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Sunday, September 30, 2007

My wife made the appointment for me: PSA test and prostate cancer prevention

Adam’s story:

My name is Adam. I’ve been diagnosed with prostate cancer at the age of 45.

There is NO cancer in my family. I had absolutely no symptoms.

In May of 2007 after some blood work from my annual physical a red flag occurred. My PSA jumped from 1.0 to 3.5 over a 2-year period. PSA (Prostate Specific Antigen) is a test that screens your levels of protein in the prostate gland to se if there is danger of cancer. The rise in my PSA led me to see a urologist who had my prostate gland biopsied. It was this test that showed I have a very aggressive cancer (Gleason 9) growing inside me. The Gleason score of 9 basically said I had the most extreme form of growing cancer and the prognosis is NOT good.

This PSA test has been approved by the FDA to be tested for men over the age of 50 unless there IS cancer in the family. For some strange reason, my internist runs the test for every man over the age of 40. HE probably saved my life. Why??? Because I was tested early and often. Most people who get a Gleason score of 9 or 10 in their 40s do not have a good chance of surviving more than 5 years. The reason is that the cancer is growing so fast that it is likely spread to other parts of the body. Because I was tested, it looks like my cancer was caught early enough so that my prognosis is better than most with a Gleason 9 in their 40s.

The irony of this is that my wife made the appointment for me. You know you get wrapped up with work, family and life. Never seemed able to make the time. I just kept coming up with excuses. Thank God she made this appointment! Don’t be like me!

Adam’s advice to middle-aged men: Make sure you get your annual check-ups and make sure your doctor tests for PSA. They are already taking blood for other tests; they can do a PSA too.

Maybe this exam will save your life or a family member or friend. It most likely saved mine.

Read another story of how a wife saved her husband.

Friday, September 28, 2007

Rats and mice get better protection: FDA and informed consent for human subjects

The case of Audine Graybill demonstrates the flaws in the system. According to the U.S. Food and Drug Administration, in the spring of 2005, she decided to try an experimental drug to treat mania associated with bipolar disorder. The consent form that she signed on May 29 said she could change her mind at any point in the study.

She checked into High Pointe healthcare in Oklahoma City, a psychiatric center owned by a psychiatrist, Dr. David Linden. On June 3, she changed her mind and asked to leave.

Dr. Linden refused to let her go.

On June 6, she was given the experimental medicine. Her lawyer, Anthony Sykes, presented a writ of habeas corpus to High Pointe to obtain her release. But the hospital staff neither obeyed it nor gave it as requested to Dr. Linden.

More than nine months later the FDA discovered many other problems there, but only this summer finally wrote a warning letter. Meanwhile, the Oklahoma Board of Medical Licensure and Supervision suspended the doctor's license.

Dr. Linden has conducted clinical trials for most major pharmaceutical companies and continues to do research, according to his website.

According to today's front-pagestory in the New York Times, Audine's experience is quite common because of lax management by the FDA.

"Rats and mice get greater protection as research subjects in the United States than do humans," said Dr. Arthur Caplan, Chairman of the Department of Medical Ethics at the University of Pennsylvania.

Advice to human subjects in clinical trials: Talk through your rights with a patient advocate or lawyer.

Read another of our informed consent stories, or read Gardiner Harris’ source story in today’s New York Times.

Wednesday, September 26, 2007

Even a girl in Nunavut: MRSA infections

MRSA is a problem everywhere; it even reaches into Nunavut, in northern Canada, west of Greenland.

Dr. Isaac Sobol, Nunavut's chief medical officer, who recently returned from Arviat, would not confirm any deaths due to MRSA in the community. But a reliable source told Nunatsiaq News that the superbug had killed a girl somewhere in Nunavut.

Dr. Sobol did say there are "several" other cases of MRSA in Nunavut, in various communities, although he did not want to say which ones.

MRSA has been widespread in Canadian hospitals since 1981. Community-acquired MRSA has also cropped up in aboriginal communities in the prairies over the past decade.

Dr. Sobol said a couple of Nunavut's MRSA cases have been linked to infection from hospital stays. However, MRSA has also struck Nunavummiut who have never been to a hospital.

In communities, most of the transmission appears to be from people with active MRSA skin infections. Studies show First Nations and Inuit are six times more likely to get MRSA at home because MRSA spreads easily in overcrowded living situations.

MRSA can be spread by direct contact such as kissing, sneezing or indirect contact, such as touching a surface an infected person has touched.

Dr. Sobol said Nunavut is taking steps to contain MRSA in the affected communities. He's prepared to ask stores in Nunavut to stock and promote the sale of hand sanitizers at reasonable prices. But containing the spread of MRSA may be difficult in places such as Arviat where there is acute overcrowding in most homes.

Advice to people in crowded homes: Don't share toothbrushes and face towels.

Read another of our grim MRSA stories, or read Jane George's source story in the Sept. 21 Nunatsiaq News.

Sunday, September 23, 2007

They called him a quack, a wishful thinker, a glory seeker: Hypothermic cooling for Kevin Everett

On Oct. 26, 1985, 19-year old middle linebacker Marc Buoniconti suffered a severe spinal cord injury while making a tackle for his college team, Citadel. He has spent the last 22 years in a wheelchair. Two weeks ago, Buffalo Bills tight end Kevin Everett injured the same cervical vertebrae while making a tackle. Doctors say Kevin will walk soon – and he can thank Marc for it.

Marc's father is Nick Buoniconti – who had been a star as a pro football player himself. Nick decided to use his own fame to raise money for a cure. He and neurosurgeon Barth Green founded the Miami Project to Cure Paralysis, the world’s largest comprehensive spinal cord injury research center. They have raised more than $200 million for research; there are now 200 scientists, doctors, and researchers under one roof.

"They called [Dr. Green] a quack, the called him a wishful thinker, a glory seeker," Marc said.

The researchers worked for years on a hypothermia cooling technique that could limit damage, if applied quickly after the trauma. They publicized their findings in a seminar by the scientific director of the Miami Project, which was attended by the team neurosurgeon for the Buffalo Bills – Dr. Andrew Cappuccino. The treatment quickly lowers the victim's body temperature to 92 degrees Fahrenheit by using an ice-cold saline solution that prevents swelling and further damage, giving drugs a better chance to work.

On Sept. 9, Kevin Everett made a helmet-first tackle in the Bills' opening game. The initial reports said he had suffered a catastrophic, life-threatening injury, and would be paralyzed permanently.

But Dr. Cappuccino had acted quickly, ordering paramedics in the ambulance to immediately start running an IV with cold saline, less than 15 minutes after the accident. This was the first time the hypothermic treatment had been used so soon after a catastrophic injury.

"The results are amazing," said Dr. Green. "And because of it, Everett will walk again."

As Marc Buoniconti commented, "I dedicated my life to raising money and awareness for getting a cure. Little did I know that the decision I made in the hospital would lead to this."

Advice to grieviously injured patients and patient advocates: Consider if there is some way you can follow the lead of Marc and his father in creating and funding an organization aimed at finding a cure for Marc's condition.

Read another hero story of a patient engineeringihis own cure, or read more from Stan Grossfeld's article in today's Boston Globe.

Saturday, September 22, 2007

A Yom Kippur Prayer on Behalf of the Sick

O Merciful God, we pray for the well-being of all who are ill.
Grant them enduring strength, and a sense of Your nearness.
Keep steadfast their faith and keep them from yielding to despair.
Grant wisdom and dedication to those who strive to bring healing and relief from pain.
Help those who share the anxiety which illness brings with it; help them to be brave and hopeful.
Grant us courage and confidence, and keep us ever mindful of those who are afflicted.
Accept our prayers, O Lord, on behalf of all those who seek You today.
Praised are You, O Lord, Healer of the Sick.

Wednesday, September 19, 2007

Before he raced off to work: Perceptive listening about ventricular tachycardia

Dr. Bernard Lown describes how he found "The Hidden Clue:"

A college president consulted doctors over a decade for ventricular tachycardia, a very serious heart-rhythm disorder. He had been hospitalized in many of this country's leading centers and more than a dozen different medications had been tried, all to no avail. On his first visit, I asked at what time of day the arrhythmia occurred. He responded that it was almost consistently in the morning, before he raced off to work. When questioned further, he stated that it happened between about 7:30 and 8:30 am.

After gathering more information, I told the patient that his problem would be solved if he set an alarm clock to 5:30 am and as soon as he awoke, took a double dose of an anti-arrhythmic medication before going back to sleep. Following this counsel for the next eight years, he was totally free of arrhythmia.

It is astonishing that no doctor had tried to identify the precise time the arrhythmia occurred. Taking a much larger total dose of the same drug at intervals around the clock, as he had been told to do, provoked many adverse symptoms without containing the arrhythmia. The reason for the failure was straightforward. His evening dose had dissipated by early morning. The morning dose was taken too close to the onset of the disordered heart rhythm for the drug to have reached an effective therapeutic blood level. Furthermore, he needed a higher dose at that time to prevent the arrhythmia from breaking through. No amount of technical wizardry could have resolved his difficult problem. The solution would never have been unearthed without the information the patient provided.

Frequently a patient not only tells what is wrong but provides information suggesting how best to manage the problem.

Advice to patient and patient advocates: Be sure you have a doctor who asks you enough questions to perceptively diagnose your condition.

Read more from Dr. Lown's essay, "The Hidden Clue," in The Lost Art of Healing.

Tuesday, September 18, 2007

Just keratosis: Skin cancer misdiagnosis

Donna Bischoff’s story

Many general practitioners (the article [“The Dark Side of the Sun” in the July/August issue of Stanford Magazine] suggested 40%) don’t correctly diagnose melanoma. My elderly aunt had a large carcinoma that was incorrectly diagnosed by a gerontologist as “just keratosis.” I specifically asked him if she should have a biopsy. He said no because he was 100% sure this was keratosis and was quite perturbed to have his diagnosis questioned. Six months later, my aunt saw a dermatologist who immediately knew she had an advanced malignant cancer.

Donna’s Advice: Patients must be proactive in their health care, and that of their loved ones. Doctors can be fatally wrong.

Monday, September 17, 2007

She walks nicely: Staph infection and payment for hospital errors

Virginia Harvey, age 47, broke two bones in her left ankle while stepping off a curb in Boston in 1996. She required two operations at Brigham and Women's Hospital. After the second surgery, her ankle became infected, in the hospital, she believes.

The staphylococcus infection ate away parts of her ankle and crept up her shin, requiring 26 additional surgeries, 15 of them at the Brigham. Eventually she switched to Beth Israel Deaconess Medical Center in Boston, where surgeons amputated her leg below the knee. The infection has caused other problems, for which she now takes medication.

Virginia testified last week on a bill now being considered by the Massachusetts Legislature (H.2226/S.1277), the Healthcare Transparency bill. She walks nicely, and you wouldn't guess that she wears a prosthetic leg and foot. That belies the suffering she has experienced over the years. In addition to her suffering are the bills: she has paid $18,000 so far out of her own pocket for the prostheses – which she will need to replace as she ages.

Insurance covered most of the cost of her care; the Brigham has not waived any of her bills. Insurers, of course, set their premiums so as to cover their payouts, so all Massachusetts residents are paying for the Brigham’s errors.

The vice president for clinical affairs for the Brigham's parent organization, Partners HealthCare, said he and his colleagues are now developing a policy on when to waive charges. Until then, he added, Partners' executives make decisions on a case-by-case basis.

Nationally, Medicare has recently formed a policy aimed at preventing hospitals from receiving payment for their errors, beginning in October 2008.

Advice to victims of medical error: Ask your state legislators if you can testify on bills to reduce medical errors. Tell your story there, and here.

Read about another patient's experience with a leg staph infection, or read more from Liz Kowalczyk's article in today's Boston Globe.

Sunday, September 16, 2007

She battled for 50 years: Restless Leg Syndrome

A creeping and crawling sensation used to keep Sheila Connolly awake for hours, and she only felt relief by standing or walking.

"It took me a long time to find out what it was," she said. "My primary care physician did not know what I had. I was sent to one neurologist who knew what I had, but did not know how to treat it. Then I was sent to a third neurologist. This [occurred] over a course of many years."

Sheila, now 67, battled the disorder for 50 years. RLS is a disorder that disturbs a person's sleep pattern. It is often under- and misdiagnosed.

With about 12 million diagnosed cases in the U.S. alone, restless leg syndrome is slowly,but surely becoming a more widely recognized condition.

"Some people will get it once a year when they take a long plane ride, some women will get it only just before their period, some people will get it just if they are very tired," said Dr. John Winkelman, Director of Sleep Health Centers at Brigham and Women's Hospital in Boston. "And then there are people who get it predictably, who get it once or twice or four times a week or unfortunately even every night."

Doctors don't know exactly what causes RLS, though they know that certain dopamine levels, low brain-iron levels, and a person's genetic make-up are contributing factors.

Medication has helped to relieve Sheila's symptoms. Other patients find that changing their daily routines and being aware of certain triggers can help.

Advice: If you feel sure something is wrong, be persistent in looking for a diagnosis. A patient advocate may help.

Read another difficult neurologist's diagnosis story, or read more from the source article by Paula Rizzo.

Saturday, September 15, 2007

Not “just the way it has to be:” Treatment of Hirschsprung’s disease

Matthew Swan is a third-grader with a rare and serious congenital condition called Hirschsprung's disease. It limits the ability of his large intestine to process food. Doctors near his Idaho home had told him to eat a high-fiber diet and use laxatives, which hadn't helped.

Matthew's mother couldn't find specialists near their home, and so had been taking him to a children's hospital in Michigan. But Matthew still got chronic intestinal infections that required frequent visits to the Emergency Room, and prevented him from attending full days of school.

"We were told that this was just the way it has to be," said his mother. She researched colorectal programs, spoke to other parents, and chose to come to Cincinnati Children's Hospital. Doctors there realized Matthew has an exceptionally rare form of the disease, and stopped the high-fiber diet and laxatives. They performed surgery and gave Matthew other forms of help to better control his bowel movements.

Staff at Cincinnati Children's Hospital see part of their job as helping each patient to live as normal a life as possible. That means helping patients like Matthew to remain continent. Not doing so would be a "glaring deficiency," in the words of Dr. Marc Levitt at CCH.

Advice to mothers: Matthew's mother was unwilling to accept the conclusion that nothing could be done. As a patient advocate, you should research alternative places to get treatment, and ask other parents, as she did.

Read more from Reed Abelson’s article in today's New York Times.

Thursday, September 13, 2007

Some little room in her mind: Dependence on alcohol

From Caroline Knapp's memoir:

Nan Robertson wrote [in Getting Better], "I withdrew in subtle ways. My husband used to say, 'When Nan gets bombed, she goes off into some little room in her mind, and pulls down the shade.'"

That line stuck with me for many years….that image had to do with the places alcohol can take you. It had to do with transportation…taking psychic flight…leaving yourself behind….A liquid makeover, from the inside out.

Alcohol melts down the pieces of us that hurt or feel distress; it makes room for some other self to emerge, a version that's new and improved and decidedly less conflicted. And after a while it becomes central to the development of that version, as integral to forward motion as the accelerator on a car. Without the drink you are version A. With the drink, version B. And you can't get from A to B without the right equipment.

Advice to readers who drink: Find a person who can help you learn to get from version A to version B without alcohol.

Read another story of recovery from alcoholism, or read our source, Caroline Knapp’s memoir, Drinking: A Love Story.

Wednesday, September 12, 2007

Testimony on Massachusetts Legislation Allowing Clinicians to Apologize for Errors

The Massachusetts Legislature held hearings today on the Healthcare Transparency bill. Here is my testimony on a provision allowing clinicians to apologize for errors without worrying that the apology could be used against them in a lawsuit.

Thank you for the opportunity to speak.

I’m Ken Farbstein. As a consultant, I helped my multi-hospital system client win the $25,000 Premier award in hospital medication safety. I'm a father and husband, and have seen my father-in-law die from a fatal medical error, which was easily preventable. I coach patient advocates in my own business. I've documented 250 stories of medical errors, all preventable, on my blog, PatientSafetyBlog.com

I strongly support this bill. I'll focus on the provision that allows doctors and nurses to apologize for an error.

There are 4 reasons why it's vital to encourage apologies by doctors and nurses.

First, apologies will allow openness that will ultimately result in better understanding of how to prevent similar errors. Now, it's taboo to talk about errors, so they're hidden and doctors and nurses can't learn from them. They're ashamed, and they can be sued and fired, for admitting an error, so they don't. And they don't tell their colleagues how to prevent those errors. So other doctors and nurses make the same errors, with the same tragic results.

Second, allowing apologies will allow the victims of medical error to regain their trust in doctors and nurses. In the stories I hear from medical error victims, they often say that the lack of any apology adds insult to injury. It destroys their trust in their doctors and nurses. And they have to depend on doctors and nurses for the rest of their lives! It’s terrifying for a patient to know the doctor or nurse made an error, and won't admit it – it makes the patient think the same thing will happen again. Over and over we hear, "No one took responsibility!"

Third, apologies will help heal the "second victim" of the error – the clinician himself or herself. We can harness the energy from the shame and self-loathing that doctors and nurses feel, and use that to fuel their work in improving the treatment system. That's what we did at CareGroup; we got providers talking about their errors – that was crucial. Allowing doctors and nurses to apologize lets them take a step in that direction.

Fourth, apologies can cut healthcare costs. The lack of an apology is often the straw that breaks the camel's back, and motivates a victim to become a plaintiff in a medical malpractice suit. With genuine apologies, patients will feel less aggrieved, and less likely to sue their doctors and nurses. There may be lower malpractice payouts, and the savings could ripple through to patients and payers.

In conclusion, these apologies by doctors and nurses will reduce future similar errors, rebuild the trust of victims, help heal ashamed doctors and nurses, and may reduce costs.

Please ensure that this bill keeps this vital provision that lets doctors and nurses apologize without fear that the apology will be used against them in a lawsuit.

Monday, September 10, 2007

She ran a marathon while on chemotherapy: Incurable liver cancer

Jane Tomlinson, a mother of three, passed away on September 3 from liver cancer, seven years after hearing she had six months to live.

Weeks after learning of her terminal illness, she joined a gym. Two and a half years later, she became the first known person to run a marathon on chemotherapy when she completed her second London Marathon. The next year, she became the first woman with incurable cancer to complete an Ironman Triathlon – a 2.4 mile swim, followed by a 112-mile bicycle ride, and ending with a 26.2 mile marathon. Her final big challenge – another success – was to run from San Francisco to New York, last year.

Jane raised $2.5 million for charity.

Advice: Learn from Jane’s strength.

Read a happier story of an endurance athlete’s survival from cancer, or read Kate Kelland’s source story in the Sept. 10 issue of the Boston Globe.

Sunday, September 9, 2007

Mischief in the waiting room at 4 am: Ideal micropractice

Kristy Dyer's story:

A year ago, my three year old woke us up screaming in the middle of the night. Not tantrum-screaming, bloody-murder screaming. We turned on the lights, picked her up, found the favorite blanket, and tried to hold her writhing body. After about 20 minutes, without so much as a pause for air on her part, we called our pediatrician's after-hours number. This connected us to a switchboard who asked us several questions (date of birth, weight, etc) who then transferred us to a pediatric-nurse hotline, who then asked the same questions. She unhelpfully suggested we undress her to see if we saw anything on her body (hard to do with a screaming-writhing kid), then confessed she had no idea what to do and we should probably take her to the emergency room "just in case". I asked which hospital to take her to. "The nearest one" she replied -- at which point I discovered that this nurse was in Wisconsin (we, and our pediatrician live in New Mexico). We bundled the now-naked screaming kid into the car and took off.

My daughter fell fast asleep in the car on the way to the emergency room. She stayed that way through the first two hours of our wait (I wasn't upset with the wait -- I was relieved she'd quit screaming and we certainly no longer looked like any kind of emergency) and then started causing mischief in the waiting room at 4 AM. Four hours after we arrived we gave up and went home, mostly exhausted but slightly uncomfortable about the lack of medical feedback that our kiddo was going to be OK.

The next day the assistant to the nurse who assists our doctor called us (evidently they keep track of who uses the rent-a-nurse line) to see if we were OK. She tentatively suggested it might have been gas(!) or a nightmare(!) but didn't know for sure, not being medically trained. She also didn't offer us an appointment or a phone call to discus it with the doctor. She had no idea that the after-hours line connected to somewhere out of state. We fired that pediatrician -- or rather her practice.

Friends of ours recommended a doctor they "really liked" -- little did they tell me this was going to be a life-changing experience for our family. The first indication was her receptionist telling us that the first appointment would be for an hour, and suggesting that it would be better if we were completely well at the time of that appointment. With an hour, our new doctor had enough time to listen and take a health-history, write out ongoing prescriptions, and discuss toddler ear-infection philosophies. She takes her own call, except when someone covers for her on vacation. Standard appointments after the first are for 30 minutes and can usually be scheduled in a few days. What I call "fit in" appointments are 10-15 minutes and are usually same day or next morning. These include single issue urgent items: can you look at the baby's ear? Does she have pink eye? This family doctor understands the dynamics of infection in a family using daycare, she can check all of our throats for strep, and is gently, gradually getting us to take better care of our heath -- stress reduction here, cholesterol there. The difference continuity of care makes is enormous. Here is someone I actually trust -- she's been there for me, she knows how I think about my health and she sets me challenges -- I'm actually doing yoga and walking, rather than just thinking about it. As a single healthy 20-something, medical care played a tiny part in my life, but now as a 36 year-old with a child, this makes such a big difference in our quality of life I can't imagine moving, unless she comes with us. Oddly enough this "quality of life" effect persists outside her office. Read something scary on the web? Don't worry, we'll print it out and take it to the next visit for her opinion. Baby has a fever on a Friday afternoon? No panic. We'll treat it with ibuprofen, and if she breaks out in Dengue fever on Saturday, our doctor will be there. Someone we trust, who knows us, will answer the phone.

I've been told you can get medical treatment of this quality in large cities such as Washington DC and Los Anglos, under the name of "concierge medicine"-- you pay an annual fee $1,000-$20,000 (completely unreimbursable under your health insurance). For this you get continuity of care, same day appointments that start within 30 minutes of their scheduled time, and the pager number of your doctor. The extra money allows the doctor to see fewer patients and run a smaller practice without losing income.

But what my doctor is doing is different. She's in a solo practice; she calls it "providing a medical home for her patients." She's part of a larger group that calls their goal Ideal Micropractice. They are participating in a study by The Physicians Foundation for Health System Excellence.

I asked her what this is like from her perspective. In the old office she used to see 20-25 patients a day, then chart for 2 hours, and answer calls. Now she sees 10-12 patients each day, giving her time to care for and enjoy her relationship with patients. Unlike a group practice she does her own chores. She cleans up after herself, answers most of her own calls, call pharmacies, orders medical supplies, calls to find lost labs, and fills in forms. However, daily, it takes no more time than charting, answering calls and taking call did at the group practice. (She protests "It is still too much time!"). Her solo practice works financially because the average overhead for a family practice office is 65-70%. She's cuts this to 25-30%. So despite seeing half the number of patients, she makes (only?) 20% less than she would in a local group practice. While her solo practice is doing well, she does worry that in the long run, her practice will get squeezed to death between rising costs and malpractice, rising demands by all insurance plans for more paperwork and lower or flat insurance payments. She says she feels like she walks a thin line each day between the number of patients she can care for well, and the financial costs. (Actually her worst complaint is that she has to administer shots herself to the babies -- a chore the nurses get to do in typical group practice.)

It's not just me that appreciates the quality of care. The first visit with a newborn/new mom always includes help with breast-feeding. Teenagers don't have to explain delicate health issues to first a receptionist, then a nurse, before they get to a doctor they know and trust. She says "A lot of them call me from college with crises and news." There are about 50-70 of these doctors in the US (in addition to the small town types who have known their patients well for years).

Do these people have anything in common? Does working solo actually imply a philosophy? In fact it they do seem to hold some common truths. They don't like medicine as it's being practiced -- they don't enjoy doing it and they don't think it's good for the health of their patients. While quality-of-care sounds like a throwback to small town family doctor days, they are pro-technology -- electronic records, evidence based medicine and surveys (in particular "How's Your Health") and determined to beat costly and debilitating disease by being proactive with patient behavior (note my walking and yoga...more than I've ever done for any other doctor).

Advice: Consider a physician with this kind of micro-practice.

Read a more grim healthcare access story, or read more from the source blog post by Kristy Dyer.

Saturday, September 8, 2007

Pretty profound, huh?: DNR in the treatment decision at the end of life

In Margaret Edson's play, W;t the character Vivian is an independent, crotchety, cerebral English professor with Stage 4 ovarian cancer, and the character Susie is her nurse on the cancer ward in an academic medical center. Near the end, Susie brings Vivian an orange double popsicle to relieve her throat. Vivian breaks it in half and hands half to Susie.

Susie: Sure?

Vivian: Yes.

Susie: Thanks. [She sits.] When I was a kid, we used to get these from a truck. The man would come around and ring his bell and we'd all run over. Then we'd sit on the curb and eat our popsicles. Pretty profound, huh?

Vivian: It sounds nice.


Susie: Vivian, there's something we need to talk about, you need to think about. There just isn't a good treatment for what you have yet. I'm sorry. They should have explained this-

Vivian: I knew. I read between the lines.

Susie: What you have to think about is your "code status." What you want them to do if your heart stops.

You can be "full code," which means that if your heart stops, they'll call a Code Blue and the code team will come and resuscitate you and take you to Intensive Care until you stabilize again. Or you can be "Do Not Resuscitate," so if your heart stops we'll…well, we'll just let it be. You'll be "DNR." You can think about it, but I wanted to present both choices before [Dr.] Kelekian and Jason [the research Fellow] talk to you.

Vivian: You don't agree about this?

Susie: Well, they like to save lives. So anything's okay, as long as life continues. It doesn't matter if you're hooked up to a million machines. Kelekian is a great researcher and everything. And the fellows, like Jason, they're really smart. It's an honor for them to work with him. But they always…want to know more things.

It's up to you.

Vivian: Let it stop.

Susie: Really?

Vivian: Yes.

Susie: So if your heart stops beating…

Vivian: Just let it stop.

Susie: Sure?

Vivian: Yes.

Susie: OK. I'll get Kelekian to give the order.

Advice to patient advocates for patients at the end of life: If you need to have this tough conversation, Susie's kind words may provide an example.

Friday, September 7, 2007

You’re still going to take care of me?: Kindness in cancer care by a nurse patient advocate

In Margaret Edson’s play, W;t [Wit], the character Vivian is an independent, crotchety, cerebral English professor who has advanced ovarian cancer, and Susie is her kind, less educated nurse on the cancer ward. Near the end, Susie gives Vivian an orange popsicle for her raw throat.

Vivian: Susie? You're still going to take care of me, aren’t you?

Susie: 'Course, Sweetheart. Don't you worry.

Vivian, as an aside: That certainly was a maudlin display. Popsicles? "Sweetheart?" I can't believe my life has become so…corny.

But it can't be helped. I don't see any other way. We are discussing my life and my death, and my brain is dulling, and poor Susie's was never very sharp to begin with, and I can't conceive of any other…tone.

Now is not the time for, and nothing would be worse than a detailed analysis. Erudition. Interpretation. Complication.

Now is a time for simplicity. Now is a time for, dare I say it, kindness.

Read a story on compassionate nursing care at the end of life, or read W;t.

Thursday, September 6, 2007

Drive across country without a map: Misdiagnosis & medical decision-making

The patient was a boy who was very ill with a severe childhood disease called hemorrhagic shock and encephalopathy syndrome. His doctor, Stephen Borowitz, says the boy had significant neurological damage and was fed through an intravenous feeding tube.

The immediate problem was that he had a fever. But he was showing other symptoms that didn't match his condition. "He had developed diarrhea, which is extremely unusual for him, and he seemed uncomfortable," his doctor said.

So the doctors consulted Isabel, a Web-based medical technology that generates a list of possible diagnoses based on the patient’s symptoms. The computer program suggested the doctor consider gallbladder disease, which he had not thought of.

An ultrasound was ordered, and gallbladder disease was indeed the problem, and it may not have been related to the boy's pre-existing condition or his feeding tube.

"The mind can't possibly deal with the complexity of the problem that a patient presents," Prof. Larry Weed says. "What if you said, 'Let's give (doctors) eight years of geography at Harvard and then let them drive across the country without a map'?" Dr. Weed, best known as the developer of the problem oriented medical record many years ago, has developed a similar medical diagnostic tool, the Problem-Knowledge Coupler. Such electronic tools can powerfully assist doctors in diagnosis.

Advice for patients with conditions that are difficult to diagnose: Find such a program, or a doctor who uses one, or use the online Mayo Clinic resource via the link in the Resources and Links section, below on the right side of this blog page.

Read another of our Isabel stories, or read Erin Donaghue's source story in USA Today of Sept. 6.

Thanks, Andrew Law.

Wednesday, September 5, 2007

People ask if she is British: Hearing testing

Hailey Ems was born weeks early, on the floor of an upstairs bathroom as emergency medical technicians tried to figure out how to get the stretcher upstairs.

She didn't meet the developmental milestones for the first year of life: crawling, standing, and speaking her first words. So doctors tested her for cerebral palsy and muscular dystrophy, but ruled them out. Finally, when she was 14 months old, her ten-year-old brother was the first to realize the truth, saying "I don’t think Hailey can hear."

Hospitals routinely test newborns' hearing. But even that is not a guarantee that deaf and hearing-impaired babies will get the necessary early treatment. Parents of one-third of babies who fail the initial hearing screening do not bring their babies back for a more rigorous test. "If a child isn’t fitted with a hearing aid until age 2, that is when he or she will have to start learning what sounds are. If we catch kids in the first few months, we don't see delays and they do beautifully," says Anne Oyler, an audiologist with the American Speech, Language and Hearing Association.

Hailey, now six years old, received hearing aids soon after her brother's diagnosis. By her second birthday, she had cochlear implants in one ear. Within months, she had reached her developmental milestones. She'll have a cochlear implant in the other ear too.

Now she's entering a local elementary school. The only thing that sets her apart from her classmates is a small speaker for her desk and a microphone that her teachers will wear to amplify the sounds of her lessons. "When she talks, no one knows that she is deaf," says her mother. "She speaks so perfectly that some people ask if she is British."

Advice to parents of young children: Get their hearing tested so medical technology can help them reach their milestones on time.

Read Jamie Talan's source story in the Sept. 4 issue of the New York Times.

Sunday, September 2, 2007

Without questioning this intelligent woman: Angina misdiagnosis

From Dr. Bernard Lown on "Getting Doctors to Listen:"

One experience illustrates the mayhem wrought by self-diagnosis. Mrs. T., a woman in her mid-eighties, had been completely crippled by postural hypotension for the past five years. Each time she stood, dizziness and light-headedness caused a near faint. She became bedridden, burdening family and growing depressed as a result. She was on a bevy of drugs for angina that indubitably contributed to the drop in blood pressure when she stood.

On careful discussion, it was evident that this woman did not have angina; her chest pain was caused by arthritic and musculoskeletal problems.

I tried to determine how the diagnosis of angina had been arrived at, and the patient admitted to having suggested it to the doctor. Comparing notes with a friend who had experienced a recent coronary heart attack and suffered thereafter from angina pectoris, Mrs. T. grew convinced that her problem was identical. After further discussion with her sick friend, she absorbed some of the appropriate descriptive terms. On the initial visit she told the cardiologist that she was certain her condition was due to angina. The doctor, without questioning this intelligent woman, prescribed the usual anti-anginal fare. Since none of the medicines helped, more drugs were added on many subsequent visits. When she became totally disabled, Mrs. T. sought a second opinion from me. When all medicines were discontinued, the vertigo and the other symptoms disappeared, except for the chest pain, which she now took in stride.

There is no excuse for a doctor's not going beyond a patient's labeling of a problem. Nonetheless, caveat aeger, "let the patient beware.”"Avoiding the role of accomplice in self-victimization is a modest first step.

Advice: Be informed, but let the doctor make the diagnosis.

Read another happily ending misdiagnosis story here, or read more from Dr. Lown's book, The Lost Art of Healing: Practicing compassion in medicine.

Saturday, September 1, 2007

Miracles reside in comforting and healing: Dr. Bernard Lown

Dr. Bernard Lown on healing without curing

Even when cure is impossible, healing is not necessarily impossible. The miracles reside in the capacity for comforting and healing.

This was brought home to me by Mrs. J., a well-composed, articulate woman in her mid-seventies. Over the preceding five years, she had become increasingly disabled with weekly paroxysms of atrial fibrillation, although a multiplicity of tests revealed a structurally sound heart. Several drugs tried singly or in combination were largely unavailing, and a number of them caused troublesome complications. The episodes of arrhythmia left her drained for days, and fear of unpredictable recurrences circumscribed her activities and kept her homebound. As I listened to her problem, it was eminently clear to me that no stone had been left unturned. I could think of no easy measures to effect a cure, and I was therefore astonished to hear myself express a certainty of resolving her problem. I did, however, leave a clever escape hatch by indicating that it would take time.

When Mrs. J. returned some months later, the problem was largely ameliorated. I was impressed with this remarkable turnabout, though the basis was self-evident. I had reassured her that the arrhythmia, while troubling, was not dangerous, and I had discontinued many of the drugs that were responsible for a host of symptoms previously ascribed to the heart. She was now able to sleep through the night, and with more sleep, arrhythmic recurrences were reduced in severity. I had prescribed a larger dose of digitalis whenever a paroxysm did emerge, so her heart rate during the arrhythmia was slowed and the bout became more tolerable. While the fundamental problem remained unresolved, she was able to resume a normal lifestyle.

Yet I could not give myself credit for the outcome. The patient herself had largely effected the extraordinary change. She could be helped because she had become reconciled to an improvement rather than a cure. She welcomed small changes for the better and was ready to exploit these to the hilt. I could expeditiously come to grips with essentials because she was sharply focused and not hypochondriacal.

If a patient is ready to be helped, even a little, and grateful for the marginal, it enhances the doctor's commitment to fostering a relationship between equals. Only such a relationship, bonded by understanding and respect, can deepen into a true healing partnership. This encourages, in the words of Lewis Thomas,
"the capacity for affection," the essential element for healing.

Advice to patients: Be ready to be helped, even if a cure is not possible.

Read a story on physician/patient rapport, or read Dr. Lown’s book, The Lost Art of Healing: Practicing compassion in medicine.