boston Globe.

Pres. Bush, conscious sedation, and decision-making

On one day last week Vice President Richard Cheney was temporarily in command of the United States, during Pres. Bush’s colonoscopy. The president, we were told, was having the minor outpatient procedure under conscious sedation, and would hand over command to V.P. Cheney for a few hours.

The procedure removed five polyps from the president’s colon before they could become dangerous.

The president resumed his duties a few hours later.

Does this news of a chief executive being in command just after conscious sedation scare you too? Before my own procedure under conscious sedation under Versed and Fentanyl, I was appropriately told not to make any important decisions later that day. I felt quite in control afterward, however—which was quite a deceptive feeling. I had no memory, for example, of writing a thank you note to the doctor, or of asking someone to pass my note to the doctor afterward.

Advice: Make sure a family member or friend prevents you from making decisions while under the after-effects of conscious sedation.

Read one of our anesthesia stories.

A 75-year-old male with chronic obstructive pulmonary disease: Nursing ratio

A 75-year-old male has a chronic obstructive pulmonary disease (COPD) exacerbation. He is treated with steroids, gatifloxacin and help in breathing (mechanical ventilation). An initial X-ray showed his chest was clear, but on the fifth day of ventilation he got a fever and a raised white blood cell count, indicating an infection. The diagnosis was late-onset ventilator-associated pneumonia (VAP).

This man, the subject of a case study in a medical journal, survived. But many patients who get pneumonias that are associated with long times on a ventilator, i.e., late onset ventilator associated pneumonia, do not survive.

In the Intensive Care Unit (ICU), when managers allot fewer nurses to cover patients, late-onset VAP occurs more often, according to a study by Dr. Stephane Hugonnet and others that was published in Critical Care on July 19. Dr. Hugonnet calls VAP the most frequent preventable adverse event affecting critically ill patients, and says it prolongs the length of stay by up to 50 days, lengthens the duration of mechanical ventilation by 5 to 7 days, and generates substantial extra costs, of $10,000 to $40,000 per episode.

He thinks the reason is that rushed nurses take less time to wash their hands and skip other infection control recommendations. Time constraints can increase the probability of error by creating a busy, stressful environment with distractions and interruptions, leading to low compliance with hand hygiene recommendations and isolation procedures, or inadequate care for the ventilated patient. Cross-transmission of micro-organisms from one patient or the environment to another patient, or from one body site to another in the same patient, leads to colonization and infection, he reports.

Almost a quarter of patients on ventilators in the Intensive Care Unit (ICU) got pneumonia, and most of these were late-onset.

Advice to those with a family member in the ICU: Ask the ICU Nurse Manager the nurse staffing ratio.

Read one of our tired nurse stories, or read Dr. Hugonnet’s source article.

Attaboys from his teammates: Jon Lester’s Win over lymphoma

After six chemotherapy treatments over the winter, he was declared free of the anaplastic large cell lymphoma that had interrupted his solidly successful rookie season as a pitcher with the Boston Red Sox.

The Red Sox had gone slowly in bringing back Jon Lester, waiting until last night to give him the ball. In the sober words of the New York Times journalist Bill Finley, "he made a dramatic and effective return….[H]is ability to get outs has apparently not been diminished by his battle with cancer."

At the beginning of the game he received a warm round of applause from fans of both the Cleveland Indians and Red Sox. His teammates gave him good run support, scoring four times in the first inning.

Six innings later, he was pulled from the game, ahead, 5 – 2. He got slaps on the back and attaboys from his teammates. The Red Sox fans in the Cleveland stadium cheered, and Manager Tony Francona congratulated him.

Lester was supportive to others, wearing a red wristband in support of the Lester Project, an offshoot of another cancer charity, the Jimmy Fund.

Advice to cancer patients: Get a group of supporters who are as fanatic as Red Sox Nation.

Read another of our cancer survivor stories, or read the source stories by Nick Cafardo, Amalie Benjamin, and Bill Finley in the Sports sections of today’s Boston Globe and New York Times.

When you hear a bad prognosis: Dire diagnoses

Jessie Gruman knows all too well what it’s like to hear bad health news: first at age 20 with a diagnosis of Hodgkin’s Disease, ten years later with cervical cancer, five years ago with a potentially fatal infection of the heart’s lining (viral pericarditis), and three years ago with colon cancer.

Based on her hard-won lessons on survival, she has written Aftershock: What to Do when the Doctor Gives You – or Someone You Love – a Devastating Diagnosis.

Advice to newly diagnosed people: Read her book.

Read one of our survivor stories, or read more from Jane Brody’s column in the New York Times on July 3.

One more day: A wrong drug error

In early November, Dean Baggett had his prescription for a common painkiller refilled. Three painful weeks later he was close to death, said his wife, Laura Baggett.

"You are so careful and think you're doing everything right ... and then something so preventable like this happens," said Laura, an emergency medical technician who runs a cardiopulmonary resuscitation training business and coordinates the CPR program for city employees in Fremont, California.

A prescription for painkillers was mistakenly filled with an antibiotic. On the bottle for the painkiller that Baggett was given, the label reads: Carisoprodol: generic for SOMA/white, round tablet/MP 58. But the oblong, white pills inside Baggett's bottle are marked "MP 85." Dean said he noticed the discrepancy immediately.

However, an employee at Haller's Pharmacies in Fremont, which filled the prescription, explained that the numbers were different because the refill was a generic version of Soma, Laura said.

The Haller's manager and Dean's doctor both refused to comment.

Taking the antibiotic for nearly three weeks made Dean's immune system attack itself, nearly wiping out his body's platelets.

"Just touching his arms raised blood blisters, and he would bleed from the mouth and even his cuticles," Laura said. "He was so sick."

The antibiotic contained sulfa, to which Dean is highly allergic. In addition, his wife said he was having withdrawals from Soma, which Drugs.com warns should not be stopped suddenly without first talking to a doctor.

"I just felt like curling up," Dean said. "One more day and I would have probably woken up cold."

By the afternoon of Dec. 1, Dean was rushed to the emergency room in a Fremont, California hospital. He was given multiple blood transfusions, and by the following Monday he was stable enough to return to his home.

A week later, his hands and arms still were swollen and bruised.

Now the reality of mounting medical bills is setting in for the former New United Motor Manufacturing Inc. employee.

"He is still very sick," Laura said. "He has a long recovery ahead."

Advice: Carefully inspect the medication label and pills for possible transposed numbers.

Read one of our wrong drug stories, or read more from the source article in the Oakland Tribune of Dec. 12, 2006 by Angela Woodall.

They are good men OR a large corporate drug cartel: OxyContin fine

"Money can’t buy all the lives that were lost," commented Robert Palmisano, who was addicted to OxyContin for four years, but has been off the drug for 17 months. Lee Nuss of Palm Coast, Florida, a victim’s parent, told the convicted executives they were "legal drug users, nothing more than a large corporate drug cartel."

The executives’ lawyer said "they were good men, not here because of any acts of misconduct."

A U.S. District Court judge seemed to agree more with Lee Nuss. Judge James Jones ordered Purdue Pharma executives to pay $635 million in fines for misleading the public about the painkiller OxyContin’s addictiveness.

From 1996 to 2001, the number of deaths related to oxycodone increased five-fold. In 2002, the Drug Enforcement Administration said the drug caused 146 death and contributed to 318 more.

Read one of our OxyContin stories, or read more from Sue Lindsey’s story today in the Boston Globe.

I owe my life: Recovery from alcohol use

Heather's story

I have been documenting my life lately but not here. I miss it. I owe my LIFE! to 43things.com. The support I have gained here has been incomparable to anything in my history. It put me in the place I needed to be. I need to revisit more often to give support to all the others in the early stages of getting where I’m at now. Thank you 43things.com. I am no longer an alcoholic, I have lost more than 40 pounds, I have learned to set goals and follow them through! I am LIVING and all I needed the whole time was a little support. Thanks to ‘make new friends’ I have my own support network these days and HONESTLY I couldn’t have pulled myself out of the darkness I was in if not for help.

xoxo,
Heather Rae Hatton

Advice to those struggling against dependence: Find a welcoming support group.

Read another of our drug dependence stories, or read Heather’s source blog post.

Isabel’s illness took a strange turn: Misdiagnosis and medical decision-making

Isabel Maude's Story:

During the summer of 1999, three-year-old Isabel Maude was diagnosed with chicken pox. Days after the initial diagnosis Isabel's illness took a strange turn that would lead to days of uncertainty, panic, frustration and near-death.

When she developed the typical signs and symptoms of chicken pox, her parents, Jason and Charlotte Maude, were told to expect itching and general discomfort - relatively minor side effects that would soon subside. But a few days later, Isabel developed a high fever, vomiting, diarrhea, and severe pain and discoloration of the chicken pox rash. Follow-up visits to the family physician and Emergency Room (E.R.) reassured Jason and Charlotte that Isabel's suffering was normal and nothing to worry about. Like most parents, Jason and Charlotte trusted the family and E.R. physicians' opinions and went home breathing a sigh of relief and awaiting improvement. But Isabel's condition worsened.

Concerned that her condition was critical, her parents took her back to the E.R. Minutes after arriving, Isabel's blood pressure dropped dramatically and she required emergency resuscitation. Suddenly, it seemed clear that what Isabel had been suffering from was not just chicken pox but a secondary life-threatening infection. Isabel was moved under police escort to the pediatric intensive care unit (PICU) at St. Mary's Hospital in Paddington, London, where Dr. Joseph Britto, a Pediatric Intensive Care attending physician, took over her care.

Isabel was diagnosed to be suffering from complications of chicken pox -Toxic Shock Syndrome and Necrotising Fasciitis, a flesh eating bacteria. Isabel spent two months in the hospital, including a month in the PICU after experiencing multiple organ failure and cardiac arrest. Throughout the entire ordeal Isabel's parent's worried that their daughter may not survive and, if she did, would likely have suffered brain and other organ damage.

To treat the Necrotising Fasciitis Isabel underwent an emergency operation to remove the infected skin, leaving extensive scars around her stomach and requiring multiple reconstructive operations. Today, these scars are the only physical reminder of her brush with death. Isabel made a full recovery and is bright and active elementary school student.

Isabel’s father Jason Maude has created something positive and constructive from the ordeal. Isabel's intense suffering may have been avoided if her doctors at the local hospital had taken all of her symptoms and clinical signs into account and thought of all possible diagnoses, rather than just assuming her symptoms were related to the chicken pox. Isabel was misdiagnosed and needlessly suffered as a result. Rather than suing the hospital for the error, Jason teamed up with Dr. Joseph Britto who conceived the structure of the Isabel clinical diagnosis decision support system. Isabel Healthcare was created, in honor of Isabel Maude and all patients whose lives have been impacted by missed or delayed diagnosis, to help clinicians around the world prevent diagnostic errors.

Today, the Isabel diagnosis support system is being used by doctors, nurses, residents and students to reduce diagnostic and decision errors, and improve patient safety and the quality of care.

Advice for people looking for a doctor: Try to find a doctor who uses a clinical decision support system, email, and an electronic medical record. While frighteningly few of them do, you can probably find a doctor who uses at least one of these modern tools.

Read another of our misdiagnosis stories about a baby girl, or ask for a copy of the source email message. Thanks, Andrew Law.

Despite their best efforts: Round 2 of Charlie Weis’ malpractice lawsuit

The jury selection process began last Friday for the retrial of the medical malpractice suit brought by Notre Dame head coach Charlie Weis against two surgeons at a Harvard teaching hospital. Weis claims the two allowed him to bleed internally for 30 hours after the 2002 gastric bypass surgery, before performing a second operation to correct the complication. Weis nearly died while in a two-week coma and has a lingering limp with his right foot from the surgery.

The first hearing in February ended in a mistrial when a male juror collapsed during a medical expert’s testimony and the defendant doctors rushed to his aid, potentially influencing the other jurors and the outcome.

There are clear risks which patients should understand, according to bariatric surgeon Dr. John Romanelli. Bleeding, infection, leak from the stomach-intestine or intestine-intestine connection, ulcers in the stomach pouch, narrowing of the stomach-intestine connection, heart attack, pulmonary embolism, stroke, and longer-term vitamin and mineral deficiencies are all risks of the surgery. All of this needs to be explained to the patient in detail over a period of time where they can digest the information and ask questions about it, he said.

It is particularly important to consider the complications because they happen so frequently – in 30% of patients, according to Dr. Romanelli. The survival rate for gastric bypass surgery is 98%; as much as 2% of patients die, according to an article in the Journal of the American Medical Association in October 2005.

Regular follow-up with the surgeon is important because some problems can occur years later. For example, “vitamins such as B12, folic acid, thiamine, and minerals such as calcium and iron can become deficient in gastric bypass patients, and levels must be checked regularly. Ulcers, which are most commonly found in patients who smoke, can happen years later. Hernias can occur – either in the abdominal wall or in between the intestinal loops," says Dr. Romanelli.

In general, patients whose weight is 100 pounds over their ideal body weight might qualify for this kind of surgery, he added.

"Without knowing the case [of Charlie Weis] directly, one concern I have is that he opted to bypass many of the routine preoperative evaluations because he had a tight time window of availability away from the Patriots, and I know this from the media reports from the trial. I wonder if this exacerbated the problems that developed.

Complications like this can and do happen, despite the best efforts of well-trained doctors."


Advice to those thinking of gastric bypass surgery: Fully consider the risks, benefits and alternatives.

Read Part 1 of the story, or read John Haynsworth’s source story.

I still walk a little funny: The kick-butt chaplain’s faith

In 1996, doctors found a benign tumor in her brain the size of a tennis ball. The day after it was removed, she had a stroke. Her right side became paralyzed.

"I was frightened and mad. Mostly I worried about my husband and daughters: What about them?" said Chaplain Margaret Muncie.

So many people prayed for her. She was not allowed to abandon hope, not through the years of physical therapy that reduced her paralysis to a lurching limp, thanks to a recently fitted electronic neurostimulating device she calls "my own little miracle."

"I walk faster now. I’m the kick-butt chaplain." Now she is in her fifth year at St. Luke's-Roosevelt Hospital in New York City.

She says her core belief about healing is found in Psalm 121: "My help comes from the Lord, who made heaven and earth," – spirit and body, faith and medicine.

Her own experience deeply informs her ministry now. "In Scripture it says, ‘Get up from your bed and walk, your faith has made you well.’ ‘Well’ doesn’t mean perfect. But wholeness and healing can happen, even when there is still brokenness on the outside. I’m more whole than 12 years ago. But I still walk a little funny."

Advice: Faith and medicine are a powerful combination.

Read one of our brain tumor survivor stories, or read more from Jan Hoffman’s article in today’s New York Times.

You can pay to jump the queue: Insurance delays for Hodgkins Disease treatment

Prof. Mark Kleiman’s story:

Now that Michael Moore's SICKO has raised again the question why the Canadian health care system functions so much better than ours, supporters of the current mess have gone back to chanting: Hip replacement! Rationing! Hip replacement! Rationing! Markets! Markets! Markets! Markets! Sis, boom bah! or words to that effect.

The response, of course, is that rationing, including rationing by queuing, is just as much a feature of the U.S. system as it is of competing systems. And while waiting for a hip replacement sounds pretty bad, there are worse things to have to wait for. Take it from me.

In the spring of the year 2000, after several months of what in retrospect was intolerable negligence both by me and by my internist, I was diagnosed with cancer. I had fancy-dancy health insurance through my employer, which as it happens also owns one of the world's dozen best medical centers.

The diagnosis of cancer, based on symptoms plus the chest X-ray that should have been done several months earlier, was made very early in May. By then, I had dropped forty-some pounds, had almost no voice, couldn't walk more than 30 yards without puffing, and had a resting respiration rate of 20 breaths per minute. My friend Gary Emmett, who made what turned out to be the correct diagnosis a month earlier just by listening to me on the telephone, came out to visit, and told the rest of my friends that if they wanted to see me alive they'd better make their plane reservations in a hurry. (The technical term is "Stage IV-B." Not good.)

But of course you can't treat "cancer." You have to treat some specific cancer. And you can't treat it until you figure out what it is.

That process took just about one full month, a month during which my chances of survival were dropping fairly steadily and the intensity — and therefore the side-effect profile — of the treatment that would be required if we ever got the damned thing figured out was rising in parallel. It would have taken longer — quite possibly fatally longer — if Al Carnesale, whom I'd known when we were both at the Kennedy School, and who by then was the Chancellor of UCLA and thus at some ethereal level responsible for both me and the hospital, hadn't sent a note to the guy who runs the entire UCLA medical area (hospital and medical school). The note politely hinted that it would be at least marginally preferable if my department didn't have to go through the hassle of recruiting a replacement. After that, things speeded up somewhat.

What absorbed that month? Mostly waiting.

After the chest X-ray, I needed to see an oncologist. I couldn't make an appointment until I had the approval of the insurance company for the referral. That took a few days. Getting on the oncologist's schedule took a few more days.

After the oncologist saw me, he wanted a bone marrow sample to send to the pathologists to figure out what the cancer might be. I couldn't make an appointment for the bone marrow procedure until the insurance company approved it. Then I had to wait for the bone-marrow extractor to have time on his busy schedule.

When it turned out that there wasn't enough marrow to test, I needed a lymph-node biopsy. More waiting for an insurance approval and more waiting for an appointment. Having seen the head-and-neck surgeon who was going to do the biopsy, I couldn't have the biopsy right away because the insurance company wouldn't approve it as an in-patient procedure and there was queue for outpatient biopsy operating room time. Anyway, the guy who had seen me didn't have any time free on his dance card for the next several weeks, so he sent me to another surgeon to actually do the procedure.

When I showed up for the outpatient biopsy, the anaesthesiologist took one look at my chart and flatly refused to put me under for the procedure except in an in-patient setting, on what seemed like the reasonable grounds that otherwise I could easily die on the table. That meant, of course, more waiting for another approval and another appointment.

All this, let's recall, with the Chancellor breathing down the neck of the boss of the medical area on behalf of a full professor at the university that owns the hospital. So my experience with the system was probably about as good as it gets except for corporate executives using places like the Mayo Clinic or family members of people on the boards of directors of hospitals. (Apparently it's generally understood that if you stump up enough in the way of contributions to get on the board of the hospital, you're entitled to priority care; that's how not-for-profit hospitals raise capital.)

It was only later that I discovered why the insurance company was stalling; I had an option, which I didn't know I had, to avoid all the approvals by going to "Tier II," which would have meant higher co-payments. The process is designed to get very sick or prosperous patients to pay to jump the queue.

I don't know how many people my insurance company waited to death that year, but I'm certain the number wasn't zero. As I say, in my case it was a damned close-run thing. (Fortunately, the eventual diagnosis was of a curable cancer, and the actual treatment I got once the diagnosis was made was prompt, well-executed, and entirely successful.)

That's on top of the procedures the insurance companies simply refuse to pay for at all because some clerk decides they aren't "medically necessary," which for most people means that the queue for that service is of infinite length. So can we hear at little less about how long Canadians wait to get their hips replaced?

Now I might be inclined, if I ran the zoo, to have a system that used less rationing of all kinds. It's true that one key to reducing health care costs is to deliver less of the very expensive forms of health care: ideally, less of that portion of health care that does harm, or at least doesn't do enough good to justify its costs. But I'm not convinced that cost containment — as opposed to the related but conceptually distinct question of how to keep health care costs from financially ruining individual households and companies, and how to prevent the search for health coverage from distorting labor-market decisions — deserves as high a priority on the list of health care reform goals as most health policy wonks give it.
It seems to me likely that most health care is, in Robert Frank's terms, "non-competitively consumed," while much of the rest of household spending is on goods that are competitively consumed. If so, it's not easy to see the case for spending less on health care so we can all spend more money, in the course of our shorter and sicker lives, trying to live in bigger houses, have classier consumer electronics, drive faster cars, and wear fancier clothing and wristwatches than our brothers-in-law.

But however you come down on that argument, the claim that replacing the current insurance mishmash with a better-integrated payment and decision-making process would mean more rationing, or even more rationing-by-queuing, is the sort of palpable falsehood that people who are perfectly honorable in real life are only too willing to utter in ideological conflict, especially if paid to do so. Under a single-payer system we'd have an idea who was waiting how long for what, while under the current system no such data are available. In all my waiting, I was never in a formal "queue," and if the cancer had gotten me before the pathologist figured out what it was no one would have counted that death as the result of rationing. But only in wingnut health-policy fantasyland is not measuring a problem the same as not having a problem.

Update: I had Hodgkins Disease, and got the right treatment for it. But patients with the more common and less curable non-Hodgkins Lymphoma seem to mostly be getting the wrong treatment, due to the financial incentives built into the current system of paying for health care.

Advice for patients awaiting insurers’ approval: Ask your insurer what alternatives you have.

Read another of our insurance company stories, or read more fromProf. Kleiman’s blog.

She can read her own MRI: Six-time cancer survivor

Lois Ferrarra beat cancer. Six times. In a span of two decades, doctors diagnosed Hodgkin's disease, then lung, thyroid, vulvar, breast and skin cancers.

Mrs. Ferrara has endured more than a dozen surgeries and countless medical treatments. And though none of the cancers stemmed from another, she has emerged each time cancer-free.

"Hello, I'm still here," she said at a recent gathering to celebrate her 20th year of survival. "It's great to be here. Heck, it's great to be anywhere."

Mrs. Ferrara's doctors have marveled at her uncanny ability to repeatedly fight off – and laugh off – the diseases.

Mrs. Ferrara, 49, is training for the Breast Cancer 3-Day Walk this fall. She's also using her experiences to counsel those who have been diagnosed with cancer or are recovering, walking them through the process of choosing doctors and procedures.

Friends and doctors say it's her fierce determination that attracts fellow survivors to Mrs. Ferrara. That, and her way with encouraging words.

"No one is going to fight your cancer like you will," she said. "I often wonder if that is why I am still here, to equip others for the battle."

At 29, Mrs. Ferrara learned she had Hodgkin's disease, a lymphatic cancer. She remained cancer-free for 11 years, but then developed the other cancers.

All of the cancers were caught in the early stages, but three almost went undiagnosed. During a routine gynecological exam her physician felt a lump on her throat. On a hunch, she went for further testing.

"My inner voice is routine," said Mrs. Ferrara, a Richardson, Texas resident. "I'm not sure you can teach someone to hear it, so you have to be thorough."

Mrs. Ferrara's initial biopsy was not diagnosable. She opted for surgery to remove it, losing part of her thyroid. While on the operating table, her surgeon found a baseball-size tumor on her esophagus.

Dr. Dan Meyer, a cardiothoracic surgeon at UT Southwestern Medical Center, believes there is something in Mrs. Ferrara's genetic makeup that makes her susceptible to tumors. But he also believes her attitude is a major factor in her ability to survive. Dr. Meyer remembered a time when Mrs. Ferrara came in for an office visit. She commented on how another patient was having a bad day and how she felt for that person.

"This is Lois, a young woman a day away from a mastectomy, never spending time reflecting negatively on her own existence but just focusing on the positives in life and trying to help others choose this vision," he said.

"She is unique in this way, and it must have an impact on her ability to fight against these multiple different cancers."

Mrs. Ferrara jokes that she's become a "professional patient" who carries a document explaining all of her procedures to attach to patient forms.

She said, "I write on the form, 'You don't have enough room. See attached.'"

Mrs. Ferrara's personality is reflected in everything from her crystal blue eyes and brightly-colored shirts to her tiny, vintage, one-door BMW.

She credits another component to her survival to her charismatic, fun-loving husband, Richard. Before her recent surgeries, he wrote messages on the bottom of her feet.
For her celebration, he wrote, "Life. I love you." The process never ceases to make them laugh out loud. During her last surgery in January, a hysterectomy, the message read, "Git'r Done!"

Dr. Elizabeth Jekot has been the recipient of one of these messages. Before becoming her doctor, Ms. Jekot was a friend of Mrs. Ferrara's. The two met through a literacy board.
She started seeing Dr. Jekot, who founded a breast imaging center in Richardson, in September after her second breast cancer diagnosis. She too is a breast cancer survivor. And she too is inspired by Mrs. Ferrara.

"Talk about talking to the most educated patient," Dr. Jekot said. "She could read her own MRI."

Mrs. Ferrara had never even had a stitch until her first surgery. She never suffered a broken bone chasing her older brothers and jumping off roofs as a child.

"Don't tell me I can't" is something she has been saying her entire life, she said.

She said there were times she almost let mortality sink in, but she didn't give it much thought. Instead, she got busy.

Today, Mrs. Ferrara is disease-free. She says she believes that cancer is her nemesis and that it could eventually take her life. Until then, she will keep fighting the fight for herself and others.

She sums her life up in singer Paul Anka's big band version of It's My Life. "I have cancer, but it's not my life," she said.

The four months of daily radiation treatments that cured her first cancer could be what has caused her other malignancies. Her immune system has been weakened by the treatments.
"The cure is killing me," she said. "But if I had not had ... [radiation], I wouldn't be here."
If not for her humor she might have given up, she said. A positive attitude is one key to survival, and sharing it gives her reason to live.

Friends and family diligently follow her daily blog on training for the Breast Cancer 3-Day Walk this fall. Most of the money raised will go to Susan B. Komen for the Cure.

Read another of our cancer survivor stories, or read Mikki Kirby’s source story.

All patients should know their options: Lymphoma drugs Bexxar and Zevalin

Linda Stephens had late-stage non-Hodgkins lymphoma, a cancer of the immune system that attacked her white blood cells, and a grim prognosis. Chemotherapy proved both difficult and ineffective. Less than a year after her diagnosis, the disease was spreading, and had involved every lymph node in her body. Now, at age 58, she has been cancer-free for seven years. Betsy de Parry (cancer-free for five years) and Dan Wheeler (cancer-free for three years) have similar stories. All had received Bexxar or Zevalin, which are costly, rarely used drugs in a new class, called radioimmunotherapies.

Clinical trials to show whether the drugs extend patients’ survival rates are nearing completion. Early studies showed the drugs have significant advantages over Rituxan, the mainstay drug for these patients. When it reviewed the clinical trials for Zevalin in 2001, the FDA found that "as compared with the Rituxan therapy, Zevalin was associated with a superior overall response rate."

Linda, Dan and Betsy are among the lucky few who receive Bexxar or Zevalin: only one tenth of the patients who would be suitable candidates for these drugs actually receive them.

Financial incentives discourage their use. Infusions of chemotherapy, Rituxan, and other drugs form the primary source of income for most oncologists. But Medicare and private insurers do not pay the oncologists for prescribing Bexxar and Zevalin, since these drugs must be administered in hospitals.

Also, most oncologists outside academic hospitals treat many different cancers, and may not be familiar with these drugs, which are used specifically for certain kinds of lymphoma.

Betsy de Parry says, "It’s not that I believe that radioimmunotherapy is right for everybody. I just think that all patients should know their options."

Non-Hodgkins lymphoma is the fifth most common cancer in the U.S., with 60,000 new patients diagnosed each year. About 20,000 people could be suitable candidates for Bexxar and Zevalin.

Advice for lymphoma patients: Learn more from the Lymphoma Research Foundation. And keep an eye out for news of the completion of the clinical trials.

Read one of our lymphoma survivor stories, or read more from today’s New York Times article by Alex Berenson.

Satisfied users of medication reminder watches: Patient compliance

These three testimonials appeared on a vendor’s web site, so take them with a grain of salt:

C.C.’s Testimonial:
Your company was very helpful in finding a good electronic reminder for my Mother. She is Diabetic and needed help in trying to remember to take her Insulin at the right time. Before she had the watch that we eventually bought from epill.com, we had experienced a couple of spells where her blood sugar required us to call 911 in the middle of the night. Needless to say, this caused my Father and the rest of our family great stress. Since then, she hasn't forgotten to take her Insulin and actually enjoys the vibrating watch that we got for her. With her hearing problems, she never would have had the same degree of success with an audible alarm. Your complete and informative website directed us to the right alarm for her.

Thanks so much! We will enjoy the watch and having my Mom around for hopefully many years to come.

K.P.’s Testimonial
The watch (e-pill MeDose) is a godsend. Prior to using the watch my grandson had approximately 64 seizures in a 2-month period. Since using the watch he has had only 2 seizures in a 2-month period.

T.M.’s Testimonial
Thank you for creating this product (MD.2). My mother is able to stay at home and take her medication thanks to this pill machine. She was recently declared cognitively unable to take her medications from a traditional pill box.

The visiting nurses have commented on how much better she is doing now that she is getting the correct medication at the correct time. Prior to having your specialized pill machine, my mother was inadvertently taking medication from the wrong day or time or getting confused and trying to put the medication back into the regular pill bottles and fill the pill boxes herself.

This machine has eliminated all of that confusion for her and allows her to live at home and take her medication without supervision.

Thank you for giving my mother additional days/months/years of independence. I know at some point her Parkinsons will get the best of her, but for today, the machine [e-pill Monitored Automatic Pill Dispenser] allows her greater independence. Thank you.



Advice to family members with a forgetful loved one on medication: Consider buying a device like the ones described above.

Read one of our patient compliance stories.

I’ve been robbed since I was 49: Malpractice - surgical error

An operation nearly two decades ago left her incontinent and in pain, shuffling from one medical appointment to the next in search of a way to repair a hole in her bladder. She says several subsequent surgeries and procedures failed to correct the problem.

For the past 17 years, Frances Borrow has lived with a plastic bag constantly strapped to her stomach that collects her urine, the legacy of a 1990 hysterectomy during which her bladder was accidentally sliced. "I've been robbed since I was 49 years old. From then on, it's been a nightmare. I was a very outgoing, happy person. It was like my whole world turned around. Nobody should have to live that way."

Frances is one of more than three dozen women who now say they suffered lasting physical and emotional injuries after surgery by a Scarborough obstetrician and gynecologist.

They all wonder if they could have avoided years of hardship had they known about his surgical complication rate, a string of malpractice suits against him and a pattern of patient complaints.

The documents, filed as part of a $500,000 lawsuit by one former patient in 2003, show that surgeon had complication rates for total abdominal hysterectomies (the surgical removal of the uterus by an incision in the abdominal wall rather than the vagina) of 30% in 2000, 30% in 2001, 9% in 2002 and 10% in 2003.

A 1992 Ohio study of 160,000 hysterectomies found a complication rate of 9% was the average for that operation.

The Ontario provincial government announced this week it will require hospitals to report unexpected death rates and infection rates alongside the wait times posted on a government website for procedures in five key areas, to be posted by Spring, 2008.

The government will not, however, publish the complication rates of individual surgeons.

Advice to patients about to undergo surgery: Find out the surgeon’s complication rate first.

Read another of our surgical error stories, or read the source story by Robert Cribb and Tanya Talaga on medical secrecy.

They discovered something in common: Hepatitis from surgeons

A few years ago, two Long Islanders with hepatitis C met in a support group and discovered that they had something in common: both had become infected with the virus after open-heart surgery – by the same surgeon.

Public health investigators, who were looking into one of the two cases, had not asked the patient’s surgical team members whether one of them might be infected. After they did, they eventually determined that the surgeon was infected and that he was the inadvertent source of both patients’ infections, and that of at least one other patient.

Surgeons often cut or nick themselves. Surgeons in training get eight needle sticks in their first five years, on average, according to a recent survey in the New England Journal of Medicine. In that way, they can catch some viruses that spread from blood-to-blood contact, like hepatitis and HIV.

Advice to patients: While the risk is remote, if you like, you can ask the surgeon if s/he is infected with any blood-borne infection.

Read another story on the benefit of support groups for heart surgery patients, or read Roni Caryn Rabin’s source story in the July 3 issue of the New York Times.

I did not want to scare her: Misdiagnosis, medication errors, and patient privacy

Susan Stern’s story:
Two years ago, I drove myself to a hospital Emergency Room with only moderate pain in my right and left shoulder. Since I am over 70, I was immediately given nitroglycerine, and the dose was repeated three times during my Emergency Room stay.

I was brought two more times to the E.R., each time with more severe pains. I was then correctly diagnosed with pericarditis. The last hospital wanted to admit me, but I signed myself out against doctor’s advice.

When my daughter called at my request, the doctor told her I might die unless I stayed at the hospital. I needed my daughter’s involvement, since I could not drive myself to see my doctor, but I did not want to scare her, as she was the mother of a toddler and pregnant with her second child.

I told my doctor that I did not want anyone telling my family that I might die. I was told that my only choice was to prohibit the doctor from giving any information to my family or having no control whatever over what was said.

I am now enjoying excellent health. I put a letter in my file instructing the doctor to share all dire warnings only with me.

Details of a person’s illness should be kept private from kin if the patient is conscious and does not want certain details revealed.

Advice: Write a letter about your preferences and have your doctor put it in your medical record.

Read one of our patient privacy stories.

Source: Susan’s letter to the Editor appeared in the July 9 New York Times.

It's not 20th century: Electronic medical records and patient waiting times

Barbara Duck:

"I've always loved [my medical practice], they treat you like family," says patient Josh Dryman, a 33-year-old who lives in Laguna Niguel, California. "But I had to wait an hour in the lobby and wait in the exam room another half-hour. Now [that they have an electronic medical record], when you go in, they get you in right away and the staff seems a heck of a lot friendlier."

Most of the time it is pretty easy to detect once you walk in to a lobby of a practice, those still using paper seem to possess an atmosphere of chaos to some degree, and the entire staff appears rushed and somewhat stressed, whereby those offices using electronic records have much of this information at their fingertips on the computers, thus less physical movement in pulling charts, looking for faxes, etc. and this in itself allows the office to focus better on patient care and not chasing information.

"The average consumer takes it as a given that doctors have these systems in place," says Peter Lee, chief executive of the Pacific Business Group on Health, an employer coalition based in San Francisco. "They don't know how much medical care today is not 20th century, let alone 21st century, in terms of how much doctors rely on paper instead of computers."

Nationally, only about 20% of physician offices are computerized; the rest still rely on notoriously inefficient paper charts. But computers are an easy benchmark for quality. They can help a doctor not just keep track of files, but also send out prescriptions accurately and quickly, get lab results inserted into the record automatically and be reminded what the scientific evidence suggests is the next best step with a patient.

Advice: In choosing a physician, ask whether s/he uses an electronic medical record to look up lab results, allow lookup of your record during evenings and weekends when you are sick, reduce medication errors, foster email communication with patients, and generally join the 21st century.

Read a story on an exemplary health care provider with odd and useful electronic medical record recommendations for patients, or read more from the source blog post.

Take your cues from him: Patient’s role in medical decision-making

Granny Tiger (not her real name, I assume) wrote perceptively about the role that patients want in medical decision-making. Her comment responds to Dr. R.W. Donnell’s thought-provoking blog post about the ways doctors can think; both appear below.

Dr. R.W. Donnell:
We should allow patients to be involved to the extent they wish. But I would caution that unless we apply rigorous principles of evidence-based medicine to the discussion with the patient, the decision making process becomes flawed. So if patients’ decisions need to be evidence-based just as doctors’ decisions do how do we bring that about? Is there enough time in our busy practices to do it?

Consider these case examples. You are counseling your patient about upcoming knee replacement. You plan to give enoxeparin for DVT prophylaxis. How do you inform the patient? Sure, you know that it’s the right thing to do and all the experts recommend it, but the patient deserves evidence. So, you do a Pub Med search (or, somewhat more easily, consult a filtered resource such as Up To Date) and cull out the studies you critically appraise as valid and applicable to your patient. In order to advise your patient on the magnitude of benefit of the proposed treatment you look for, or calculate the absolute risk reduction (ARR) for the proposed treatment as well as the absolute risk increase (ARI) for bleeding. In order to translate this into language the patient can understand you then, from the absolute risk reduction for DVT and the absolute risk increase for bleeding, calculate the number needed to treat (NNT) and number needed to harm (NNH) respectively. You then have the discussion with the patient, modifying it as necessary to take into account any unique attributes of your patient which might increase bleeding risk. If the patient is to be discharged early after the surgery you must also provide information concerning the cost of continued enoxeparin at home, taking into account the patient’s financial condition and payer sources. Then you ask the patient and any concerned family members if they have questions, answer them as they arise, and document your discussion in the medical record. Time consuming, eh?

Of course if this is not your first patient to receive enoxeparin for orthopedic prophylaxis maybe you’ve done the drill before, but the discussion still takes a lot of time….

Grannytiger’s reply:

My goodness. If my physician went to all that trouble for me, I'd require resuscitation from the shock. But to tell you the truth, such extreme conscientiousness -- while I applaud it -- is not only impractical in terms of time (yours!) but also overestimates by a long shot what most patients would expect in terms of empowerment.

We certainly want to be informed but there are much less time-consuming ways to help us achieve it. Offer a pamphlet on DVT prophylaxis to the knee replacement patient. You probably already have a pretty standard informed consent "spiel"; give the patient that, and then take your cues from him. If the situation warrants, make a quick diagram of his anatomical problem and what the proposed treatment will do. If he is one of the relatively few patients who really seem to need the specifically tailored information you describe, fine. But most of us will not.

As long as we know you are open to answering questions, even ones we think of after we leave the office, most patients feel that we have a role in the decision-making process.

Advice to doctors with Web-savvy patients: To get a more useful discussion next time with patients, tell them the evidence-based web site/s you respect.

Read one of our informed consent stories, or read more from the source blog post by Dr. R. W. Donnell.

Charity born out of tragedy: An undiagnosed baby

Sometimes, out of the saddest situations, heroes are born.

At 9 pounds, 2 ounces, Emma Patmore looked healthy when she was born on Feb. 2, 2006. But her mother Tara, a neonatal Intensive Care Unit nurse, knew something was wrong.

Yet doctors never were able to make a diagnosis, even during Emma’s 16 weeks of hospitalization.

Emma passed away in December 2006, the day after her first photo with Santa.

Originally, her parents had launched the Emma Patmore Foundation as a way to help cover medical costs. Then "it just exploded into support, unbelievable support from family and co-workers," Tara said.

After Emma died, the Patmores decided to keep the foundation going to help others in similar situations. Tara connected online with others whose children had undiagnosed illnesses. Money from the Emma Patmore Foundation will support the families of those children or Camp Victory, a Hershey camp for children with ventilators.

Tara hopes Emma's story also helps educate others. There isn't a lot of awareness of undiagnosed illnesses, she said. "Everyone can't believe this can happen," she said.

About one-third of special needs children have no diagnosis, according to the organization Syndromes Without A Name.

Advice: Share Tara’s story.

Read one of our hero stories, or read more from the source article by Angie Mason.

I was not a threat to anyone: Tuberculosis miscommunication

Andrew Speaker, a young, newly married personal injury lawyer, had just found out he had a form of tuberculosis that is resistant to multiple drugs that are usually effective. He felt fine – but he knew he’d need a lobe of one lung removed, and would need IV medicine almost every day for two years or so. But he thought at the time, "I was not a threat to anyone – that was the impression I was under."

The Centers for Disease Control told him they preferred that he not leave the country. He may have been told he was contagious or slightly contagious, but not highly contagious.

Andrew flew on a plane to Italy, and then returned to the U.S., later to go to an isolation room in a Denver hospital.

Now this has become the subject of intense publicity and formal investigation about the role of CDC, the Department of Homeland Security and patients about quarantining tuberculosis patients.

It seems from an interview transcript that Andrew had been told of his disease and contagiousness, but downplayed its significance, perhaps from wishful thinking. He is a highly educated person, and his father-in-law is a TB researcher at CDC. Even bright and well-informed people like Andrew sometimes don’t listen well when the stakes are so high and so personal.

Such miscommunication between patients and health care workers and providers often occurs. Perhaps the CDC staff spoke too indirectly, trying to be polite, rather than prescriptive, in saying they “prefer” Andrew should not get on a plane. Their indirect communication may have muddied their message. Or maybe Andrew just didn’t hear them.

Advice: Tape-record your doctor’s appointments so you can be sure to hear everything clearly.

Thanks, Dr. Vicki Rackner.


Read one of our patient compliance stories, or read more from the CNN transcript of an interview from an isolation room in a Denver hospital.

Patients’ Bill of Rights

In November 1997, President Clinton's Advisory Commission on Consumer Protection and Quality on the Health Care Industry, in an Interim Report, issued the Patients' Bill of Rights and Responsibilities. Donna E. Shalala and Alexis M. Herman co-chaired the 34-member Commission.

The Patients' Bill of Rights and Responsibilities has three goals: to strengthen consumer confidence that the health care system is fair and responsive to consumer needs; to reaffirm the importance of a strong relationship between patients and their health care providers; and to reaffirm the critical role consumers play in safeguarding their own health. The Commission articulated seven sets of rights and one set of responsibilities:

The Right to Information. Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals.

The Right to Choose. Patients have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care including giving women access to qualified specialists such as obstetrician-gynecologists and giving patients with serious medical conditions and chronic illnesses access to specialists.

Access to Emergency Services. Patients have the right to access emergency health services when and where the need arises. Health plans should provide payment when a patient presents himself/herself to any emergency department with acute symptoms of sufficient severity "including severe pain" that a "prudent layperson" could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Being a Full Partner in Health Care Decisions. Patients have the right to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Additionally, provider contracts should not contain any so-called "gag clauses" that restrict health professionals' ability to discuss and advise patients on medically necessary treatment options.

Care Without Discrimination. Patients have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. Patients must not be discriminated against in the marketing or enrollment or in the provision of health care services, consistent with the benefits covered in their policy and/or as required by law, based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment.

The Right to Privacy. Patients have the right to communicate with health care providers in confidence and to have the confidentiality of their individually-identifiable health care information protected. Patients also have the right to review and copy their own medical records and request amendments to their records.

The Right to Speedy Complaint Resolution. Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

Taking on New Responsibilities. In a health care system that affords patients rights and protections, patients must also take greater responsibility for maintaining good health.

Advice: Know your rights, and use them.

Read one of our access stories, or read more from the government source on your specific Medicaid and Medicare rights.

Birthday parties have been cancelled: Secrecy through HIPAA

An Emergency Room nurse in Illinois told Gerard Nussbaum he could not stay with his father-in-law while the elderly man was being treated for a stroke. Another nurse threatened Gerard with arrest for scanning the older man’s medical chart to prove to her that she was about to administer a dangerous second round of sedatives.

Both nurses claimed—wrongly--that the Health Insurance Portability and Accountability Act (HIPAA) prohibited them from helping. But Gerard knew better, as a health care and HIPAA consultant, so he stood his ground.

Recent government studies have found some health care providers apply the HIPAA regulations overzealously, blocking family members and caretakers from learning useful information. Birthday parties in nursing homes in New York and Arizona have been cancelled for fear that revealing residents’ dates of birth would be illegal.

In reality, HIPAA says health care providers may share information with others unless the patient objects, but does not require them to do so. Their disclosure of information is voluntary; the law leaves them broad discretion.


Advice to patient advocates: Stand your ground with health care providers if you need some information to help your patient.

Read another of our privacy stories, or read Jane Gross’ source story in today’s New York Times.

She couldn’t revive the teen: A tired nurse

Exhausted at the end of her third overnight shift in as many days, the nurse left the Veterans Administration Medical Center in Minneapolis and drove home.

She later told police she had worked 12 1/2-hour shifts, from 7:30 p.m. to 8 a.m., three days in a row. In her daylight hours, she had slept five or six hours one day and little more than three the next.

 And she would tell police she tried her best but that there was nothing she could do to revive the teen who was struck by her car and then thrown to her death on July 27, 2006. Less than a mile from her Farmington home, the nurse, age 40, allegedly fell asleep at the wheel of her car near a busy Farmington, Minnesota intersection. The car jumped the curb and crashed into 18-year-old Jacquelynn Devney as the summer worker weeded a sidewalk trail. A Dakota County coroner later determined that Jacquelynn, who was weeks away from starting college, died instantly.

In May, the nurse pled guilty to a misdemeanor charge of careless driving. A judge sentenced her to 100 hours of community service.

Advice: If your nurse is tired, ask the hospital’s Ombudsman or Patient Advocate for a different one.

Read another of our stories about a tired nurse, or read the source blog post.

He avoided them: Testicular cancer

Dr. Sandra Scantling’s story of her brother’s legacy:

I wasn’t always an only child. I once had a brother, Stephan Wolfe. He died of testicular cancer when he was only 35.

Stephan was nearly 6-foot-4 with an enormously powerful frame. Everything about him was large—his smile, his generosity and his heart. He seemed invincible, and he was the younger sibling. He was never sick a day in his life—or so he claimed.

He was a devoted husband and a terrific brother—but he did have one tragic flaw: He was afraid of doctors and hospitals. He avoided them.

I found out much later that he had a painless swelling in his testicular area that he apparently ignored for months. In the end, this avoidance probably cost him his life.

Stephan had his cancerous testicle removed (an "orchiectomy"). His lymph nodes were clean, and the pathologist determined the cancer—seminoma--was highly curable.

He told me that he only needed a year’s follow-up and no further treatment. No radiation. No chemotherapy. He asked for my support. "It’s my life, Sandy," he said.

After his death, I learned that he had refused further treatment, insisting in his own stubborn way that he would be fine. He didn’t want to become a cancer patient—so he chose to do it his way.

He only lived three more months.

Suffering is witnessing and supporting someone you love make decisions—or fail to make decisions—that affect the length or quality of their lives. The survivor guilt is especially painful with all of the unanswered questions of "why" and "if only."

Advice to siblings: Make sure your brothers know the signs of testicular cancer; see http://tcrc.acor.org/tcexam.html.

Pay attention to change of any kind:
Any enlargement, or significant shrinking, of a testicle;
A feeling of heaviness in the scrotum;
A dull ache in the lower abdomen or groin;
A sudden collection of fluid in the scrotum;
Pain or discomfort in a testicle or scrotum;
Enlargement or tenderness of the breasts.


Read a much happier story about testicular cancer, or read Dr. Sandra Scantling’s source story in the July 1 Hartford Courant.