They are not losers: Personality traits of cancer survivors

Melissa Cole's story:

Having lost someone to cancer, someone who loved life and lived it more fully than most of us, I give my appreciation to Richard P. Sloan for his article citing studies showing "no significant association between personality traits and the likelihood of developing or surviving cancer."

If a fighting spirit were key to conquering cancer, then we might want to send patients to psychotherapy rather than to a clinical trial. Perhaps it would distract us from the return on the dollar that has been invested in cancer research so far.

Perhaps it would deaden the connotation that if those who survive a potentially fatal disease are fighters, then those who succumb are not. They are losers.

We all know that this is not true. We see terrifically brave and stoic people de each day from a disease of the body that has not daunted their spirit. Please, let's drop the battleground lexicon and treat all those dealing with such serious disease with more compassion and understanding.

Read a story about a doctor who is living with bladder cancer.

Thanks to Melissa for her source letter to the editor of the New York Times of Jan. 30.

The 18-month-old developed breasts: Complementary medicine

Dr. Lester Hartman's warning:

Cautions on herbal medicine in the hands of unqualified people: Remember "Ma Huang," also known as ephedra [which was banned by the FDA in 2004]. I saw kids taking this stuff "for energy" and come in shaky and hypertensive [with high blood pressure]! I had one mother use some type of "benign" Evening Primrose oil, only to have her 18-month-old baby develop breasts, as it contained estrogen. Remember Foxglove gave us Digitalis, and when a doctor played around with it he discovered that at a certain dose the patient’s leg swelling went away – but a higher dose, and the patient died….


Read another story about dangers of non-prescription medicines. Thanks to Dr. Lester Hartman as the source.

I'm happy to give you a free blood test: A tetanus shot injection error

Ellen Kagan's story:
At the end of my visit with my new primary care doctor, he asked me if I wanted a tetanus shot. I acquiesced. He went to get the syringe and came back very quickly, shoving it into my arm. Pulling it out as if he had hit a live wire, he exclaimed, "My God! I forgot the serum!"

I stared at him blankly, totally losing my ability to breathe and to comprehend what he had just said to me. Then I started to understand and I became terrified, starting to shake uncontrollably, in my Johnny and my legs dangling over the side of the table. All I could think was, "Where did that needle come from? Did he just give me AIDS?" And, unbelievably, because my mind was completely frozen, I allowed him to come back and insert another needle into my arm, this time with serum.

Dazed, I quickly got dressed and met him in his office, where he told me that I was in great condition. "Sure," I thought, "if you didn't kill me just now!" I could hardly say a word to him – I think I responded in monosyllables – and then ran as fast as I could out of his building.

I was so traumatized that I did not tell anyone what had happened to me. I just could not process it and felt sure that I was going to die. AIDS was a major topic at this time – 1993 – and everyone had heard horror stories of patients, as well as doctors and nurses, contracting it through contaminated needles.

Finally, three weeks later, unthinking, I blurted it out to my friend, Joe, who was stunned and cried, "My God, Ellen, that doctor could have killed you. That's how prisoners get rid of themselves in jail. They inject air into their veins!" Luckily for me, the tetanus shot goes into your muscle or I would have been dead instantaneously in the office of my doctor, a Harvard Medical School Professor of Medicine.

Later, to get my medical record, I made the trek back to his office, a place that I never wanted to see again. When I arrived, he was innocence itself when he greeted me and, instinctively, I understood that his attitude was a cover of his fear of what I would do about the tetanus shot. Focusing all his attention on me, he asked, "Why don't you want to come back to me, Ellen?"

I was certain that he already knew my answer, but that he was hoping that I had brushed off the terrifying incident. Moreover, by questioning me in front of his patients, I believed that he hoped that I would be too embarrassed to confront him. Clearly, he did not know me, and, undaunted, I said in as loud a voice as I could summon, "Well, Doctor, you almost gave me a heart attack when your tetanus shot had no serum. I was scared stiff – I still am – that you gave me AIDS. Where did your needle come from?"

Calmly and coolly, as if he were asked this question every day – and maybe he was – he said, "Oh, Ellen, that needle was perfectly fine. To prove it, I'm happy to give you a free blood test!" I looked at him in amazement. Did he really think that I would let him near me again and that I would trust his results? I declined his offer and was out of his office as soon as possible, grateful that I was still alive to tell the tale.

I have one regret about this incident: I did not report the doctor to the Mass. Board of Registration in Medicine. My beloved doctor Hank had protected me from the dark side of medicine, and I was a novice in Medicaland. As a result, I believed that the tetanus shot mistake was an aberration and that it would never happen again.

Today, though, I know that these horrors happen all the time. Therefore, I would be proactive and make public these terrible events. By not taking such a stance, I allowed an incompetent doctor to continue to practice very bad medicine and, perhaps, cause grievous harm to many more of his patients.

Read a story about a vastly different way that another culture prevents tetanus.

Thanks to Ellen Kagan for authorization to reprint this excerpt from her book, Ellen in Medicaland: True Stories of How I Fell Down Medicine's Black Hole and Still Lived After All.

What he didn't tell Ken: A lawsuit over wrong side surgery

It started as a typical work-related injury and trip to the doctor for Ken Plants, age 53, of Bristol, Wisconsin, but escalated into a life-altering situation.

Ken, a carpenter superintendent, was used to aches and pains but this was different; this required medical attention. Ken's neurosurgeon informed him that he had a bulge on the right side of a disc in his lower spine and that it was causing pressure on a nerve, ultimately affecting his right leg. The physician informed Ken that surgery was required but it's what he didn’t tell Ken that would end up hurting his patient the most.

"The overwhelming majority of doctors in this community provide excellent care," said Frank Crivello, one of the attorneys with Warshafsky Law Firm who represented Ken. "We turn down more than 95% of the medical malpractice claims that cross our desks. But sometimes doctors make mistakes that could have been prevented and, on the very rare occasion, a doctor does something amiss and then isn't up-front about it with his or her patient. Those are the cases we take on."

On February 26, 2004, the neurosurgeon operated on Ken to relieve the pain on the right side of his body. When Ken woke from surgery, he felt something he never felt before—pain on the left side, shooting down his leg, with numbness, loss of feeling, and a stabbing sensation - and it was getting worse.

The surgeon told Ken the surgery had been completed on the right side of his body, but subsequent records—a vague operating report and follow-up MRIs, CT scans and second-opinion doctor visits—would prove different. The surgeon had removed tissue from Ken’s healthy side, leaving him both with his initial pain and new discomfort on his left side.

"Because the surgeon never told Ken what really happened in the operating room, Ken spent the next months at follow-up appointments trying to pinpoint the cause of his new pain," added Ted Warshafsky, the founder of Warshafsky Law Firm. The surgeon "wasted the window of available time to fix Plants original injury and then left his patient with permanent damage in two areas. That shouldn't have happened and that's why we spent five years representing Plants."

The surgery had hit the S1 nerve, preventing Ken from working in carpentry again. He walks with pain in both legs forever because the surgeon never told him he'd operated on the wrong side. He lives with a morphine pump permanently implanted into his back that delivers medication to his nerves.

"There were so many difficult times over the past five years," explained Ken. "Physical pain. Emotional pain. But the scary thing is knowing that I'm not the first person this type of thing has happened to. I'm glad that I have a chance to tell people what happened to me. Hopefully my story will help somebody else."

Records from the Wisconsin Association of Justice state the number of medical malpractice cases filed is declining, and of those, only a small percentage of cases actually make it to trial. The Wisconsin Medical Mediation Panels indicate that 150 medical malpractice cases were filed in 2007, down 34% from 1996. Data collected by Randy F. Sproule, administrator of Wisconsin's Medical Mediation Panels, reveal that of the 30 cases that made it to trial in 2007, only five resulted in verdicts favoring the plaintiff.

Advice to victims of a surgical error: Sometimes you need to file a lawsuit to get justice.

Read another story about wrong side surgery. Thanks to Kimberly Stobb for the source story, a press release from the Warshafsky law firm in Milwaukee.

A pound of prevention: Overtreatment

President Franklin D. Roosevelt died at age 63 from uncontrolled high blood pressure. In those days it was not recognized as a medical problem. If he had lived today, he would have almost certainly been treated with drugs that would control his blood pressure, giving him extra years of life. High blood pressure is called "the silent killer" because it causes no apparent symptoms or discomfort. Clearly, the drugs are useful to people with high blood pressure.

But for people with only mildly elevated blood pressure, or readings at the upper limit of normal, now called "prehypertension," the risks of harm from the disease are very low. The risk of harmful side effects from the drugs may outweigh the risk of the disease, especially for the elderly.

Once experts have drawn a line in the sand that separates "health" from "disease," we forget that there are shades of gray, and often no real sharp dividing line exists.

Advice for those receiving drug prescriptions for conditions with no apparent symptoms: Do your homework about the tradeoffs of the drugs, and discuss them with your doctor. As Dr. Abigail Zuger says, "a pound of prevention is worth a closer look."

Read another story on drug side-effects in the elderly.

Thanks to Dr. Abigail Zuger for her source article in the New York Times of Jan. 25 about the book Making People Sick in the Pursuit of Health, by H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin.

To spare him pain: Healing by doctors through symbolic action

My son will turn 21 in a few days, and he's a fine, healthy young man, now bigger than me. He was born prematurely, and spent the first few weeks of his life in a NICU (neonatal intensive care unit). For such baby boys, Jewish law required that we delay his circumcision, normally performed on the eighth day of life, until after he arrived home. The circumcision was performed routinely, and was only notable for the number of my doctor friends in attendance who discussed their preferred techniques of circumcision. Other than that creepy conversation, it was a joyful event. Such a bris symbolizes the continuation of God's covenant with mankind, just as the Jewish patriarch Abraham first performed on his own son under God's direction.

In today's New York Times, Dr. Mark Litwin movingly describes how he performed a circumcision for a newborn boy, far less healthy than my son, who had just passed away. The parents had requested that it be performed after he passed away, to spare him any unnecessary pain. Dr. Litwin performed the bris so the parents could mark the baby's brief life "before being wrapped in the ancient tradition of his ancestors." Two years later, the couple bore, and circumcised, another son, a healthy one.

Sometimes doctors' symbolic actions like that circumcision can help people heal. Two very different examples come to mind. First, sometimes emergency personnel might persist with resuscitation efforts they know are hopeless, so the family will know that everything possible has been done to try to save the patient. That could clear the minds of the grieving family from dwelling on a painful question. Another type of symbolic action is a doctor's use of a placebo, given to stimulate healing without a pharmacologically effective drug. Dr. Litwin's essay shows that doctors have powerful, subtle, non-medical ways to symbolically help in healing.

In a bewildering scene: Redefining heroicism at the end of life

Bart Windrum's excerpt:
Heroicism lies at the root of the efforts we engage in to extend life. Without much questioning, we consider heroic activity to include resuscitation efforts, plus all those activities during those last weeks of life in which we pull out all the medical stops in the hospital. This "heroicism" invokes all the forces that make this time and this experience a crucible: all the emotional, spiritual, religious, medical-technical, moral, legal, and financial factors commingling in a compressed time frame.

As we've seen, the patient-family is caught up in a bewildering scene, subject to the array of problems unique to this time and place. We've explored those problems'' severe consequences.

Why engage in heroics? The obvious answer is because we don't want to die or our loved one to die. But why not, if we, if they, have lived full lives?

Less obvious answers relate to the role we give to heroicism in our lives. We may believe that it's our duty to fight to live. Some subscribe to religious beliefs regarding the sanctity of life, which governs the choices deemed acceptable.

Common to these beliefs is the largely unexamined notion that the only time and place constituting heroic action are the very last weeks of life under end-stage conditions. That's when we will engage in heroic activity to satisfy the requirements we believe we must satisfy.

But what if we have already satisfied those requirements? What if we've already acted heroically and have done so for years, perhaps decades?

I propose that the weeks of a terminal hospitalization are not necessarily the time for heroics. These weeks are beyond any requirement for heroicism. They represent a final phase of life, the transition to death (if we let it be), otherwise a time of last-ditch craziness if we pursue medical technology in a hospital setting. Medical professionals use the concept of futility. Futile it may be; crazy-making it most certainly will become.

The very good news is that accepting a reframe of what constitutes heroics does not deny heroics, for we have already engaged in heroicism! We've engaged in heroic action from the moment we first fight back against our first serious ailment!

Heroics begin when we undergo our first cardiac bypass. Or hip replacement. Or dialysis treatment. Or chemotherapy. We do not give up or give in.

No matter how ordinary any of these representative procedures (and others of similar extent) may be for professionals who conduct them, they are not ordinary for individuals undergoing them. Nor are the efforts and accommodations that follow. My father's last nineteen years represent a time of increasing heroicism: a repeat bypass ten years after an earlier bypass surgery; maintenance angiograms and angioplasties; years of pill-taking, including popping the occasional nitro for cardiac abnormalities; twice-daily management of water retention by the drug- induced shedding of copious amounts of urine—a process requiring two five-hour, home-bound sessions seven days a week to stay in proximity to the bathroom (meaning that Dad's out-of-house activities were scheduled around those sessions, every day, year after year), and more.

These and similar actions are heroic actions, and undertaking them satisfies the human imperative to fight for life and to sanctify the life we are given by Creation by not giving up on it.

During these years, everyone is heroic: the patient, the spouse who assists and accommodates lifestyle changes, the doctors who perform the procedures, the scientists who create them, the chemists who develop powerful medicines, and even the pharmaceutical companies that fund and make them available.

During these years, everybody is a good guy; everybody wears the white hat, so to speak. These are productive years, during which human bonds are cemented in memory as children become middle aged and next generations emerge into young adulthood—all witnessed, perhaps assisted, by elders whose socially productive lives have been gratefully extended by applied medical technology.

Once we stop and think about it, it's easy to see the heroicism in all who persevere in these actions, year in and year out.

And one day, each person so engaged will fail. "Crash," in medical parlance. She or he will take an insurmountable turn for the worse… from living with the disease(s) to dying from the disease(s).

That day either lands our loved one in the hospital or occurs during yet another hospitalization our loved one has embarked upon. That day, we get to choose what to do, and what not to do. That day, we decide whether to pursue curative treatment and how long to continue in the hospital, running the risk of enduring experiences we may prefer to opt out of. Or, to opt out of the path itself, and die in PEACE in a humane environment under nurturing conditions.

Or, we can choose in advance, coming to grips with our ultimate demise, and coming to peace with the rest of our lives.

Do you want a hospital to be the last place you inhabit on earth?

I imagine that the bravery required to choose against hospitalization (or rehospitalization), to choose to die in PEACE, is among the most heroic actions anyone can take. For those wanting to live the value of individualism completely, choosing against institutionalized dying makes intrinsic sense.

Read a short story about another father’s end of life decision.

Thanks to Bart Windrum for permission to reprint this excerpt from his book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization. Bart makes presentations to citizen, business, and provider audiences.

Home sweet medical home: Project ASSERT's health promotion advocates

Part of the reason home feels so sweet is because it's comfortable and familiar. The medical home has many features that have long been familiar. One is the use of health promotion advocates or coaches to advise people on changing health habits.

This was one of the key ingredients of success of Project ASSERT, first developed in 1993. In this model, health promotion advocates who are drawn from the local community advise patients in a hospital's Emergency Room on health habits and help them with referrals to substance abuse and preventive health programs. Since its birth, the program has spread beyond Boston Medical Center to Yale-New Haven Hospital, and to Athol, Children's, St. Mercy, St. Anne’s, South Shore, and Whidden Memorial hospitals in Massachusetts.

An example: A frail, 67-year-old woman came into the Emergency Department at Yale-New Haven Hospital one evening last fall complaining about terrible abdominal pain. The medical staff immediately began to search for its cause and sought to ease her misery. As the emergency medical procedures went on, Gregory Johnson, a health promotion advocate from Project ASSERT, an innovative Yale health outreach program, approached her bedside and asked her a few questions. Her answers shocked the medical staff and probably saved the woman's life.

The grandmotherly woman revealed that she was a heroin addict, shooting up the drug several times a day. While the medical staff helped relieve her abdominal pain, Gregory took advantage of the woman's health crisis to help negotiate with her about entering into treatment for her addiction. She agreed, and he arranged for her admission to an area substance abuse program. He even found her transportation to the site and followed up later to make sure she stuck to her program.

"Doctors are busy treating acute medical problems," says Gregory. "They're not thinking about a whole other realm of treatment. If I hadn't intervened, we never would have known."

Read another story on a health promotion advocate.

Thanks to Marc Wortman for his article in the Yale Bulletin and Calendar of March 8, 2002.

She'd said Yes: Adverse drug events from a desire to please the doctor

Dr. Jeffrey Schnipper's story:
A Spanish-speaking woman came in to our hospital with very high blood pressure. She was on six different medications for it, she said, so we put her on a regimen of medications that was close to that, and that bottomed out her blood pressure! (I see something like that at least once a year.) This must have been the first time her body was actually seeing all those meds. I'd asked her in my Spanish – I'm pretty fluent – and she'd said Yes, she had really been taking all of them. I asked our hospital pharmacist to contact her community pharmacy, at Walgreen's in town, and we realized that one of the meds, she hadn't been taking for two months. Another one, she hadn't been taking for four months. A third medication, she was taking about two-thirds of the time (in other words, she was filling a 30-day prescription on average every 45 days). One medication prescription had never been filled at all. The two most costly medications, she HAD been taking faithfully. When we asked her again about her medications, showing her what we now knew, she admitted that she couldn't always afford her medications, so didn't fill all the prescriptions on time. She admitted to occasionally forgetting to take them. She also admitted that she didn't really know which medications were for her blood pressure. Each time she had gone back to her primary care provider with poorly controlled high blood pressure, her doctor had added another medication to her regimen.

She really needed TWO medications, IF she'd actually take them. So we backed off to two or three, choosing once a day, relatively inexpensive medications, which controlled her blood pressure really well. We also gave her a pill box and a refill reminder calendar to help her remember to take her medications and refill her prescriptions on time.

Advice: Tell your doctors the truth; don't tell them what you think they want to hear. If you have a problem with drugs being too costly, having side effects, occasionally missing doses, or you can't get to the pharmacy, tell them, and hopefully they can work out something that suits you better.

Read another story on a patient’s non-compliance.

Thanks to Dr. Jeffrey Schnipper for the source interview.

Recent Progress by Patient Activists: Headlines

About 50 patient activists and advocates convened at the IHI Forum for a Leadership Summit in Orlando in early December 2010. We drafted a mission of broadening our coalition to measurably and continually reduce medical errors. One month later, 42 of us participated in a reunion conference call. Here are some of the headlines of the recent progress mentioned in that call on January 8 by the participants. Bravo to these patient activists!


Kathleen Clark: I've been invited to join the Ethical Pathways Task Force at the regional medical center in my county, which will be composed of hospital and clinic leaders and community representatives, which will "study/converse/explore/learn together toward a goal of making recommendations for 'ethical pathways' (i.e. organizational structures, processes, and practices) that embed ethical consciousness and deliberation through the entire healthcare system."

Alicia Cole: This Tuesday I start my first class at UCLA, taking Health Law and Compliance! Also-I will be starting an Advocate Support Group to help those who would like some encouragement and assistance dealing with the issues/frustrations of being a Healthcare Warrior. The group will be confidential. If you are interested please email my your name, address and phone number.

Ken Farbstein: Through my work leading the Consumer Health Quality Council of Health Care for All, in December, the largest insurer in our state, Blue Cross Blue Shield of Massachusetts, informed their 900,000 beneficiaries via their e-newsletter that IF they are hospitalized and their condition deteriorates, they or a family member can call for a Rapid Response by specially trained hospital staff to intervene and rescue them promptly. More information can be found at Patient Safety Blog.

Dan Ford: Continuous reminders to and pushing providers regarding quality and patient safety through my work as a health care executive search consultant and currently as a board member of ISMP (Institute for Safe Medication Practices).

Regina Holliday: I continue to work on public awareness about patient rights. Since our meeting of last month, I worked with TMIT to spread awareness of the importance of access of the medical record through a short video called "Remember the Hollidays". Voice of America put out a written piece and a video about our patient access story as well as my Patient Safety paintings. In January, I am putting together a social justice camp to introduce the health crowd to the social justice crowd in DC. I will be filming a segment with Families USA that should air before the President later this month.

Libby Hoy: January 1, 2011 marked the launch of Patient & Family Centered Care Partners. An organization of healthcare providers, administrators, patients and families who are committed to partnering to improve the quality, access and safety of healthcare. Get more information here.

Kevin Kavanagh, MD: Two Op-Eds have been published recently:

In the Lexington Herald Leader on hospital-acquired infections, and

In the Courier Journal on the High Rates of Insurance Increases.

Alan Levine: My "headline" would be the need to improve the performance of state medical boards in protecting the public from questionable/incompetent doctors.

Mary Ellen Mannix: Over a year and a half of work as the sole consumer representative panelist & writer on a clinical workgroup ended January 3, 2011. The American Academy of Otolaryngology - Head & Neck Surgery (AAO-HNS) published the first, national evidence based guideline on Tonsillectomy in Children co-authored by myself and a transdisciplinary team of clinicians.

Armando and Victoria Nahum: Safe Care Campaign has launched a new patient safety / advocacy site focusing on the prevention of medical errors called Patient Safety Partnership. If you would like to be listed as a resource within the site, please email Armando Nahum at anahum@safecarecampaign.org. with your area of focus so that we can highlight your organization to patients seeking your area of specialty.

Mary Ann Peugeot: I have presented a summary of the Conference to the Vanderbilt Patient & Family Council on Tuesday and expect to meet with the Chief Nursing Officer in early January. I am also working with Lisa Morisse on a possible seminar on Patient & Family Care.

Patty Skolnik, Citizens for Patient Safety… current project Patient Advocacy Training: "Finding Your Way Through A Safe Healthcare Journey;" Courses being given at hospitals and sponsored by hospitals. New updated medical journal with appendix from The Empowered Patient Coalition.

Trisha Torrey: My new book was published and might be of interest to those on the call: The Health Advocate's Marketing Handbook. I'll put a link from the Wiki – but if anyone wants info on it, they can find more here.

Jan Vick: SC Voices is actively involved in SC CARES and SC Mission:Lifeline initiatives. My website is here. The Ann S. Perdue Independent Autopsy Act is providing more transparency, by more autopsies being done in South Carolina.

Mary Weiss: Several bioethics professors at the University of Minnesota are pressing their Board of Regents for an independent investigation in the case of Dan Markingson with the goal of making clinical research safe for enrollees.

Bart Windrum:
- accepted an offer from Front Range Community College to teach a series of workshops on how to advocate and revisioning end of life on their main campus and at several adult communities (single family middle aged and elder continuum of care) they program for
- developing a hospital nurse survey, to launch Q1 11, intended to gain insight into the viewpoints and needs of hospital nurses with respect to patient-family proxy activities
- refined website and materials for greater emphasis on speaking
- elevated brain levels and writing output.

$52,000 for headaches: Multiple wrong-drug errors

In his fine essay in the New Yorker magazine this week, Dr. Atul Gawande described one woman as an example of a high-cost patient. She is a young migraine sufferer with diabetes, age 25. She had visited the E.R. about every ten days, i.e., 29 times, in a ten-month period, compiling bills of $52,000. She had faithfully filled her prescriptions, not missing a single renewal.

She'd take her medicine, but it wasn't working. When the headaches got bad, she'd go to the E.R. or to Urgent Care. The doctors would order CT scans and MRIs to ensure she didn't have a brain tumor or aneurysm (a blood-filled balloon-like bulge in a blood vessel), give her a narcotic injection to temporarily stop the headache, renew her prescription for imipramine if needed, and send her home. The next time she had a migraine, she'd go to the E.R. again and see the doctor then on duty, repeating the pattern. She wasn't having a primary care physician try different medications systematically to figure out how to prevent or limit her migraines.

She is an employee of a company that pays for her health care. At that company, like most, a very small fraction of patients consume a very disproportionate share of all healthcare expenses. The E.R. is the wrong place to treat people with a chronic condition like hers.

Three kinds of people could help her escape this agonizing pattern: medical providers, her employer, and she herself. First, the E.R. doctors might well have recognized her as one of their "frequent flyers." It's a shame none of them helped her get a primary care provider. (That would have gotten her better care, reducing costs by cutting the hospital’s E.R. revenue.) Second, the employer might have recognized that her medical care was poor. Indeed, the employer had hired Verisk Health to analyze their costliest patients' care, and Verisk’s research director discovered the problem in the woman’s pattern of care. It's not clear from Gawande's essay whether the unfortunate woman eventually received better care as a result of the data analysis. Third, the woman herself, or a friend, family member, or other patient advocate might have realized that her medical care was poor. Lacking that, the woman apparently took for granted that suffering in this way was her lot in life. She didn't think to advocate for herself.

Advice: If you're limited by poor health, ask an advocate if anything can be done to make your life easier.

Read another story on migraines. Thanks to Dr. Atul Gawande for the source essay in the New Yorker of January 24.

Without a single E.R. visit: The Special Care Center

Dr. Atul Gawande's description of the morning huddles by an innovative medical practice:
The Special Care Center in Atlantic City, New Jersey houses an experiment started in 2007 by the health-benefit programs of the casino worker's union and AtlantiCare Medical Center, the city's two largest employers.

Dr. Rushika Fernandopulle runs the clinic just for workers with very high medical costs. A staff meeting each morning reviews the medical issues of the patients on that day’s appointment books. Clinicians popped open their laptops and pulled up their patient lists together. A full-time social worker and the receptionist joined the doctors and nurses. Outnumbering them all were eight full-time "health coaches" from the patients' communities.

In 45 minutes the staff ran through everyone's patients. They reviewed the requests that patients had made by email or phone, and the plans for the ones with appointments that day. Staff made sure that all patients who made a sick visit the day before got a follow-up call within 24 hours, that every test was reviewed, and that every unexpected problem was addressed.

Most patients required no more than 10 seconds. Mr. Green didn't turn up for his cardiac testing or return calls about it. "I know where his wife works. I'll track her down," the receptionist said. Ms. Blue is pregnant and on a medication for high blood pressure that's unsafe for pregnant women. "I'll change her prescription right now," said her doctor, and did so.

Other patients required longer discussions. A middle-aged heart-disease patient's recent blood tests showed worsening kidney failure. The team decided to repeat the blood tests that morning, organize a kidney ultrasound in the afternoon if the tests confirmed the finding, and have him seen in the office at the end of the day.

A staff member read out the hospital census. Of the clinic's 1200 chronically ill patients, just one was in the hospital, and she was being discharged. The clinic's patients had gone four days without a single E.R. visit. On hearing this, staff cheered and broke into applause.

Read another story by Dr. Atul Gawande.

Thanks to Dr. Atul Gawande for the source article in the Jan. 24 issue of The New Yorker.

When you have to go there: The medical home

Robert Frost wrote, "Home is the place where, when you have to go there, they have to take you in."

The medical home is being highly touted. But be careful: some are much homier than others. One key consideration should be their evening and weekend hours. If they're not open for you then, they're not a home by Robert Frost's definition.

In the Boston area, Westwood-Mansfield Pediatrics, for example, offers visits until 8 pm on four weekdays, and is open on Saturday and Sunday mornings.

Read another story on the medical home.

Thanks to Dr. Lester Hartman for the source interview.

Unspicy spicy noodles: Imaginative hospital food

Executive Chef Pnina Peled at Memorial Sloan-Kettering Cancer Center in New York City faced a challenge. A young cancer patient had a craving for a unique food: "unspicy spicy noodles." So Pnina came in on her day off with a stack of cookbooks, and concocted a whole-wheat sesame spaghetti dish with sesame oil and green beans that she'd chopped fine to look like scallions.

Another young cancer patient's mother, Valerie Ramo, became convinced that Pnina had been crucial to her daughter Joely's recovery from severe aplitic anemia. Doctors had expected that Joely would need tube feeding after her bone marrow transplant. Instead, Pnina found a way to make tasty substitutes for pressed turkey and cheese sandwiches Joely asked for, a combination of strawberry daiquiri and pina colada mixers, and a "takeout" pizza in a pizza box. Valerie said that Joely ended up not needed the intravenous nutrition because Joely liked Pnina's food so much.

Now an outpatient, Joely says she looks forward to her doctor's appointments several times a week because she can eat lunch at the hospital.

Read another story on uniquely tailored healthcare.

Thanks to Shivani Vora for the source article in the New York Times of January 16.

Wow! They do care: A patient-centered medical home

Dr. Lester Hartman of Westwood-Mansfield Pediatrics sent out an email message to the parents of his patients, as part of his new initiative to get to know his patients. He is trying to get to a four-star rating on knowledge of patients by the doctor, according to patient surveys conducted by Massachusetts Health Quality Partners (MHQP).

He asks the parents, "What is important for us to know about your child?". His staff then enter the answer into the electronic medical record, in a prominent yellow PostIt area on the computer screen.

If the parent has said the child is needle-phobic, the nurse will call the parent before the visit, asking whether to give the shot at the start or end of the visit. The parents say, "Wow! They do care!"

Read another story on a patient-centered medical home.

Happy New Year: It's your medical record, but you can't see it

Two of my encounters with the healthcare system yesterday ranged from the sublime to the ridiculous. First, the sublimely good one: I went to our veterinarian's office to buy some toothpaste for my dog. When I asked for it, they asked my last name. I was given the toothpaste, and I paid for it. With the receipt, the clerk handed me a one-page printout listing the dates for Jackson's next well-dog checkup and the next three years of immunizations, with his photo and name, address, and owners at the top of the page. I was delighted: without my even asking, they gave me tailored information to keep my beloved pet healthy.

Then, later in the afternoon, the ridiculous. I brought another beloved pet, my daughter, to see a sports medicine doctor for a minor issue. I asked the clerk to see her medical record. They couldn't give it to me. Why? For privacy reasons. Whose privacy?! Well…it's policy, so we can't. Why did I want it? To do my homework in advance, and to save the doctor's time during the appointment. Following their procedure, I filled out a paper release form, to be handled by Medical Records. Could I FAX them the release, and have them FAX me the record? You'd need to call Medical Records for that. OK; I called, but could only get a recording that said they'd need 7 to 10 days to mail the doctor's progress note to me. I talked to the Practice Administrator. I couldn't get my daughter's record in advance, nor could my daughter. Well, whose record is it? It's yours, but our policy says you can't see it. Who set the policy – the Director of Nursing? No. The CEO? No, a committee.

They had me; I was stumped, and we both knew it. Those were the magic words: "policy," and "committee." That meant logic and reasonableness wouldn't matter.

Advice for a New Year's resolution for dealing with a very old-fashioned medical system: To get "your" medical record, either keep a copy of the doctor's last note about your visit, or ask your doctor's Medical Records unit, two weeks in advance, to send it to you.

Read another story on my dog's medical record.