Patient Safety Blog - Telling Our Stories

A breast cancer survivor's interview: To wring their perfectly coiffed head

2012-02-13T22:44:00.000-05:00

Question by Karen Weintraub: You talk about getting a lot of strength from other people going through treatment, people you met in hospital waiting rooms and elsewhere.

Answer by Kelley Tuthill: For me, that was a constant theme of being sick. There was always somebody who was dealing with something far more challenging than I was facing. You say, if they can face this, I certainly can do this.

Q. Was it challenging to be so public about your disease?

A. It was an incredibly positive experience to go out in Boston and have people say - even today - "how are you doing?" The flip side is some pain that the public feels, they share with me, and that's difficult, too. By going public, I've had opportunities to try to do something about [my frustration with the lack of a cure]. My coping mechanism is to try to help.

Q. Do you have any advice for people whose friends or loved ones are going through treatment now - things they shouldn't say to cancer patients?

A. That "you have the perfect head for being bald." If one more person told me that, I was going to wring their perfectly coiffed head! People mean well, but you go: Really? Really? I don't think so.

Q. People with life-threatening diseases often talk about how the challenge made them stronger. Was that your experience?

A. My life is better than it was five years ago, hands down. I appreciate life more. I have so many amazing people in my life now - and that's because of breast cancer.

Read another story about a breast cancer survivor. Thanks to Karen Weintraub for her interview of Kelley Tuthill, excerpted here from the G Section of today's Boston Globe.

The Patient Advocate's Bookshelf

2012-01-21T17:10:00.002-05:00

During 2011, these books were mentioned on the blog, in addition to mine, Getting Your Best Health Care: Real-World Stories for Patient Empowerment:

Are Your Meds Making You Sick? by Robert Steven Gold

A Sea of Broken Hearts by John James

Cooking with Arthritis by Melinda Winners 6/17/11

Ellen in Medicaland: True Stories of How I Fell Down Medicine's Black Hole and Still Lived After All, by Ellen Kagan

Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization by Bart Windrum

Overdiagnosed: Making People Sick in the Pursuit of Health , by H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin

Provider-Patient Partnerships by Helen Meldrum and Dr. Mary Hardy

Advice: Professional patient advocates should read these books.

Adverse effects of an anti-depressant: A complete 180 degrees

2012-01-20T16:46:00.001-05:00

The story of Peter Andrew Sacco, PhD:
I had a client I was seeing a couple of years ago who came to me after seeing a psychiatrist. The individual was diagnosed with obsessive compulsive disorder, generalized anxiety disorder, depression as well as aspects of personality disorders which included borderline personality disorder as well as dependent personality disorder. This client had been referred to me from a colleague/friend knowing I am a cognitive behavioural psychotherapist who also specializes in relationships, addictions, anger management and stress management. By the time I saw this client, they were in a suicidal state.

After doing a case history, I could not believe what I had witnessed. The client who was in their late 30's had no history of chronic or clinical depression and no history of personality disorders. Rating them based on global functioning and changes, I looked to major life events or changes in the last 6-12 months. Lo and behold, they had recently gone through a relationship break-up (not their choice), a recent career change (actually a better one, but one that was extremely stressful and they were learning on the job training) and some other familial upheavals. They never had a history of chronic depression, anxiety, obsessive-compulsive disorder (OCD) or violence of any sorts.

When I inquired as to when the depression and suicidal tendencies, as well as intense OCD and anxiety reached their highest levels, the answer was two weeks before coming to see me. They had been to see the psychiatrist who put them on anti-depressants, which they should not have been on for situational depression/grief, and these meds had provoked not only greater episodes of depression, but psychotic thoughts as well. The client (the responsibility falls on them for this aspect) was consuming alcohol while on the wrongfully prescribed meds. Upon getting off the meds, engaging in cognitive behavioural counselling (CBT) and stopping their consumption of alcohol, his mood state did a complete 180 degrees!

Peter Andrew Sacco, Ph.D., is a psychology professor and author of Sweet Acceptance Vs Bitter Resistance. You can email him at psacco1@cogeco.ca.

For professional patient advocacy stories in mental health, see Chapter 6 of Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Monica Foster and Nicola Williams of Ascot Media Group for setting this up.

Healthcare billing: He's pregnant, so they billed Workmen's Comp

2012-01-18T17:29:00.002-05:00

In getting my son off to college, I just ran across this story, which occurred just before he was born, when my wife Daryl was pregnant.

Ken's story, Sept. 15, 1989:

We've kept Daryl's pregnancy confidential until recently, hoping to restrict the news to a small circle of our parents, closest friends, doctors, nurses, technicians, receptionists, and medical records technicians. Imagine our surprise when the first bill was sent promptly to her employer!
Telephoning, I learned that of course, this information was not released maliciously; bills for Workmen's Compensation are always sent to the company. But wait! This wasn't an accident; it was a planned pregnancy. And the process that brought it about was definitely not industrial, mechanical, or manufactured. In short, it wasn't a Workmen's Comp claim, as should have been obvious from a cursory reading. Apparently, the billing clerk at the doctor's office somehow entered Workmen's Compensation as the payer. When the computer did not immediately reject the claim, the clerk assumed it was okay, as did the laboratory staff and hospital staff. The computer didn't express any surprise that my pregnant insured wife Daryl was "male," nor that a urine sample was claimed as an inpatient procedure, nor that Workmens Comp will not pay for pregnancy (which my wife, I hope, did not incur on the job!).

During my phone call, I tried to reach the only person whose name appeared on the bill, but she had left the hospital staff. Instead, I reached a clerk who had initialled the bill. Her spoken English was modest, so I explained: No, my wife does not have a baby. No, we didn't have a baby that died. Yes, my wife is fat, but I don't mean that she is at high risk because of it; she is getting fatter, and in a few months she will have a baby and then she will not be fat. And so on.

The story has a happy ending: our HMO was billed, so neither Daryl's employer nor we had to pay. More importantly, our son was born several months later, and is now a fine young man of 21.

I wrote this story on the birthday of my father, may he rest in peace, and I can hear his ready laugh.

Ken's Advice: Dispute your bill if you have to, and keep your sense of humor.

Read more stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Integrative medicine for pain control: He has been fired by doctors

2012-01-13T23:21:00.000-05:00

Dr. Corey Waller’s story:
M. is a 34-year-old male with a relatively normal medical history, except that he had an injury to his hand six years ago that led to complex regional pain syndrome (formerly called reflex sympathetic dystrophy). There was injury to his spinal cord, so he required relatively complex treatment, because of the pain and swelling in his arm. His pain proved very hard to control with the opiates he got from his providers. Some of them tried some pain interventions, but no one addressed how it affected his life in general, e.g., his child, or his ability to work.

He’d had continuing frequent use of the Emergency Department, and had been “fired” by multiple physicians who tried to wean him off the pain meds. So he was generally angry and frustrated as a result of that, which created a lot of defiance, making him ready for a fight in the doctor’s office or the E.D. So ultimately, he didn’t get good care.

He came here to our Center for Integrative Medicine in western Michigan . My RN case manager, our social worker, and I saw him. We identified some financial issues, so we had our financial counselor talk with him too. The social worker got at some of the psychological issues that were secondary to his pain. We went through some different approaches to his treatment, and settled on one option.

In his first week, he had three visits scheduled (we offer a lot of visits in a compressed time), and he showed up for all of them. He has called a couple of times, but hasn’t walked in, though we encourage walk-ins from our current patients.

So far, that has paid off for him; he has already been making changes in his life, like organizing some things, getting out of bed when he should, getting Physical Therapy, meeting our requirements for calling our social worker for his scheduled Touch Base calls, filling out the prior authorization paperwork for his insurer, etc. We put a lot in the patient’s hands, to make them responsible for their care as much as we can.

He has been fired by doctors, because of arguments with them. Now he’s following through. Contracts don’t work with these patients; poorly controlled pain or the disease of addiction trumps any contract with the doctor. A contract between a doctor and a patient for pain medications, e.g., that the patient won’t receive narcotics in another setting, is a way for the doctor to fire a patient, to justify letting that patient go. That’s appalling! If a patient has breakthrough pain at 3 a.m., and goes to the E.D., I see that as evidence that my treatment plan hasn’t worked, that I’m not doing my job. Instead of contracts, we give them trust. They become more trustworthy in doing their job as patients. "Don't mistake this as naivety. This approach was born from extensive experience with this population."

We don’t fire anyone. We see their behavior as a symptom. We use a lot of carrots, not sticks. One carrot for M. is that I’ll work tirelessly to handle his rare, frustrating and very real disease, i.e., I’ve done my reading in the medical literature, and have gotten the approvals from the insurer as needed. That’s doing my side of the bargain. And my social workers have talked to their counselors, and have done their homework. It has to be a team effort. If a patient calls us, we need to answer them in a timely fashion.

You have to deal with the psychiatric component as well as the medical and social components. We saw that M. had a financial problem, which could get in his way. He was smoking two or three packs a day – that’s a lot of money! We treated him for that to free up his money. We gave him nicotine replacement therapy with counseling and close monitoring.

This week, we’ll give him a choice among three pathways we’ve come up with. We’ll put together the risks and the benefits, and let him mix and match based on his concerns. We let the patient decide on the treatment plan when possible, because if the patient can choose the therapy, it’ll be more effective.

Dr. Waller’s advice: Ask the doctor: Give me three options, and tell me about their risks and benefits.

Thanks to Dr. Corey Waller for the interview, and to Liz Kidder and Bruce Rossman for setting it up.

Sharing doctors’ Open Notes with patients

2012-01-11T19:55:00.002-05:00

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.

Santa’s doctor writes: My letter to the North Pole

2011-12-23T16:51:00.003-05:00

Dear Santa,

Your lab tests came back, and your cholesterol ratios are out of line, again. As I mentioned in your physical, I’m concerned about some of your habits. For almost the entire year, you’re very inactive. Living as you do in a very isolated neighborhood in a very cold region, you don’t get out and about very much. That isolation can be very dangerous for a man of your age (or, indeed, of any age). Then in late December, you rouse yourself for a short period of supremely intense activity, logging many miles over rough terrain, and then wrestling heavy awkward bundles out of the sleigh, then climbing up icy roofs while lugging these countless loads, then forcing yourself down through narrow spaces, then hauling yourself back up, and on to the next place. For a man of your girth and your age, it’s simply too much.

I’ve explained all this at your last physical, as I do every year. I’m writing this letter out of frustration, since you never do what I say. I never hear that you’re taking the niacin I’ve suggested, or the statin I’ve prescribed, for your high cholesterol. I never see any evidence that you’ve lost weight.

To be fair, I do want to applaud you for the healthy habits you do follow. You’re exceedingly generous, and selfless, as you love giving things to people. Your belly laugh is a real gift to others, and to yourself, as it discharges a lot of the tension that might otherwise lead to high blood pressure. The affectionate attention you give to the young children brought to you by their parents is good for them, and for you. You have a definite mission in life, and you serve it diligently, which also helps. You haven’t seem to age much over the years, so it must be that these healthy habits have been giving you these long years of healthy life in your old age, counteracting the factors I mentioned earlier.

I’ve long wondered about your ruddy cheeks and nose. In many people, that’s a sign of heavy drinking: after many years of drinking, the capillaries in a person’s face rupture. But when I’ve asked, you’ve consistently denied that alcohol has been a problem for you, and I’m inclined to agree, as I’ve never heard, from you or anyone else, that your behavior has been inappropriate due to alcohol. Indeed, moderate drinking (one or two a day, for a large adult male) is a healthy behavior, so it seems that you’re OK there.

So, what is my wish for you for Christmas? Get out and about the other 11 months of the year; spread the cheer year-round. Get some more helpers, and don’t limit your deliveries of all that stuff to such a short period of time. And take the cholesterol meds!

Yes, I’ve said that before (every year, indeed) at your physical. So let’s also try something different, since that hasn’t had any effect: a shared medical appointment. I’d like to form a group you’ll feel comfortable with. I’m thinking of other altruistic people who do too much, neglecting their own health. There are lots of very driven, loving, compassionate doctors and nurses out there, for example, who are overweight and aren’t following the medical advice they know so well. I’d like to get you all together, and we’ll have some fun swapping stories. I’d like to get the group sharing some of the ways they stay healthy. They, and you, might learn from peers, and might find those ideas more compelling than following a doctor’s advice per se. That’s my wish for you.

For my own gift this Christmas, thanks, but I already have plenty of golf clubs. Give a gift for me to Heifer International, which gets farm animals to poor people around the world. Just mail them a check; don’t lug around any of their water buffaloes!

My best wishes for another year of health,

Your doctor.

Ken's Advice: As a stocking-stuffer for a parent, get Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

As though everything is a miracle

2011-12-20T23:12:00.002-05:00

This week marks the fifth anniversary of Patient Safety Blog, which I began writing in December 2006. My purpose remains the same: to advise both family and professional patient advocates how to get the best health care.

The stories in the blog have been read hundreds of thousands of times, by readers from Algeria to Zimbabwe, by patients and world-renowned patient safety leaders. The most popular post was not about human health care, but about my dog Jackson's superlative healthcare - a model for human healthcare.

Jackson's tenth birthday is today, making him sixty-something in people years. He has been actively puppyish and in excellent health, until Saturday, when, in a sudden health crisis, a disk in his spine apparently ruptured. At this point, we don't know his prognosis. He could be like a middle-aged weekend warrior who throws his back out and then heals with rest alone. Or it could be something much more serious, requiring major surgery or even wrenching end of life discussions. It seems this has suddenly vaulted him into old age. We hope that he'll continue to get superb healthcare.

I'm heartened that tonight is the first night of Chanukah, which celebrates miraculous restoration. As a favorite aunt's holiday card quotes Albert Einstein: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

Advice: Take a lesson in good health from Jackson: have a run or walk every day; get plenty of good sleep; love your family, and they'll pet you.

Prostate cancer decision-making on treatment: Would you cut off your left foot?

2011-12-19T17:28:00.001-05:00

Paul VanDevelder, a middle-aged journalist and father, learned five years ago that his PSA (prostate specific antigen) test showed a sudden spike in his PSA level, making him feel panicked. A doctor friend calmed him and had him learn a lot more. Paul learned that for 88% of men with elevated PSAs, the results were a false positive.

The prominent Dartmouth Medical School researcher, Dr. H. Gilbert Welch, explains the odd truth: "The presumption often is that anyone who has had cancer detected has survived because of the test, but that's not true. In fact, and I hate to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test." Indeed, the U.S. Preventive Services Task Force formally recommended in October 2011 that doctors stop using the PSA blood test to screen healthy men for prostate cancer.

Paul will get retested in a year, and will think carefully before any prostate surgery. He explains his decision this way to his urologist: "If your doctor told you that an asymptomatic, non-life-threatening tumor was growing on the instep of your left foot, would you cut your foot off?"

Advice to men with elevated PSA levels: Think carefully before deciding on prostate surgery.

Read about another journalist's decision on prostate cancer. Thanks to Paul for sharing his story in today's Los Angeles Times, where the full article can be found.

Diarrhea from CAT scans: Otherwise healthy, well fed and feisty

2011-12-15T16:03:00.001-05:00

Sandy’s story:
I am a 66-year-old cancer patient diagnosed with colon cancer fall 2006, treated with surgery and chemotherapy. My surgical treatment consisted of a partial sigmoidectomy; loose movements are not a post op complication or pattern. Other than some allergies, and some mild, intermittent, infrequent asthma symptoms and aging bones, I am otherwise healthy, well fed, and feisty.

Now, having had several CAT scans, and having passed the fifth anniversary of my diagnosis, the plan is for me to have no more scans unless symptoms should develop that require them.
I was a nurse in the days when the only way to diagnose diseases such as cancers was to “go in” and have “look/see” exploratory surgery. I remember when the first CAT scanner arrived in Boston and the waiting lists for the test. Scans are clearly a far more accurate, “pleasant”, and life-saving tool. Yet I have a hunch that one of their side effects might be underreported.
My first three CAT scans resulted in mild cramping and a few loose bowel movements over the course of several hours. The fourth scan led to intermittent diarrhea over 6-8 hours, with onset approximately an hour after completion of the test, making the interval significantly more unpleasant than previous years. When I shared the observation with my oncologist on my subsequent visit, it was dismissed as not meriting concern.

Prior to my fifth test I began conversing with another elderly patient in the waiting room. She revealed that she lived more than an hour away from the imaging center, and was providing her own transportation. After her previous scan she had severe, sudden diarrhea on her way home, soiled herself, and feared the same might recur. Her medical condition did not involve any problem with her colon. She had been too embarrassed to report the previous incident to her medical team.

My fifth anniversary CAT scan took place in November 2011. For scanning purposes I was asked to ingest barium sulfate. The imaging center that administered the test I believe uses readi-cat smoothies for their patient prep. My scans have usually occurred briefly after noontime.
I was taken for my scan 20 minutes early, had not even completed the second bottle of contrast, but was reassured it “would be all right”. Afterward, I reached home in about 20 minutes travel time, barely “made it” into the bathroom. I had severe bloating, explosive diarrhea, that led to my spending several hours out of the next 6-9 on the toilet. I also experienced mild nausea, cramping, intermittent sweating, late onset “headache” and my “usual” back pain. The experience was far worse than any colonic cleansing prior to previous colonoscopies. There was no sign of an allergic response such as urticaria or wheezing. I did not report the event at the time. My next medical visit is planned for early January; I will do so then.

The technician (for the first time) did tell me prior to my leaving the imaging center that I may experience diarrhea, leading me to wonder if more frequent, more serious cases of it are being reported. When I told her I was aware of the possibility and that symptoms were worse after each test, she replied that she was “not surprised”.

Discussion of the radiologic dosing with respect to scans is common. I do wonder however, at the range of acceptability in side effects for patients undergoing such tests, how often they are actually warned about their possible severity, and whether such effects are either reported or dismissed upon doing so. In a frail, ill, low body mass, or older individual living alone, an episode such as the one I had could have led to a serious medical situation, let alone a simply unpleasant one.

I believe other preparations are available. Of course no alternative is offered if there is no effective reporting and tracking of statistics indicating the need for the substitution.

I wonder how often patients are warned about the possible severity of symptoms, whether increased sensitivity with repeated exposures may be a factor, and if any plans are in place to consider that and offer alternate contrast media in any radiology centers. Of course no alternative is offered if there is no effective reporting and tracking of statistics.

Sandy’s Advice: If you have these side effects from the barium sulfate, Medline and the Mayo Clinic say that you should report that to your doctor or health care professional as soon as possible:
allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
bloating
breathing problems
chest tightness
prolonged nausea, constipation, diarrhea or pain in stomach or abdomen
fever

At the very least there should be a “call your doctor if” pamphlet given to patients. Not everyone has other ways of obtaining any or even accurate information other than from their medical care teams. Some patients for varied reasons may not question doctors, technicians, or perhaps even understand the discussion if it takes place.

Robert Gold's book, Are Your Meds Making You Sick?: Just what Santa's doctor ordered

2011-12-12T21:11:00.002-05:00

In this day and age, Santa's doctor would have him taking a statin for his cholesterol, and an ACE inhibitor or calcium channel blocker for the high blood pressure caused by the tension of meeting all those urgent customer demands. Luckily, the interactive effects, and potential adverse reactions to those and many other drugs, are discussed in Robert Steven Gold's new book, Are Your Meds Making You Sick?: A pharmacist's guide to avoiding dangerous drug interactions, reactions and side effects.

Gold, a hospital pharmacist and instructor of clinical pharmacy at Purdue University, lists 16 rules of safe medication use. In each of 30 case studies, he describes a patient, his or her symptoms, the suspect meds, a summary, the mystery to be addressed, the drug "culprit" and "accomplice," the solution, the odds that you'll encounter a problem, and advice for those taking that medication. The case studies illustrate the usefulness of the rules.

Professional patient advocates should buy this book so they can advise patients who take any of the dozens of drugs that Gold describes.

Gold's book is available from the publisher, Hunter House. Thanks to Sean Harvey for connecting us and making available a copy of the book.

Magic is for fairy tales: A useful placebo

2011-12-09T17:36:00.001-05:00

Michael Spencer's story:
Three years ago, a week before Thanksgiving, while I was sitting in my office, my chest began to throb. It was a diffuse pain, but pain nonetheless. I am a middle-aged man with the usual amount of stress (too much) and I handle it in the usual way (denial). My cholesterol and blood pressure are normal, and I exercise regularly and try to eat sensibly. Still, I have read many obituaries of "healthy" men my age who ignored chest pain. So, somewhat sheepishly, I called my doctor and explained the situation, and he told me to come right over.

He conducted a thorough examination, and then we talked. He told me I was fine, that Thanksgiving is often a tense time, and that I should relax. My pain suddenly disappeared. I have written frequently of my belief that magic is for fairy tales and science is for humans. But something about that process soothed me. Of course, it was a relief to know that I wasn't sick. But could words really banish a pain I had struggled with for hours?

After I got home, I realized that I had been given a placebo. Not purposefully, perhaps, but it had the same effect. My doctor told me that I was fine, and that made my pain go away. It also eased my anxiety at least as effectively as if I had swallowed a pill. My doctor takes an extremely science-based approach to his work. That's what makes him so good at his job. But that afternoon we engaged in exactly the type of ritual that, according to Harvard Medical School Professor Ted Kaptchuk, will have to play a critical role in the future of American health care. And, at least in this instance, it would have been hard to argue that it didn't work.

Thanks to Michael Spencer, from whose article in Dec. 12 issue of the The New Yorker this was reprinted.

Yes to biking, Yes to hiking: Heart transplants

2011-12-06T21:02:00.003-05:00

Today is the 44th anniversary of the first heart transplant in the U.S., back in 1967. Nowadays, heart transplants are safer and more common, and more complex transplants can be performed. A domino transplant is performed on patients with cystic fibrosis because both lungs need to be replaced and it is a technically easier operation to replace the heart and lungs at the same time. As the recipient's native heart is usually healthy, it can be transplanted into someone else who needs a heart transplant.

Here's the story of Andrew Wilson, a 30-something Brit who received a heart transplant in 1987:

It all started when I was ten days old and I contracted suspected Meningitis, the virus attacked my heart muscle, the doctors at Warrington General Hospital also suspected I had also suffered from a stroke leaving me with slight brain damage and a weakness down my right side.  My early life was spent in and out of Hospital's suffering from many chest infections and viruses. I was placed under heart consultant Dr. Arnold at Myrtle Street Children's Hospital in Liverpool. I was placed on a cocktail of drugs from an early age such as digoxin, frusimide aimed to stop my failing heart.  As I grew older into my childhood my condition worsened and I was un able to do the normal things kids did back then, I was a mad football fan and was unable to play football or walk very far without feeling breathless and tired.  As the years drew on it was decided to transfer me to Harefield Hospital as Dr. Arnold had told my mum (Sue) and dad (Bryan) that there was nothing more they could do and that I needed a heart transplant, so we waited for the call to go down to Harefield......

Transplant Years- The Gift Of Life!  Finally we got the call to go down to Harefield and little did my parents and myself know the life changing effects that one journey would have.... I underwent the tests and expected to be home in time for Christmas after being put on the waiting list. In the early hours of December 17th 1987 I was visited by non other than Professor Sir Magdi Yacoub and after seeing me told my mum and dad that I needed a heart transplant and there was A HEART AVAILABLE THAT VERY NIGHT!!! A young Scottish girl named Samantha Dawkins who had suffered from cystic fibrosis needed a new heart and lung transplant and had decided to donate her heart for transplantation. Both my parents were left with little time to decide on the life saving operation, but woke me later that night and told me I was going to have a heart transplant!!  Funny as it sounds my parents told me I was in high spirits as I went down to theatre, my parents then said good bye and my life was about to change.  The operation itself went on for nine hours and after a few hairy moments placing me on the life support machine the operation was a success.  I spent over six months at Harefield and in that time lived in Harefield Village in the designated flats for the patients well before Parkwood was built (on site accommodation). Eventually I was able to finally meet the young girl who had saved my life and soon enough we had struck up a friendship I was given a St. Christopher medal with the message "With All My Heart Samantha." I also gave her a golden heart locket, the gifts symbolised the bond between us.  I had expected setbacks with rejection in the early days including a biopsy which had gone wrong, a surgeon accidentally went through an artery in my neck causing blood to flow into my chest and lungs, I was then placed into intensive care where eventually I recovered.   Despite that my childhood from the age of nine changed for the better as I was finally able to play football, run in local school races and do everything my fellow friends could do, it was indeed a whole new experience and a welcome one!   Whilst down in Harefield both Samantha and myself had the opportunity to meet H.R.H. The Duchess Of York when she opened at the time the new intensive care unit.  We also appeared on such programmes as T.V.AM and Bodymatters, and were interviewed by the national newspapers,( I guess you could say we were celebs Ha..)  I also helped in fund raising for Harefield and the British Heart Foundation. Being a Liverpool fan I was also lucky enough to have my childhood dream granted and became the mascot for the reds back in 1988.

"My Heart Is Yours"  For eighteen months both Samantha and myself enjoyed a bond beyond friendship, we often kept in touch taking a holiday to Blackpool, as well as spending time together at Christmas. As time drew on Samantha unfortunately contracted a virus and desperately needed a new transplant, though sadly this time there wasn't a donor available and she died a day after her 17th birthday in 1989. I take comfort in the fact that a part of Sam still lives on inside me, and that I got to see her before she died.  After Samantha's tragic death I appeared again on T.V.A.M talking about the need for donors. Since then, though I have found it hard, I have tried to move on. I still keep in contact with Samantha's family (Liz, Roger and Jason).   Health wise I have gone from strength to strength with only my last rejection in 1993 and a heart rhythm disorder in 1996. I was then placed under Dr. Banner, I then underwent a small procedure to stop and restart my heart, thankfully it worked and with the help of medication I recovered..... Flash Back - Be Positive in Mind!

With regards to my schooling I attended Hamblett School which was a school for children with disabilities as I also suffer with cerebral palsy, I eventually left after my transplant and moved into main stream where I then moved on to college gaining a G.N.V.Q in business studies at Distinction level and also a G.C.S.E In both English Lit and Language grades A for course work and B and C for the respective exams. I also studied on a creative writing course gaining university credits though I did not take up that option.  Despite my limited school access before and after my transplant I was still able to achieve my goals within education with a positive determination that I am indeed proud of!!

Message Of Hope!  This December, is my sixteen year anniversary [this was written in 2004] and looking back I am eternally grateful to Samantha and her family not to mention all the doctors at Harefield for for their continuing dedication and support to fellow Transplants like myself. Despite some challenging times my transplant has given me and many other people years of happiness and long may it continue.....

A New Century, A New Man
I am now a singer/songwriter and was a member of the British Music Academy, I have written for Eurovision with a track called "Come Together", back in 2001 and was later aired on "Radio Merseyside" which was a huge boost. I have also written for a local arts theatre in 2002. It is now 2004 and I'm preparing to go into the studio to lay down some of the tracks I have written including an animated cartoon like track "Where Are You Now" which I hope to pass on to future publishers.  I am also a keen writer and have written both novels and poems in the past. I have decided to end the story but not the journey with a poem I wrote a few years after my heart transplant, which I hope you enjoy.  HEART TRANSPLANT  No football, no biking, No running, no hiking, Bleep goes the machine, You lie there so weak, Why is life so mean?  With the oxygen mask, Life's a uphill task, Oh donor come fast, And save me at last.  A donor is found, Put your feet on the ground, And jump up for joy, Life's changing my boy.  Yes to football, Yes to biking Yes to running, Yes to hiking, No more bleeps from that- dreaded machine, Life is better than ever it's been.  Your no longer wistful- As you run in the grass- Thanks to the gift of life, Your problems may pass.....  This poem was written when I was eleven years old and is dedicated to the lasting memory of my donor Samantha and all who have helped me through the years A BIG THANK YOU TO ALL!!! And So The Journey Continues.........

Read another inspirational heart transplant story. Thanks to Andrew for his story, reprinted from the website of To Transplant and Beyond, and to Wikipedia for the definition of domino transplant.

They assumed she was demented: Health care at home

2011-12-05T22:04:00.002-05:00

Dr. Jack Resnick's story:

I had one 83-year-old patient whose arthritis kept her from moving around, but she loved to talk about her career as a rocket scientist. One day, a well-intentioned neighbor dropped by and called 911 after finding her feverish and dehydrated from diarrhea. My patient had never been treated before at that hospital, and as a Russian immigrant, had no family here for the hospital to contact. She became disoriented; the hospital assumed she was demented and transferred her to a nursing home. It took me two months to track her down and many more to get her home, where, among well-kown attendants and friends, she became lucid again. If she had lived out her days in an institution, she would have cost Medicare a great deal of money, and her life would have been shorter and far less happy.

Patients who are treated at home by a doctor and nursing staff who know them intimately and can be available 24/7 are happier and healthier. This kind of care decreases infections, mistakes and delirium. And it is far more efficient. According to a 2002 study, for the patients treated by the Veterans Affairs' Home Based Primary Care Program, the number of days spent in hospitals and nursing homes was cut by 62% and 88, respectively, and total health care costs dropped 24%.

Thanks to Dr. Resnick, whose article in today's New York Times is excerpted here.

There is a moon shot here: Don Berwick's exit from CMS & the irrationing of healthcare

2011-12-04T20:25:00.002-05:00

In my blog post yesterday, I mentioned the sometimes ridiculously high cost of healthcare, and the resulting lack of coverage for many people.

No one wants rationing of healthcare; rationing connotes a period of barely adequate consumption in a time of war. Yet coming from the same root as "rational," rationing is the product from a conscious effort to equally and fairly share a limited resource.

Our high prices create "irrationing." Think of the harm to Deamonte Driver, a boy with a gap in his Medicaid coverage, who eventually died from an untreated toothache, to Nikki White, a young woman with cancer who was denied benefits by her insurer for her pre-existing condition of lupus, and to Natoma Canfield, an uninsured woman whose cancer was detected far too late, among far too many others. That's irrationing; irrational, needlessly cruel and jarringly wrong for the richest and greatest country on earth.

In 2009, Dr. Don Berwick told a biotechnology journal, "The decision is not whether or not we will ration care - the decision is whether we will ration with our eyes open."

Now, as he exited his leadership role over the Medicaid and Medicare programs, Dr. Berwick said, just as Americans supported manned missions to the moon without knowing the details of rocket science, they ought to support the universal health insurance law because of its ultimate destination. "We are a nation headed for justice, for fairness and justice in access to care," Dr. Berwick said. "We are a nation headed for much more healing and much safer care. There is a moon shot here."

Thanks to Robert Pear for his interview in today's New York Times.

An MRI, or a fleet of cars: High healthcare prices

2011-12-03T16:23:00.002-05:00

Of the cars I've owned over the years, my favorite was my homely first car, a pale yellow 1976 Ford Maverick with a lime green interior, which I bought, very used, from a good friend, after it had run 113,000 miles. The purchase price in 1985: $325. The car wasn't pretty, but it was rugged, and served me well.

My mother recently had an MRI in an Atlanta hospital as an outpatient. Thankfully, the MRI helped to rule out a serious condition, and she promptly got back to 100% health after a course of antibiotics. The hospital billed her Medicare plan $3,200 for the 10-minute test! The price tag was so high that I struggled to find an appropriate yardstick: it was enough to buy a fleet of ten Ford Mavericks.

When prices are that high, something has to give; not everyone will have insurance that covers such tests, and some will go without care, usually people who lack excellent insurance.

I simply refused: Non-payment for shocking medical bills

2011-10-14T17:05:00.002-05:00

John James' story:
When my son died as a result of the poor quality healthcare he received, I simply refused to pay any of the uninsured costs. For at least 6 months after my son died his cardiologists were sending their bills in his name to our home address in Houston. Even after the fact, if the outcome has been less than "advertised" let those who would bill you for poor quality care know you will make an issue of the quality if they insist on billing you.

 In another instance, I negotiated some costs with a highly recommended urologist, including the cost of pathology that would be involved. I got his estimates in writing. When the pathology bill came in thousands of dollars over the urologist's estimate, I simply sent a copy of the estimate to the pathologist and said that it would be unethical to charge me more unless he had done something unusual, which I knew he had not. That's the last I heard from the pathologist. I know what it costs to do pathology and the bill from the pathologist was outrageous.

The classic definition of the Yiddish word "chutzpah" [ pronounced "khoots-pah"] refers to a defendant who insists the judge should look favorably upon him because his murder of his parents has left him an orphan. The staff involved in billing John on these two occasions showed exactly that kind of chutzpah.

Read John's draft of The American Hospitalized Patient's Bill of Rights in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to John for sharing his story with the Facebook group, "IHI Patient Activists." John is a pathologist, and author of a moving memoir, A Sea of Broken Hearts.

MHLAC: Legal advocates for people’s mental health issues

2011-10-04T15:41:00.002-05:00

Here are two success stories:

Susan Fendell of Mental Health Legal Advisors successfully represented a woman who sees a therapist several times each week for substantial mental health care needs. The woman’s new health plan was not covering her therapist as her old health plan did because her therapist is not in the new plan's provider network. Attorney Fendell successfully intervened and the new health plan is now covering the woman’s therapy sessions.

Susan Fendell also closed the case of a man needing a prescription medication to treat his chronic mental health needs. The health plan denied coverage for the medication prescribed by his psychiatrist, wanting him to use a generic medicine to which he had had a bad reaction. Attorney Fendell advised the man on the health plan's prior authorization process and now he is receiving coverage for his medication of choice.

Thanks to Susan for providing these stories. If you live in Massachusetts, you can get free legal assistance on mental health legal matters from Mental Health Legal Advisors Committee; call MHLAC Intake at 617-338-2345 x120 on Mondays, Wednesdays, and Fridays from 8:30 a.m. to 1 p.m. You can also email them at intake@mhlac.org

Read the chapter of mental health stories in Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

That would be plenty: LotsaHelpingHands

2011-10-03T14:33:00.003-05:00

Barry Katz's story:
There was a room in my house I’d been avoiding.
My upstairs office, where I took off my husband-and-father hat and put on that of cofounder of a high-tech start-up.
For the past several months, since my wife, Carole, had died of ovarian cancer, I hadn’t been able to bring myself to do much work. But that winter morning, watching our teenage daughters, Lauren and Julia, set off for school, I noticed them laughing as they walked to the bus stop. I felt a rush of relief and gratitude that their grief was healing. Maybe it’s time for me to get back to living my life too, I thought.
I turned and headed upstairs. My office wasn’t the neatest. The business was fast paced, and I always had printouts and reports scattered all over.
One thing kept me from chaos: the whiteboard on the wall behind my desk. It was like a giant memo pad, filled with notes to myself, ideas, lists of things to do. It was empty now.
But I remembered how it looked in Carole’s last weeks, when I was struggling to be husband, dad, chauffeur, tutor, caregiver. The notes had been replaced by shorthand phrases, each a task that needed my attention in order to keep our family functioning.
I sat at my desk and exhaled. Last summer should’ve been a happy time. Carole was sick, in her fourth year of battling cancer, but experimental drug treatments had seemed to stabilize her. My business was doing well enough that I could cut back on work and look after her and our daughters.
Mornings I fixed breakfast for the girls and got them off to school. Afternoons I spent with Carole, usually at the hospital for treatments that lasted till evening. Nights I fixed dinner and helped Julia and Lauren with homework. I tried to maintain a sense of normalcy.
We were all looking forward to Julia’s Bat Mitzvah. It was scheduled for October, when she turned 13, the day, according to the Jewish faith, on which she would take her place in our spiritual community as an adult. She would read a passage from the Torah and then deliver a sermon on its meaning.
We had planned a big party afterward for family and friends. A sit-down dinner, each table with a gorgeous floral arrangement. A DJ to get everyone dancing, starting with the hora, a traditional Jewish dance.
Most of the preparation for Julia’s big day fell to me, but that was okay. The important thing was that Carole would be at temple and at the party, that our family would celebrate together.
Then one day in August while Carole was getting treatment, her oncologist took me aside. “I know you have this event coming up in October,” he said gently. “If I were you, I’d move it up.” The cancer had spread. Carole had just weeks to live. I was so devastated I couldn’t respond. It was taking all the energy I could muster to keep our family on an even keel. How would I manage now?
I had to talk to our rabbi and reschedule the Bat Mitzvah. Step up Julia’s Torah lessons so she’d be prepared on her big day. Renegotiate contracts with the caterer, the florist, the DJ. Take care of Carole. Deal with the doctors. Alert all our family and friends. And somehow prepare our girls for what was to come.
It’s is all up to you now, I told myself. You’ve got to keep it together. But I couldn’t, not always. I didn’t want Carole or the kids to see me crack. Sometimes I slipped out the door, drove down the street, parked and let the tears flow. God, I don’t know how I’ll get through this.
Maybe a week after the oncologist’s bleak news, out of desperation I called one of Carole’s aunts. “Can you come over afternoons and watch the kids while I’m with Carole at the hospital?”
“Sure,” she said. “Anything else?”
I was so relieved, I almost started weeping. “That would be plenty,” I said.
Carole’s aunt must’ve burned up the phone lines afterward, because that night my cousin Bob called. “I hear you have to move up the date of Julia’s Bat Mitzvah,” he said. “Write out what needs to be done and we’ll take care of it.” I could have hugged him. I ticked off every item on the whiteboard. “I’ll get the word out,” Bob promised.
The next day help rolled in. A friend e-mailed that he’d deal with the caterer. A neighbor said he’d contact the florist. A colleague volunteered to work things out with the DJ. That night Carole and I came home from the hospital to find a casserole on the stoop with a note from a neighbor: Thought you might like some dinner.
On the day of her Bat Mitzvah, Julia chanted her Torah portion beautifully, then spoke in her sermon of love, of family, of helping hands, of trust. Her eyes fell on Carole, seated in her wheelchair between Lauren and me.
“Today I take my place in a special community,” she said. I looked around the synagogue, at all our family and friends. Why had I thought it was up to me to take care of everything? I’d never been in this alone. I had only to ask for help, and it was there.
Carole died six days later. For a long time the girls and I were shrouded in grief. Then came that winter morning I returned to my office and looked up at my whiteboard. I thought of all the notes I’d written on it in Carole’s last weeks.
What I really wanted to do, I decided, was to make our family’s struggles count for something. I wanted to start a free online service that would help other families overwhelmed by a crisis. In a flash a name came to me, something Julia had talked about in her Bat Mitzvah sermon: lots of helping hands.
I gave up my responsibilities in the start-up to one of my partners, and within a year I launched a website: LotsaHelpingHands.com. It provides a simple way for overstressed families to reach out to relatives, friends and neighbors for help in getting through their day-to-day lives.
Each family sets up their own calendar that shows when and what kind of help is needed (like meals, rides, childcare) and lets volunteers sign up for specific tasks. It’s kind of a digital version of my whiteboard, but a lot better organized.
We have been online for five years now and helped more than 25,000 families worldwide through tough times that no one should have to face alone. And as I was so powerfully reminded the day of my younger daughter’s Bat Mitzvah, none of us does.

Read another story about Lotsa Helping Hands. Thanks to Barry Katz and Brooks Kenny for this story, reprinted from LotsaHelpingHands and the February 2010 issue of Guideposts magazine.

What We Can All Learn From Michael Jackson's Doctor

2011-09-30T11:08:00.002-05:00

Michael Jackson had what most of us think we want: utterly personal attention from a dedicated doctor, on call all the time for him alone.

Dr. Conrad Murray is now on trial for manslaughter, though no one thinks Michael's death was deliberate. What went wrong, and what can we learn from it?

Much remains unclear about exactly what happened, but I see three key lessons: Don't assume information about your medications has been communicated from one doctor to another. Keep an updated medication list. Get a family member or professional patient advocate.

This story, among those of other celebrities, is explored in my book, Getting Your Best Health Care: Real-World Stories of Patient Empowerment. There, I examine more fully the role of the medical team. This week, more information has been made public, though the conflicting accounts by the prosecutor, defense lawyer, and early witnesses make it hard to know the truth at this time. Still, some useful lessons are already emerging.

Poor communication among medical personnel

Michael’s primary care provider communicated some critical information poorly. When emergency medical technicians arrived to try to revive Michael, his primary care doctor did not inform them that he had given Propofol to Michael [according to the prosecutor]. That may have affected the way the EMTs tried to revive him. Flumazenil was used to reverse the effects of benzodiazepines like the Lorazepam that Michael had been taking. Miscommunication may have led the EMTs to administer the Flumazenil in a misdirected effort to counteract the effects of the Lorazepam, though it seems that the biggest immediate problem was actually the Propofol.

The patient's role

Michael himself seems to have played a role in at least two miscommunications. First, Michael had become addicted to another sedative, Demerol, which he regularly received from his Beverly Hills dermatologist, without telling his primary care provider. The addiction allegedly left Michael unable to sleep, sometimes for days, leading him to beg for Propofol [according to the defense lawyer]. Second, Michael had swallowed an extra dose of the anesthetic, Propofol, while the doctor was in the restroom, unbeknownst to the doctor [according to the defense lawyer].

The risk of hand-offs

     Such miscommunications of information during medical “hand-offs” among medical personnel like these are common, so patients need to be on guard. Keeping an updated medication list of each drug, its dose, and the reason you’re taking the drug can prevent errors like this. During crises, a patient advocate – either a trained family member or professional advocate – can also catch and correct the miscommunication before the patient suffers for it.

   It’s most likely that a chain of errors on the part of both Michael and his primary care provider, and perhaps another physician, were responsible for his death. Given the many drugs Michael was taking and they way he received them, it seems there were several wrong-drug, wrong-dose, and wrong-time errors.

Michael Jackson's death also raises two other issues that patients should consider:

-Behavioral health and substance abuse issues
Michael was relying on many drugs, at least one of which was habit-forming. Ideally, a concerned family member, or even Michael himself, would ask his primary care physician about his dependency, and the doctor would have some training in detecting and dealing with substance abuse. In the absence of that, lacking full knowledge about Michael’s habits, the doctor was flying blind, though neither Michael nor he seemed aware of that. (Michael called the propofol his “milk;” indeed, the drug’s nickname is “milk of amnesia.”)

-Did Michael Jackson choose the wrong doctor?
In hindsight, it’s easy to say, Yes. Beforehand, it was less clear-cut. If Michael had looked up the doctor’s public quality information in Health Grades, for example, he would have seen the doctor had received only two or three stars on a five-star scale, as rated by a small number of patients on each of ten different dimensions of care, including trustworthiness, communication skills, listening skills, whether they would recommend him to someone else, etc. At that time, the doctor had neither any malpractice activity, nor any actions by the state’s medical board, nor any formal sanctions.

Ken Farbstein, MPP, President of Patient AdvoCare, is a professional patient advocate who advises people on staying safe through healthcare crises.

Read another miscommunication story.

Thanks to Ian Lovett and Timothy Williams of the New York Times, and Anthony McCartney and Linda Deutsch of the Boston Globe, for their source articles this week.

57 American children: The flu vaccine

2011-09-15T17:02:00.002-05:00

Today is the birthday of my beloved father, may he rest in peace. It brings to mind his long work with Rotary International to raise money to eradicate polio through vaccinations.

I read just now that 57 American children who had not received the flu vaccine during the last flu season died from the flu, according to figures compiled by the U.S. Centers for Disease Control. Their deaths were easily preventable.

Advice: Pass this on to your friends with young children, who are particularly susceptible to the flu.

Read another vaccination story here. Thanks to the writers of Infection Control Today for their source story today.

She experienced relief sooner: Effects of a patient portal

2011-09-12T13:50:00.001-05:00

A story from Debbie Scammon, PhD:
I continue to be impressed with the fervor of MyChart (our patient portal) users regarding the benefits to patients of on-line access to their medical records. In one recent focus group with patients with longevity with our clinics (visits over several years), 5 of 6 participants were avid users and the other one was an admitted technophobe. The 5 users repeatedly asked how they could help the other patient “get up” on MyChart so he could start seeing the benefits. One patient dealing with migraines was excited that as she and her provider experimented with alternative medications to treat her headaches she could report after each dose how she was feeling and how the new medication was working. With this ability to share her experiences with her provider in real-time, adjustments in dosage could be made quickly and the patient experienced relief sooner. Another patient pointed out to the group that he (at home), and his provider (during a visit), could see graphs of his health status over time (back years) and thus have a better idea of how he was progressing. Yet another patient was elated that when she tried to schedule a routine preventive screening, she found by looking at her records in MyChart that it wasn’t yet time for that exam and thus she was able to avoid an unnecessary test, one that would not have been covered by her insurance. Access to her medical record on-line gave her more control over her healthcare and a feeling of enhanced self-management.

These are exactly the sorts of benefits hoped for from the implementation of our patient portal. I’ve definitely seen that patients want to help each other gain access to the portal so that they can begin to take more control over their health.

See another of Debbie's stories, on seniors' use of social media.

Thanks to Debbie Scammon for this, based on her research project, “Transformed Primary Care - Care by Design,” funded by AHRQ (U.S. Agency for Healthcare Research and Quality) Grant # 1 R18 HS19136, and led by Principal Investigator Michael Magill, MD.

Accomplishments of Massachusetts hospitals' Patient/Family Advisory Councils

2011-09-11T21:42:00.001-05:00

The Patient/Family Advisory Councils of Massachusetts hospitals have made some innovative changes. Here are a baker's dozen of them.

Developed a program in which all medical house officers now rotate through our Simulation Center, receiving didactic and high-fidelity simulation sessions on conducting family meetings. (Beth Israel Deaconess Medical Center)

Launched “Patients as Educators” program to share experiences with small groups of nurses and doctors (Dana-Farber Cancer Institute)

Reviewed quality dashboards and publicly reported quality measures (Health Alliance)

Reviewed quality outcomes and patient satisfaction data (Heywood Hospital)

Helped residents plan family participation in Chief of Service Rounds (Children’s Hospital)

Helped plan an “Appointment Buddy" program that provides volunteer assistance to families of children with special needs (Children’s Hospital)

Participated in training sessions with oncology fellows and residents, so physicians could learn directly from patients and families about the human experience of living with cancer (Children's Hospital)

Installed a Portuguese channel on inpatient televisions (Morton Hospital and Medical Center)

PFAC member became a "secret shopper" to go through the registration process, three members working with hospital staff on the registration, flow and patient handout information (Nantucket Cottage Hospital)

Re-vamped a discharge medication tool to be more patient friendly and easier to understand for patients. (New England Rehabilitation Hospital)

Developed the “Crisis in the Classroom” program, which reinforced the need for mental health services for the community. This program brings experts in child psychiatry and development together with parents and first-responders (teachers, principals, guidance counselors, school nurses, and law enforcement. (Newton Wellesley Hospital)

Helped to design 'the Joanie'- an improved hospital gown that is more comfortable. (Newton Wellesley Hospital)

Developed a process for families who wish to stay overnight to request a cot be brought up to a patient's room (Caritas Norwood Hospital)

Read another story about innovative efforts by patient/family advisory councils.

Thanks to Amelia Russo for compiling the master list, and to Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss as our Patient/Family Advisory Council work group members at Health Care for All’s Consumer Health Quality Council.

Nine months after the 2010 IHI Forum

2011-09-09T13:55:00.001-05:00

It's now nine months after the Leadership Summit at the IHI Forum in December 2010, and time to take stock again of our progress. At the IHI Forum we agreed as a group that our mission is to continually and measurably reduce medical errors, building an ever-growing coalition.

My previous updates about our progress have focused on our accomplishments as individuals; this one, for the first time, discusses our accomplishments as a group.

In the last week, a clear majority of our original group of activists/advocates (35 of the 54 of us) have signed a petition promoting transparency of hospitals' JCAHO reviews. Consumers Union and the Leapfrog Group, among other effective advocacy organizations, have joined us on the petition.

Our joint political agenda is emerging, as significant numbers of our members have also come together to spread the use of pulse oximetry among newborns, ban the use of gag clauses in medical settlements, and propose an Ad Council campaign to raise awareness.

Our Facebook group has quadrupled in size since its launch, to 197 participants.

This comes in the shadow of the tenth anniversary of 9/11. The math of our yearly toll from medical errors is grim: a 9/11 every eleven days. We have to get much better at working together. Our challenge is to plan together and collaborate with powerful organizations.

Radio Program on Getting the Right Care Team

2011-07-28T10:58:00.004-05:00

"Caregivers Stories: Getting the Right Care Team" will be broadcast live on Friday, July 29, 1 - 2 pm EST. During Ms. Hari Khalsa's radio show, Ken Farbstein will use stories from his new book to answer your questions and offer:

1. Specific tips for staying safe during medical crises;
2. A general mindset of being an empowered patient; and
3. Ways to partner with your doctors and nurses.

To hear the show on your computer via Internet radio, go to: http://www.blogtalkradio.com/healthcare-whisperer-/2011/07/29/caregivers-storiesfinding-the-right-care-team.

To offer your questions and comments during the show, call: (805) 830-8363.

Ken Farbstein, MPP, leads Patient AdvoCare in Needham, Massachusetts. He has served two elected terms as President of Health Care for All's Consumer Health Quality Council. His new book is Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute. Ken guided his multi-hospital system clients, winning IHI's Premier Award for Hospital Medication Safety.

Patient Safety Day in our Brave New World: Medical radiation

2011-07-25T15:43:00.001-05:00

In a scene in Aldous Huxley's classic, Brave New World, a technician becomes distracted by a visitor, causing her to fail to inject a vaccine, later setting up someone's death from a rare tropical disease. In that world, technology is wondrously powerful, though errors continue to occur.

One of our most wondrous technologies is medical radiation. Radiation has long been used to create images of body structures, tumors, etc. The use of radiation as a treatment in itself, via implanted radioactive seeds, IMRT, stereotactic or fixed beam, proton particles, etc., is much newer. These treatments are complex, powerful, and poorly understood, so that errors are difficult to prevent and detect. Medical radiation may be the epitome of much of medical care, whose drugs and other procedures are also complex, powerful, and poorly understood. That makes it an apt topic for Patient Safety Day.

That also makes it error-prone. The ECRI Institute put radiotherapy overdoses at the top of its list of the top ten technology health hazards. Such overdoses had caused the death of Scott Jerome-Parks, Alexandra Jn-Charles, and perhaps others we don't know about. Today, Dr. William Hendee, one of the most eminent medical physicists, presented a talk on the safety of medical radiation at a meeting of the Massachusetts Coalition for the Prevention of Medical Errors. He discussed both the use of medical radiation as a treatment itself, and in the use of diagnostic imaging (in CT scans, X-rays, etc).

Dr. Hendee's advice for people considering medical radiation treatment:
Ask a lot of questions of your radiation oncologist: Is this the best way to treat my condition? What are the alternatives? Once you've chosen, you should ask questions about the facility: Is it accredited by the American College of Radiology (ACR) and the American Society for Radiation Oncology (ASTRO)? What level of audits are done? Are the medical physicist and radiation therapist certified, accredited by the American Board of Radiation Oncology, and the American Society of Radiologic Technologists (ASRT)?

It was fine: Sleep-deprived hospital doctors

2011-07-15T14:10:00.004-05:00

Going into premature labor eight weeks early, my wife was admitted to a Harvard teaching hospital, where doctors delayed her childbirth for a week. They gave her beta dimethasone, a drug to speed the maturation of the lungs of our unborn baby. Two days later came one of the happiest days of my life, when we learned that a lab test revealed the drug had worked: my son’s lungs would be fine, and he wouldn’t need a ventilator.

Residents had affixed a band and device around my wife’s belly to measure and graph the fetal heartbeat and the contractions of her uterus. Noticing the graph showed regular peaks, I asked a young resident what that meant. She reassured me that it was fine, and I didn’t pursue it.

Then when hearing in the evening that my wife was experiencing abdominal pain, the sleep-deprived residents confidently attributed them to gas pains! Finally the next morning, a pelvic exam revealed her cervix was nearly fully dilated, ready for delivery. Exhaustion had ruined their judgment, so my wife had had to suffer labor pains for 12 hours without any pain medication.

The doctors at the Harvard teaching hospital had missed the fact that my wife was in labor! They’d ignored their device, ignored my question about the rhythmic spikes in uterine contractions, and misdiagnosed my wife’s pain.

The newest safety rules limit hospital residents to working no more than 16 hours at a time. You read right. See the OpEd column in the June 24 issue of the Los Angeles Times by Dr. Lucian Leape and Helen Haskell.

Advice: If your young doctor in the hospital looks sleepy, ask your patient advocate what to do.

Read more about staying safe in the hospital from my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

There's so much of this going around: Co-production of a diagnosis

2011-07-08T16:49:00.002-05:00

Mrs. R: I'm here because I just feel rotten.

Provider: What kind of symptoms are you having?

Mrs. R: Really high fevers. Last night it was 102. I just ache all over. And I've got this cough...It started the day before yesterday, all of a sudden in the afternoon, something just hit me like a ton of bricks.

Provider: It sounds like you have influenza. There's already a lot of this going around.

Mrs. R: I don't see how this could just be the flu. I've never had anything like this, and I can't ever remember feeling so sick.

Provider: What you have is more than just the run of the mill flu....Have you been under a lot of stress lately?

Mrs. R: Things have been tougher at home lately....My husband and I aren't getting along so well...we fight about money and he parties too much.

Provider: Let's get back to the medical reasons for the visit, but if you ever want to talk about the personal issues, I'm available.

Mrs. R: I'm just worried that this virus or whatever will keep hanging on.

Provider: There's so much of this going around. Everybody's got it this week.

In Provider-Patient Partnerships, Helen Meldrum and her co-author, Dr. Mary Hardy, discuss the case study summarized here in a section entitled, "What is it you're not telling me?" in their chapter about sensitive issues. In this case, the provider didn't learn about Mrs. R's husband's IV drug use, and so couldn't detect her possible exposure to HIV from her husband. Mrs. R had spoken quite indirectly, as many patients do, and the provider didn't understand what she hadn't told him.

Using many rich scenarios like this one, Helen Meldrum's book discusses how providers can improve their communication with patients. The book respects the messy complexity of patients' medical issues, and the frequently indirect communication by patients about their problems. The book is a practical and insightful guide for providers. Its specific prescriptions for seeing the truth among patients' murky comments are much needed.

Ken's advice for patients with sensitive issues to discuss: Rehearse what you'll say to the doctor ahead of time to clarify your concerns.

For more ways to improve communication of providers and patients, read the chapter on "Interacting with Your Doctor" in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

A lot of hurdles to jump: Do Not Resuscitate Orders

2011-07-05T15:21:00.002-05:00

A story by healthcare blogger Patricia Walling:

A man I knew wrote a Do Not Resuscitate ["DNR"] order in his 80s, before a hip replacement. That's a form you can fill out with a physician's signature to ensure that you are not resuscitated against your will after your heart or breathing stops. In the order, he included a lot of hurdles to jump before the plug could be pulled.

Years later, when his physical and mental health began to deteriorate rapidly in his early 90s, things became chaotic and stressful both for him and his children. At that point, he was dying of prostate cancer and just wanted them to let him die. Unfortunately, he had neglected the critical step of reviewing the DNR order every five years. The DNR order he had written in his 80s did not address many of the issues that became critically important in the final months of his life.

Recently a movement has begun to rename these forms "AND" (Allowing Natural Death) to emphasize through medical coding that the doctor is allowing death, rather than withholding care somehow. Having a DNR can be handy if you have been suffering from a disease for a long time, want to avoid the violence of CPR at death (which can often break ribs and other bones, especially in the elderly), or just want to be allowed to die at home rather than in a hospital. Numerous studies have found that end of life care tends to be prolonged needlessly, inflicting pain on the patient and imposing financial and emotional burdens on both patient and family, and a DNR/AND can help to alleviate those issues.

Patricia Walling's advice: Make sure to review it in detail with your doctor, appoint someone as a health care proxy, and don't forget that sometimes your wishes may change.

More than we can imagine: Massachusetts healthcare payment reform

2011-07-01T15:40:00.002-05:00

This was the testimony I delivered on June 30 to the hearings on health Care Provider and Payer Cost Trends, conducted by the Massachusetts Division of Health Care Finance and Policy:

I'm Ken Farbstein, a patient advocate with a private practice, and an author of a new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute.

Thank you, Commissioner, for the privilege of learning at these hearings, and being able to testify.

Rev. Hamilton told us that God brings us more than we can imagine. Let's imagine what payment reform will look like in practice. On Tuesday, Amy Slemmer of Health Care for All stressed the importance of transparency, as did yesterday afternoon's panel of speakers. What does that look like? In Pennsylvania, where they've had mandatory reporting of serious reportable events, that reporting has now, they can confidently say, decreased wrong site surgery, according to Mike Cohen, the head of the Institute for Safe Medication Practice. That's pretty good for patients' quality of care. And it reduces costs, because there's no need for physical therapy, prostheses follow-up visits, and so on, to try to make up for the mistake, plus the cost of doing the operation right the second time around.

What else does transparency look like? Harold Miller emphasized yesterday, as did Ray Campbell and others today, about how critical it is to get clear information on price and quality. A one-pager handed to the patient well before any surgery, stating the likelihood that a repeat operation will be needed, the cost to them, the number of similar operations that surgeon has done before, and the alternatives to surgery, would provide vital information. When we brought my dog in for a surgical decision about a lump in one of his front elbows, the veterinarian gave us very clear information about the risks, costs, and alternatives. Her information was much better than the explanations I had received about my own two surgical decisions for my eye, and for my sinuses.

Fully informed, shared decision making will get many people to choose less costly alternatives to surgery, as I did twice. The Cochrane Collaborative documented the cost savings in its recent systematic review of 58 articles in the medical literature.

Impartial patient advocates can discuss end of life decisions that are based purely on preserving dignity and the quality of life. Family members will often prefer hospice care, which is more humane and less costly than "death by ICU." My father had a long gallant struggle with Parkinson's Disease. At the end, he, and we, chose hospice care. That was definitely the right decision for his dignity and quality of his remaining life. It also saved money for the taxpayers.

Yesterday, Harold Miller told us there are 3 ways to reduce costs: prevention, preventing hospitalization, and more efficient hospital care. What do they LOOK like?

Prevention, you know about. Harold Miller also mentioned avoiding hospitalizations. Last night I went to a medical home meeting. There were pediatricians, Nurse Practitioner and another nurse educator, the office manager, 3 parents of kids in the medical practice, and me, with pepperoni pizza, Diet Coke, and champagne - to celebrate a journal article to be published on the successes of the medical home. They showed a homemade video teaching parents about a new alternative to stitches when their kid gets a deep cut. They teased the nurse practitioner who was the star of the video. Their laughter, and their warmth, is a key ingredient of the medical home. That's what home looks like. The video is about DermaBond; imagine a glue stick the doctor will use to seal a deep cut, instead of stitches. Those cuts can be treated in the doctor's office instead of an E.R. visit. No stitches need to be removed in a later visit. These, and many other changes, have enabled this medical home to reduce the E.R. use among their kids over the last four years, by one-third. That's what a medical home looks like.

Third, Harold Miller said costs are reduced with more efficient hospital care. My mother complained of radiating neck pain, so I brought her to our small community hospital's E.R. She was given a telemedicine consult with a doctor at BIDMC in Boston - a 2-way TV hookup that impressed her greatly, and ruled out a stroke promptly. That's what efficient hospital care looks like.

A patient advocate who is fully independent and trusted can help patients and their families make the difficult decisions about how to get their best health care. These images are what payment reform should look like.

How to Thrive after 35: My free! Teleseminar

2011-06-22T20:57:00.003-05:00

As I get farther from 35, I find myself writing my own owner's manual. I'd like to share the lessons I've learned about getting your best health care, from my research and interviews with public figures, and less renowned family members and other people.

So.....

FREE! - Ken Farbstein's "How to Thrive After 35" Teleseminar on Getting your best health care: Real-world stories for patient empowerment.

In this interactive audio session hosted by Roslyn Franken, Ken will use stories from his new book to answer your questions and describe:

1. Specific tips for staying safe during medical crises;
2. A general mindset of being an empowered patient; and
3. Ways to partner with your doctors and nurses.

When: Thursday evening, June 30, 8:00 pm EST

Ken leads Patient AdvoCare, advising patient advocates and individual patients during health crises.

Please write your question and register at Roslyn Franken's web site.

I see seven!: Use of social media by seniors with multiple chronic conditions

2011-06-20T15:40:00.002-05:00

A story from Debbie Scammon, PhD:

We are trying to reach our most fragile patients, the ones with multiple chronic conditions, who have extra needs for supportive care. I led a focus group a couple of weeks ago with ten patients, all over 60, all with at least one chronic condition. We thought people like that might be especially hard to reach with a patient portal. But every one of them HAD been on our portal, which we've had only since the Fall 2010. Nearly all of them had been looking up their test results there, after an appointment, to check the posted test results, because, they even said, they wanted to put them on Facebook! Why? I think so they could show off to their friends, even small successes, like: "I got my blood pressure under control!" or "I walked an extra mile," or "I lost five pounds!" They'd look forward to getting congratulated by their peers, getting accolades; they want that pat on the back. It might be more meaningful to them when it comes from someone who understands the situation they're in, even more than from a doctor.

Later on in that same focus group, one patient who'd been a patient advocate in a community organization raised the possibility that patients with similar conditions could start a peer support group. It was notable to me that they weren't dependent on healthcare providers for that; they wanted to be there to support each other. The information shared was that vital to them. For example, one member of the focus group had said, "I wish my care team didn't ask me what meds I was on every visit." Another member of the group responded, "That's because you only see one doctor; I see seven!" So the light bulb came on for the one who was objecting to the medication reconciliation; she said, "Now I get it!" They're able to explain to each other in understandable terms why things are happening with their conditions and their care. That's really powerful. That's the whole basis of social networking.

There's a great positive opportunity for using social media, especially electronic media, more generally to engage patients and facilitate their communication with each other.

Debbie Scammon's advice to seniors with several chronic conditions: Learn to take advantage of the "power of many" available from your peers both on- and off-line.

Thanks to Debbie for our interview in June 2011. See the executive summary of one of her recent articles.

Like I need another guy: Bed Buddy for arthritis pain

2011-06-17T13:47:00.003-05:00

Melinda Winners' story:

I have five forms of arthritis. I know all about pain. In my early twenties, about 20 years ago, I was diagnosed with rheumatoid arthritis (R.A.), the first form of arthritis. I was paralyzed with pain, just like a paraplegic; I couldn't walk, or roll over in bed, or pull my own pants down. My hands wouldn't work properly. You could feel the heat radiating from the joint, 12 inches away! It took many injections of morphine just to get me onto a backboard into the hospital, and many more to get me off it. They had to keep me drugged all the time. It was such pain! –nothing would relieve it!

A friend of mine, a naturalist, believed in not using any meds. One day – it was my birthday – my hip was popping. That's my sign that an episode of being paralyzed with pain is coming. We were adopting a baby, and we were on the way to see the mother before the baby was born. The hallway in the hospital was long, and my hip kept popping and popping. I said to my friend, "This is killing me! I'm going to be paralyzed with my new baby."

My friend told me she found a Bed Buddy. We used to joke about it: "Like a need a new guy!" (Carex makes them; you can put them in the freezer, or into the microwave to heat them. Dry heat makes my pain worse; moist heat makes it feel better.) So I'm arguing with her about it all the way down the hallway.

When we got home that day, it was my birthday present: the original Bed Buddy. I insisted that it wouldn't work. My hip was popping a lot, and my pain was eight or nine on a scale of one to ten, almost at being paralyzed with pain; it was horrendous. I'd once given birth to a ten-pound baby, and I'd rather have that pain – that's how painful it was.

My friend had two of them, which she took everywhere. First she put one in the microwave to heat it up, and then she alternated hot and cold ones for two hours. That night I felt better. That seemed fake somehow, because it was warm.

The next morning, I didn't get paralyzed with pain. My knees were better too, because when they started to swell, I'd used a Bed Buddy that had been in the freezer.

Rheumatoid arthritis is an immune system problem. The pain travels from one side of your body to the other, left to right. But these would really take the pain away. Now they have several products, for your neck, hands, feet, and so forth; there's one for everything. So my neck doesn't get stiff.

Melinda has written a book, available at her website: Cooking with Arthritis. Thanks to Melinda for sharing her story, and to Sarah Long for arranging the interview.

My Dad, my dog, and me: Testimony on legislation for patient engagement in decision-making

2011-06-16T11:18:00.006-05:00

Chairman Sanchez, You asked that we speak from the heart. My three-minute testimony [June 14 at the Massachusetts Statehouse] is about my Dad, my dog, and me.

I'm Ken Farbstein, past President of Health Care for All’s Consumer Health Quality Council, and the author of Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thank you for this opportunity to support "An Act Promoting Patient Engagement in Health Care Decisions," H.1495/S.1078.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, we'll make better informed choices, and sometimes we'll decide against surgery – which could save money for the whole system.

This week I brought our dog to the vet, asking about a lump on his front left elbow. The surgical consult, and the two later phone discussions, were much more clear, specific, factual, and useful than those two surgical consults I'd had about my own surgical decisions. Our veterinarian provided written materials about the preparation for surgery, follow-up, and costs, none of which the human surgeons had provided.

In a very different realm, near the end of a person's life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. He had seen his own mother's long and heart-breaking struggle with Alzheimers' Disease, and so he had written a living will, when he was age 63, still full of vim and vigor, to clearly lay out his wishes against death-prolonging treatment. That calm forethought was characteristic of the man he was. Hospice care was better for him, and for us, and it must have actually saved money for the taxpayers too.

When you go to buy a car, the dealer has to clearly display the mileage per gallon on a window sticker. When you buy a refrigerator, you can see its Energy Star rating. That gives you critical information that you wouldn't otherwise know at that moment. But surgical operations are arranged with no clear written statement of their effectiveness, likelihood of repeat operations, complication rates, alternatives, or patient satisfaction levels, not to mention their price. A one-page statement should report that information before surgery.

I think many people have the same experiences that my family and I have had, where you are presented with options about health care choices, or perhaps not presented with options but told what to do, and you feel vulnerable and unsure about how to make a decision. Shared decision-making would educate patients and their family members, and get doctors to understand patients' concerns and hopes, so that together we can come to the most appropriate treatment decisions. Many people talk about patient empowerment and patient engagement. Please pass this bill to make that a reality.

Read my book's chapter on Choosing Surgery.

From a good surgeon to a great man: National Timeout Day

2011-06-15T22:21:00.003-05:00

Today is National Timeout Day; this story marks that.

The surgeon had just finished operating on a 65-year-old woman's hand at a satellite location of a Harvard teaching hospital. Her finger had been locked in a bent position ("trigger finger"), but the wrong operation had been performed: she had had surgery to correct carpal tunnel syndrome. The surgeon realized the error as he began dictating his post-surgical note.

Here's how the mix-up happened: A nurse had marked the correct arm to be operated on, but not the incision site. Several surgeons were behind schedule, stressing the staff. Staff moved the patient to a different operating room, so the nurse who prepared the patient for surgery was not present for the procedure. A tourniquet wasn't in the O.R., so a nurse had to get one, which disrupted the documentation of the procedure. The nursing team changed in the middle of the procedure.

As a result of the error, among other changes, time-outs are now performed more carefully during surgeries to verify that safety protocols are being followed.

The surgeon acknowledged his error, and apologized for it. He has since spoken openly to raise awareness among his peers, even writing an article in the New England Journal of Medicine to teach others. As his boss says, the surgeon "has gone from being known as a good surgeon to being known as a great man."

Advice to patient advocates: Verify that a time-out has been performed before surgery begins.

Read stories about choosing surgery, surgeons, and hospitals in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Helen Haskell for distributing the source story by Marshall Allen in the June 15 issue of the Las Vegas Sun.

Accomplishments since the IHI Forum by Patient Advocates & Activists

2011-06-09T08:31:00.002-05:00

Six months after the IHI Forum in December 2010, here are the progress reports from 22 patient advocates and activists. Others have been making significant progress too; these are the 22 who met the next-day deadline.

Beth Boynton: In March 2011 I presented a brand new workshop at NYU Steinhardt's Forum on Theatre for Public Health. The title of it was "Using Improv to Develop Communication & Collaboration Skills in Healthcare Professionals". The purpose was to raise awareness and provide fun teaching methods that address medical errors resulting from poor communication and/or lack of collaboration.

Kathleen Clark: I recently had an article, entitled "The Collaborative Continuum Associated with Adverse Medical Events," published here in the International Journal of Collaborative Practices. I've planned and facilitated several dialogues in the healthcare system in the county in which I live; and I'm moving forward with my book, tentatively entitled "Bringing Healing to Law and Medicine". Lastly, I'm in the process of interviewing for a 3-month Rotary International Peace Fellowship at a university in Bangkok.

Margo Corbett: Forsyth Tech in Winston-Salem is starting two new programs in 2012, one for Patient Advocates and one for Geri-Aides. I will be teaching my course in the PA program and will be teaching the teachers of the Geri-Aide program to teach some of my material, so they can incorporate it throughout their teaching. I have finally made the contacts I've been looking for just yesterday in the Health Insurance Underwriters Association and will be speaking to two of the regional groups. I am participating in Health Fairs at companies in the region and will be doing Lunch & Learns at some of them. My new book, Dear Doctor, Dear Patient, What every doctor and patient wishes the other knew, but never says or asks, is coming out soon.

Ilene Corina: Our work at PULSE of NY has been overwhelmingly successful. We have had advocacy trainings and patient safety seminars, and our events are filled to capacity by community members. We are receiving a grant from Cautious Patient Foundation which will help us grow our Patient Safety Advisory Council and reach even more community. Our visits to hospitals have grown and are advocating for entire families at the bedside.

Dave deBronkart: Two things: A TEDx talk in Holland, and I participated in a debate in Costco Connection magazine about whether patients should look for medical information online.

Jeni Dingman: Took responsibility for informing the Facebook group via more than 100 posts about specific news stories, events, and opportunities to get involved. I've been assisting in efforts to retain Dr. Don Berwick as the head of CMS. PULSE of Colorado and the Pulse of America Coalition for Healthcare Reform both signed on with the Partnership for Patients.

Ken Farbstein: My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, was published in April by Dorland Health's new Professional Patient Advocate Institute. The book uses stories of celebrities, public figures, doctors as patients, and my family to show how to advocate for ill people while partnering with their doctors and nurses. My individual patient advocacy practice, Patient AdvoCare, has been growing.

Carl Flatley: The Sepsis Alliance continues are international awareness campaign, since only 3 out of 10 Americans has heard the word, "sepsis". One of our latest projects is the release and distribution of our Sepsis Emergency video. On July 26, segments of it will air on Rachel Ray along with 3 members of the Sepsis Alliance.

Doug Hall: 1. Completed the design for the PULSE of Florida Patient Safey Services

a. Patient Navigation Services - to find the right physician and facility and care coordination

b. Patient Education Services - basic to comprehensive - one-to-one or one-to-many

c. The Attentive Care Unit - Inpatient Safety Monitoring for safety, comfort and communication

d. Enhanced Post-Discharge Case Management - Better follow-up, fewer re-admissions and better care coordination

e. Adverse Event Disclosure Services for Patients and Disclosure School fr Providers;

2. A Faculty Member for Patient Advocate Webinars by The Professional Patient Advocate Institute PPAI;

3. Created the PULSE Patient Safety Collaborative to encourage sharing of knowledge to help advance grassroots Patient Advocacy; and

4. Expanded the PULSE online Patient Safety Bookstore - now with 2200 books and products.

Carole Hemmelgarn: Completed Master's Degree in Leadership in Patient Safety from University of Illinois Chicago. The past three months I have given 6 talks in various areas of Patient Safety, mostly focusing on the importance of communication and listing to patients, parents, family members, and other assigned advocates.

John James: I've participated in my first meeting of the State of Texas Healthcare Acquired Infection and Patient Adverse Event Panel meeting in Austin. I think this group can make a real difference in patient safety in Texas and could actually give leadership to other states hoping to improve patient safety. I've written six monthly Patient Safety America Newsletters.

Kevin Kavanagh: My most recent publication is "Health care integration: Will physicians lose their voice?" in the Bulletin of the American College of Surgeons. At least two other articles will be published in the medical literature later this year. With 19 others, I submitted a comment on physician's fiduciary responsibility, patient representation, etc., to guide CMS' rule-making on Accountable Care Organizations.

Charles Maclean: I crafted and submitted proposed legislative language on "patient advocacy, wellness, self-responsibility and prevention" to the Oregon Health Care Transformation Task Force. Some of these focus points are being discussed now as part of Oregon health care pending legislation. I conducted the action research resulting in the thought-action stimulus: Patient Advocacy - A Conversation Starter for Health & Health Care Transformation ("From Provider-Centric Fee-for-Service Sickness Care to Patient-Centric Wellness Outcomes Partnership Care Supported By Patient Advocacy as a Shared Right and Responsibility. Includes definitions, self-advocacy, self-education, framing questions, desired outcomes, benefits for health care providers, guiding principles, resources and Appreciative Inquiry action stimulus questions.

Mary Ellen Mannix: The James Matthew Mannix Bill (Pennsylvania) requiring screening for congenital heart defects in all newborns born in birthing facilities and hospitals will be introduced to the Pennsylvania legislature any day now. Senator Daylin Leach (D) is the bill's sponsor! My second book - a guideline to restorative practices/justice in medicine is in the works. I have also held numerous Rattle Wraps, am writing more curriculum for patients & clinicians in the childbirth & maternal health fields, and overall enjoying daily advocacy for moms and their babies through James's Project (and a collaborative presence with The Empowered Patient Coalition).

Karl Maurer: I took back information about IHI to the 15+ members of the Family Advisory Board at Children's Memorial, along with patient safety information. We're going to dedicate at least one meeting a year to patient safety and service excellence in the hospital, and in all our meetings, focus on quality and control. Last night, we the CMH FAB met with the infection control department and reviewed the progress we have made on in-hospital infections - down by 65% since 2005 - and hand washing by staff -95%+, up from 85% in 2005.

Evelyn McKnight: HONOReform Foundation and the Safe Injection Practices Coalition, which includes the CDC, the CDC Foundation and a variety of public and private partners, continues to help lead the One and Only Campaign. HONOReform is building a chapter in Nevada, where it will expand its mission to focus on factors in addition to reuse of needles and syringes that have contributed to the 45+ documented outbreaks in the U.S. over the last 12 years.

Armando Nahum: At the Safe Care Campaign: we are producing a 5 minute video for Patients and/or loved ones in the ICU. "What to expect and how to behave in the ICU environment" will not only educate the public but it will make the caregiver's job a lot easier. The CDC is working with us as consultants with Arjun Srinivasan, MD (Associate Director for Healthcare Associated Infection Prevention Programs, Division of Healthcare Quality Promotion, NCEZID) as the spokesperson.

Dianne Parker: I have testified regularly before our SC Senate Sub-committee on the necessity of removing the Tort Reform coverage for physicians. My story has often been shared with our legislators at their county meetings all over the state. I've been to several states besides my own, spoken to groups of older citizens on Patients Rights - also visited a couple of hospital CEO's with three patients in SC, and some in other states, regarding patient complaints of unsatisfactory care in the ICU for a blind patient, and one who had multiple medical errors.

Mary Ann Peugeot: I participated on the External Review Committee for Picker Institute for grants to be awarded under their Always Events(r) (AE) Initiative. I am continuing as Chair of Vanderbilt's Patient and Family Advisory Council and have also been named to Vanderbilt's Patient Experience Improvement Council where I have been very active. Because of my involvement in projects and activities related to Patient and Family Care at Vanderbilt, I was nominated for a community service award.

Tricia Pil: I continue to blog about patient safety for Lamaze International and posted a piece about the HCAHPS patient satisfaction survey several months ago. I have a letter-to-the-editor at the American Journal of Obstetrics & Gynecology forthcoming (no pub date yet) that provides a critical analysis of an obstetrics patient safety program at a major medical center; this publication is co-authored with fellow IHI PA and healthcare law attorney Kathleen Clark and professional root cause analyst Robert Latino. I completed a class last spring on Lean Six Sigma quality improvement and am working toward official green belt certification. I gave two talks locally on patient safety and medical error in March--one to social workers in health care (Society for Social Work Leadership in Health Care) and the other to quality improvement nurses through the American Society for Quality. I continue to serve on the board of the Pittsburgh Consumer Health Coalition and am delighted to have spearheaded the drive to bring fellow IHI PA Dale Micalizzi to Pittsburgh in August.

Patty Skolnik: Citizens for Patient Safety continues to do presentations nationally regarding The Faces Of Medical Error....From Tears to Transparency: The Story of Michael Skolnik. My husband David has joined me on the road and in the presentations for Q and A. We have also agreed with University of Colorado Hospital to not only do external consumer training but internal staff training for all medical personnel.

Trisha Torrey: Kept nurturing the Every Patient's Advocate network, writing biweekly Thursday emailings of Headlines and Tools for advocates, and organizing webinars. Continued to write and speak on patient empowerment topics, reaching out to patients, advocates, navigators through About.com and Every Patient's Advocate. Was invited for the first time to address providers, both through a series of articles in Physician's Practice Magazine and speaking to two groups of providers through the Alaska Federal Health Care Partnership.

Permanent, pervasive and beyond their control: Non-use of hospital checklists

2011-06-06T08:20:00.002-05:00

David Maxfield, Linda Groah, and their research team at VitalSmarts and the Association of periOperative Registered Nurses (AORN) surveyed 2,383 registered nurses about communication breakdowns. For each breakdown, the nurses said whether it had been part of a continuing ["permanent"] pattern, was widespread ["pervasive"], or was within the nurse's control. Here are two of the 50 or so "triple-negative" [permanent, pervasive, and beyond their control] incidents the researchers collected:

"A special graft was ordered and due to arrive at 10:00. The surgeon insisted the day before he had to have this particular graft. The day of surgery the graft was not yet physically in the building but the surgeon insisted we put the patient to sleep. My stand was that unless you were prepared to use something else we should wait until it arrived. All of our checklists and protocols require that all implants and necessary items are available before the case begins. The surgeon said he would [get the graft] if necessary. I felt we were jeopardizing patient care, setting a poor example to the staff and why do we go through all these things in the first place?"

"Inserting central line at bedside in ICU. Used checklist but surgeon refused maximal sterile barrier and in fact, ridiculed me and hospital staff for instituting (this precaution) when there is no 'proof' it works. Hospital does not allow RN to stop procedure so it was inserted without maximal sterile barrier."

Unfortunately, there are times when well-intentioned staff can't speak truth to power.

Advice: A professional patient advocate can help in these situations.

Read about finding and working with a professional patient advocate in Chapter 12 of Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

A true community: At the 30th anniversary of the AIDS epidemic

2011-06-05T21:07:00.001-05:00

Today is the 30th anniversary of the announcement of the first deaths from what was later termed AIDS. On June 5, 1981, the Centers for Disease Control published the first report on the epidemic in its Morbidity and Mortality Weekly Report. Now, 30 years later, AIDS is a chronic disease that people live with for decades, with a variety of medicines and lifestyle changes.

Randy Shilts traced the early years of the epidemic in And the Band Played On, an encyclopedic account of the players and the politics. By the four-year mark, he said, the San Francisco gay community had mobilized to fight the epidemic. Numerous AIDS-related organizations had persuaded thousands of local gay men to staff information hot-lines, raise funds for AIDS services, and volunteer to help the stricken. Gays had continued to gain in political strength. At awful cost, they had forged a true community, with a shared sense that they wanted that dream to survive.

Gays' initial efforts to organize had some missteps. For example, Gay Men's Health Crisis had continual internal battles over whether to clearly state how gay men’s sexual practices contributed to the spread of AIDS. There had been great debate over whether their first mass mailing should show the word "gay" in the return address of the organization, in the spring of 1982. Their first newsletter in July 1982, the first nonscientific publication about the epidemic, presented different views on risk reduction.

But they kept at it, and they grew. By August, GMHC had 300 volunteers to provide buddies offering practical services to AIDS victims. By the end of October, they had gotten a meeting with New York City Mayor Ed Koch's liaison to the gay community, marking the first official attention to the epidemic by the city government. By the end of 1983, GMHC had coordinated $3 million worth of volunteer time, and was providing clinical services to about 50 people a week. It was then the only AIDS education program in New York City.

Still, its progress was fitful, and painfully slow. It remained very difficult to get the attention of government officials, until Rock Hudson, a popular actor, died of AIDS. Yet eventually, AIDS activists spurred the more rapid testing of drugs and the expenditure of substantial government research funding. These contributed to the development of AZT and the cocktail of AIDS drugs that were found capable of holding the disease at bay.

Advice to patient safety advocates and activists: Let's learn from the success and setbacks of AIDS activists, and celebrate their success.

Read Chapter 7 of my book, about the ways some patient advocates heroes are building our movement.

The Big Short and Inappropriate Eye Surgery

2011-06-04T05:48:00.006-05:00

In The Big Short: Inside the Doomsday Machine, Michael Lewis insightfully dissected the reasons for our financial meltdown. He pinpointed the role of perverse incentives, illustrating his point with a healthcare story:

"Warren Buffett had an acerbic partner, Charlie Munger....If you wanted to predict how people would behave, Munger said, you only had to look at their incentives....Dr. Mike Burry agreed. [He believed] even in life or death situations, doctors, nurses, and patients all responded to bad incentives. In hospitals in which the reimbursement rates for appendectomies ran higher, for instance, the surgeons removed more appendixes. The evolution of eye surgery was another great example. In the 1990s, the ophthalmologists were building careers on performing cataract procedures. They take half an hour or less, and yet Medicare would reimburse them $1,700 a pop. In the late 1990s, Medicare slashed reimbursement levels to around $450 per procedure, and the incomes of the surgically minded ophthalmologists fell. Across America, ophthalmologists rediscovered an obscure and risky procedure called radial keratotomy, and there was a boom in surgery to correct small impairments of vision. The inadequately studied procedure was marketed as a cure for the suffering of contact lens wearers. 'In reality,' says Burry, 'the incentive was to maintain their high, often one-to-two-million-dollar incomes, and the justification followed. The industry rushed to come up with something less dangerous than radial keratotomy, and Lasik was eventually born.'"

Read a story in Chapter 7 in my book, about my own decision on elective surgery.

After everyone had left: Choosing an Emergency Room

2011-05-26T10:58:00.005-05:00

The day after my daughter's Bat Mitzvah in Boston, after everyone had left, my mother asked me if I'd bring her to the Emergency Room. She'd been having pain radiate down her neck. She'd waited until then to ask because she didn't want to ruin my daughter's special day. I wanted the best care for her, and wanted her to get it quickly. She wanted to catch a train to NYC to see an old friend. I called 2 E.R.s to find out how long she'd have to wait. The shorter wait was at a very small community hospital in our suburban home town. I asked the E.R. for their FAX number, and in the car on the way, I called my mother's doctor's office in Atlanta and asked them to FAX her problem list and medication list to the E.R. in Boston.

When we got to the E.R., the problem list and medication list were already there, and they quickly got her in to see a doctor. They gave her an EKG, X-rays, and blood tests to rule out a stroke. And they arranged a specialist at a nearby Harvard teaching hospital to see her on a TV screen - a quick telemedicine consult.

They ruled out a stroke, gave her some quick education about the problem they'd discovered, so she WAS able to catch her train in time. The lessons?: Get an advocate who can put you first. Choose your E.R. Get them the critical information they need.

The stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, come from my personal experiences in my family, my professional work as a hospital consultant, and research for my blog. There are stories of famous doctors who've been patients, and what we can learn from them. There are stories about the health crises of celebrities and public figures, and what we can learn from them.

I've been working for 15 years as a consultant in helping hospitals prevent medical errors, and improve the quality of care. When my father-in-law died from a medical error in 2002, it changed me. I later began writing stories to educate and empower and warn people in Patient Safety Blog. So my interest was first professional, then very painfully personal, and then professional in a different direction, as a patient advocate.

Now my work enables people to partner with their doctors, to get the best patient-centered care.

The doctor is in your home: A medical clinic in public housing

2011-05-23T21:39:00.002-05:00

Thomas Rhoe and his neighbors used to get an ambulance trip to the Emergency Room for common urgent medical problems, even for colds. Now he'll be able to take the elevator downstairs to an in-house clinic for treatment when needed.

Dr. Jeffrey Brenner of the Institute for Urban Health at Cooper Hospital in Camden, New Jersey had looked at the reasons why so many of Northgate II's residents used Emergency Rooms and hospital care so much, costing $12 million dollars over the last six years. He learned that few of the senior and disabled residents had access to primary care. He founded the Camden Coalition of Healthcare Providers, which worked with Camden Churches Organized for People, whose interviews of 50 tenants revealed the residents' access and transportation problems. Their work resulted in a partnership with Reliance Medical Group, which plans to open the medical office in June. The office will have three exam rooms, and will be staffed by a nurse practitioner or doctor. Spanish-speaking staff will be available.

Read about other innovative healthcare practices in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Claudia Vargas of the Philadelphia Inquirer and the CCOP News, the sources of this story.

Four people in my family: Testimony on payment reform legislation

2011-05-17T15:22:00.006-05:00

Testimony at the Massachusetts Statehouse, May 16, 2011
I'm Ken Farbstein, past President of Health Care for All's Consumer Health Quality Council. Thank you for the opportunity to tell you about four people in my family, in stories that are in my new book.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, they'll make better informed choices, and sometimes they'll decide against surgery – which could save money for the whole system.

And near the end of life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. That was better for him, and for us, and it must have actually saved money for the taxpayers too.

My very active Aunt Anne had always lived alone, in Denver, far away from the rest of our family. So she didn't have the family support that helps keep people healthy. She didn't like doctors much, but sometimes she'd see a doctor, just to get a prescription. Perhaps if her primary care provider had had a patient educator on a medical home team, they could have worked out some kind of agreement with her about regularly taking her medication. If so, it[s possible she could still be alive. She died from a complication of untreated diabetes.

My uncle Leon in Florida had a Type A personality. He loved to eat. I doubt he got much exercise. Over the years he developed heart disease, and after he retired to Florida, had multiple stents inserted by the hospitals there. If the system had paid his healthcare providers to keep him healthy, that could have moderated or prevented the coronary artery disease and his fatal heart attack.

So in my family, patient empowerment would have helped. Transparency would have helped. A public health focus on prevention would have helped.

I think many people have the same experiences as my family has had, but I think they happen so often that most people don't even notice them. There are so many people - maybe some in your family? -with diabetes, high blood pressure, asthma, or a substance abuse disorder, or a person who smokes, or drinks more than they should, or weighs more than they should, or doesn't exercise enough. Shouldn't the payment rules encourage providers to keep your family healthy?

The payment rules create a very subtle current that carries us in the wrong direction, so that providers and consultants who want to improve prevention have to make their way against the current, so they can't make much headway. Please fix the rules.

After his rocky rehabilitation: Baseball star Kendrys' Morales surgery decision

2011-05-12T06:40:00.000-05:00

Los Angeles Angels first baseman and superstar Kendrys Morales was just way too happy, and you would be too. Leading the team last season with 11 homers as of May 29, he had just hit a game-ending grand slam home run, and basked in the cheers of the crowd as he jogged around the bases. At the end he joyfully took a huge leap, landing on home plate. And wrecking his left ankle, his livelihood for more than a year, and maybe his team's chances for a future pennant.

The fracture healed fully, but degenerative cysts and scar tissue developed. "Kendrys has worked as hard as anybody in coming back from a serious injury, and it hasn't worked," said the team's medical director, Lewis Yocum.

"I wasn't ready to have surgery again, but this is the best path for the team and myself," the slugger said, in explaining the decision to undergo surgery again. He and the team's General Manager, Tony Reagins, announced the decision after the team gave up on his rocky rehabilitation.

The medical director said recovery from the surgery should take at least six months, but could change depending on the nature of the procedure, which has not yet been scheduled.

Morales had a team of advisors that included the medical director and General Manager, among others, who helped him make the treatment decision. He and they took the decision seriously, giving it much thought. First he chose a non-surgical route of rehabilitation, i.e., physical therapy and exercises, and tried his best to make that work. He was aware that the decision affected more than himself alone.

Advice to people who've suffered a severe injury: Like Morales, think carefully beforehand about surgery with a team of advisors, considering the effects on those around you. Work hard at self-care if that’s an option.

Read more about the surgery decision in Chapter 3 of my book, which you can get at Amazon. Thanks to the Associated Press for the source story, as in today's online version of USA Today.

They claimed the NHS would have killed me off: Stephen Hawking on universal health care

2011-05-11T20:48:00.000-05:00

Stephen Hawking, the eminent physicist and 40-year survivor of Lou Gehrig's Disease:
A statement in the United States press in summer 2009 claimed the National Health Service in Great Britain would have killed me off, were I a British citizen. I felt compelled to make a statement to explain the error. I am British, I live in Cambridge, England, and the National Health Service has taken great care of me for over 40 years. I have received excellent medical attention in Britain, and I felt it was important to set the record straight. I believe in universal health care. And I am not afraid to say so.

See Chapter 9 on living with chronic illness, in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Claudia Dreifus for the source interview in Tuesday's New York Times.

Patient Activists: Swimming Uphill

2011-05-04T15:37:00.004-05:00

Three of the best things about Boston occur within a three-week period every springtime: the Boston Marathon, the Walk for Hunger, and the herring run in Weymouth. In each, tens of thousands come together for a single crazily ambitious purpose. Whether they're running 26.2 miles, walking 20 miles for a charitable cause, or swimming 78 feet uphill through fish ladders to spawn, their raw effort and grit are hugely inspirational.

I watched the Boston Marathon again this year, from a vantage point near the top of Heartbreak Hill. The Kenyans and the ordinary shlubs, the blind runners, the wheelchair racers, the runners with artificial legs. I didn't see Dick Hoyt, the 70-year-old father who runs behind his wheelchair-bound adult son Rick, though I read that they, too, finished their 29th Boston Marathon. (Fourteen years ago, when I ran the marathon, my seven-year-old son, seeing me at Mile 24, almost four hours into the race, said, "Daddy's gonna win." Right.)

Of the three, the herring provide the most apt metaphor for patient activists. We're all small fry. The odds seem daunting. But we swim uphill relentlessly: it's what we do. We gotta spawn more of ourselves; that's what we live for.

The game warden told me that once a day or so, when the density of herring becomes crowded enough, they suddenly surge forward en masse over the next ladder. We activists need to keep growing a critical mass, for the same purpose. So, tell your lagging friends to jump in; the water's fine!

For inspirational human stories of patient activist heroes, see Chapter 12 of my book, Getting Your Best Health Care: Real World Stories for Patient Empowerment.

Dousing the fire: Resolving the many causes of high weight gain

2011-04-21T14:08:00.005-05:00

Dr. David Edelson describes one of his best patients:

She had a whole series of issues: sleep apnea [blockage of the airway, cutting off breathing for 20 seconds or more], hypothyroidism [a slowing of bodily processes due to an underactive thyroid gland], insulin resistance [misuse of the insulin produced in the body], binge and impulse eating. She wasn't exercising and was slightly depressed; she had a whole spectrum of different issues.

One by one, we worked through them, both with lifestyle changes and others. In our practice we have a gym with a personal trainer, so she'd work out with him/her two days a week. We have a nutritionist, who put her on a low-carbohydrate, higher omega (heart-healthy) fat diet. She'd been a terrible carb addict, and was pre-diabetic, with metabolic syndrome. For her, eating our Western high-starch, high-fat diet is like throwing gasoline on a roaring fire.

By getting her to eliminate all these white starches, and eat more whole grains, healthier grains, fish, avocadoes, olives, etc., that almost instantly turns off the metabolic syndrome, instantly dousing the fire. It got her metabolism back on line, and her carb cravings under control. The exercise and diet got her to burn her mesenteric (belly) fat. That began the process of getting those issues under control.

Then we added other things: nutritional products to fight the insulin resistance like high doses of fish oil, an herbal product with chromium, and cinnamon, a good insulin sensitizer.

Initially, we started with some medications to tip the energy balance to the right direction. We put her on a combination therapy of low-dose Phentermine and Topamax (that combination is now in development as a single drug called Qnexa). We use that in people with very strong eating urges, and binge-eaters, to help control their eating impulses and reduce their appetite. We also put her on Metformin, which is for people with diabetes and metabolic syndrome, a pre-diabetic condition which she had. That brought the insulin resistance under control.

With the exercise, the diet, the supplements, and stress management, she turned her life around, and adopted better behaviors. We have a Reiki master who does a lot of natural stress reduction, who did weekly sessions with her for a while. That's a cross between hypnosis and energy healing, so people can learn to manage their stress and bring stress out of the body, liberating the internalized stress.

She had sleep apnea, and was a terrible sleeper. She'd stop breathing 50 or 60 times an hour! Her oxygen was in the low 70s; it should be 98%. It was like standing on Mt. Everest without oxygen. That put a huge strain on her body. It even causes weight gain, because it affects a lot of hormones like ghrelin, leptin, and growth hormone secretion; they all get adversely affected.

By treating her sleep apnea with a CPAP machine [providing continuous positive airway pressure], she got normal sleep patterns, which turned her metabolism back on, and gave her more energy during the day. It's classic, like with a car with a lot of different parts that are failing, so you change the filters, tighten the belts, and align everything so it can run properly again.

Now, we can reduce her medications. She has lost 65 pounds, and is close to her ideal weight, with the lifestyle changes fully in place to maintain her weight where it is. She has been exercising to build lean muscle tissue, which has raised her basal metabolism. Now she's burning calories 24 hours a day, so we can wean her off the medications.

My complaint about the diet industry is this: They tell people they can do something on a short-term basis and lose weight permanently. There's a lot of magical thinking going on, since without changing behavior, lifestyle, or identifying the underlying medical causes of weight gain, 98% of dieters regain the weight within two years. A crash diet or drug or supplement is not going to create long-term weight loss. It will get short-term effects, but then the person will regain the weight, and then some. This is the basis of yo-yo dieting.

It's like stretching a rubber band: you can pull on it temporarily, but when you release it, it'll snap back. That's the set point theory: our bodies become set at a certain weight level. The only way to get long-term results is to relocate the set point. As you stretch the rubber band, you take what it's attached to and move it to a new position. This can only be accomplished by finding out why each individual gained the weight in the first place. Then you can address the specific causes, such as lost lean muscle mass, insulin resistance, sleep disorder, depression, injuries, hormonal imbalances…whatever has moved the set point to this new higher position.

So no one practitioner can effect long-term success with weight loss. At HealthBridge, we have an entire team, including medical doctors, sleep disorders experts, a nutritionist, personal trainers, a physical therapist, chiropractor and acupuncturist, a hypnotist and Reiki master, each experts in addressing a specific underlying problem that can arise in weight gain. If someone has a hip problem, or a back problem, they can't exercise, and start gaining weight. Here our physical medicine team would be called in to fix the problem and get them back to the gym for fitness training. I like to call this a plug and play model, with all these components at the same facility. We look at every puzzle piece: fitness, genetics, hormones, sleep – the whole list, and see which pieces are out of alignment, and need to be fixed. We use the individual practitioners, and put the whole puzzle back together.

Dr. Edelson's practice is in Great Neck on Long Island in New York as of May 2011.

Read Aquameliza's weight loss story in Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, or get it at Amazon.

Two Resources for Patient Advocates

2011-04-20T10:02:00.002-05:00

My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, advises professional and family advocates how to keep their loved ones safe during health crises. Thanks to the advocates and activists who contributed stories, many of which appear in Chapter 12, on finding and working with professional patient advocates.

Second, Dorland Health’s new Professional Patient Advocate Institute offers webinars, newsletters, special reports, a directory, and certification for advocates. Membership has its privileges: notably, two free copies of my book, too. The book is also available a la carte from PPAI at a discount, and on Amazon.

An attack on my liver: FDA's MedWatch adverse drug reports on Xenical

2011-04-16T15:20:00.007-05:00

Dr. Sidney Wolfe of Public Citizen warned against the use of Xenical and Alli (weight-loss drugs in the orlistat class), after reviewing the reports of adverse reactions to them according to the U.S. government's FDA MedWatch reports. Here's the experience of one customer:

Monique Paulwell of Bowie, Maryland said she only took Alli four times before she began feeling fatigue, loss of appetite, a nagging headache and jaundice. "After a battery of tests, [doctors] said there had been an attack on my liver. By the time I was admitted to the hospital, I had 48 hours to live. It was that serious."

She said she thought taking Alli would help her lose a few pounds and maybe boost her acting career. Instead, she had a near-fatal experience her doctors told her was caused by the drug. She said she needed a liver transplant to save her life.

Public Citizen found that severe side effects affected dozens of patients who'd taken the drug, and that the drug's benefits, in any event, were minor, amounting to 4 - 5 pounds of weight loss. That has to be weighed against the 20% chance of side effects, some of which are severe, e.g., liver disease, pancreatitis, and kidney stones. The FDA received 47 reports of acute pancreatitis and 73 cases of kidney stones attributed to orlistats.

As with any drug, one should weigh the likely benefits in light of the possible harm. The advice of a pharmacist can be helpful in this context. A drug like Xenical works by blocking absorption of about a third of the fat enzymes that enter the body. Instead, the fat passes through the body to the gastrointestinal tract until it is excreted. These medications also block fat-soluble vitamins including vitamins A, B, and K.

Advice: For me, it's much easier to give advice like "maintain a healthy weight" than it is to follow my own advice. Yet it is important, especially because the surgical alternative for weight loss has some serious trade-offs, as discussed in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Lara Salahi of ABC News for some of the background information here from their story on April 14.

Michael Jackson, Tom Brady, and Boris Yeltsin: Getting Your Best Health Care

2011-04-15T19:56:00.005-05:00

What do Michael Jackson, Tom Brady, Boris Yeltsin, and Anna Nicole Smith have in common?

They all had health crises with important lessons for protecting your clients’ health, and your family’s health, as told in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

How does this book benefit the reader?

The lessons from the dozens of stories of celebrities and others are easy to read and absorb in advance of any health crisis. If the reader is in a health crisis, she can refer to the summary suggestions at the end of each chapter, and the chapter on using a professional advocate, for immediate guidance.

The book also draws lessons by telling the healthcare stories of Dr. Don Berwick, actress Farrah Fawcett, former Pres. George W. Bush, comedian Art Buchwald, Dr. Jerome Groopman, Dr. Peter Pronovost, newsman Ed Bradley, former Rep. Geraldine Ferraro, and many others.

Many doctors and nurses consider themselves patient advocates. What should they do?

My book describes how they can be maximally patient-centered. They can redesign everything from their academic approaches to their wallpaper, and everything from patient orientation and scheduling to end of life discussions.

In 50 words or less, how would you describe your book?

This book teaches patient advocates, both professionals and family members, to partner with their doctors and nurses, through brief stories, each with a lesson. Most chapters feature at least one story about a famous doctor or celebrity.

Who is your intended audience?

Two groups: Professional advocates, and women over 40. The professional audience will consist mostly of patient advocates, geriatric and other case managers, social workers, nurses, doctors, etc. Secondly, women usually serve as the guardians of their family’s health, so they’re the most likely readers. Women who are sandwiched, pressed between the needs of their elderly parents and their children, are the primary audience. Men who take responsibility for their own health, and that of their family, should also read the book.

What does “patient advocacy” mean in today’s healthcare world?

At different times in their work with an ill person, the advocate plays the roles of a teacher, midwife, knight, confidante, and political activist. To me, an advocate is ultimately a champion who helps a single patient get safely through a health crisis.

Why is there an urgent need for a book about patient advocacy right now?

There are three reasons occurring within the last month or so. First is the greater awareness of just how widespread medical errors are. In early April, David Classen, Roger Resar and their team reported in Health Affairs that one-third of hospital patients experience an adverse event. That awareness creates great fear among patients. Knowledge about how patient advocates can keep people safe in hospitals will dispel that fear. Second is the growing appeal of medical procedures that are surprisingly risky, ranging from cosmetic surgery to new ways to use powerful radiation to treat cancer. Third is the broad push by both political parties’ leaders to reduce healthcare costs. President Obama and Rep. Paul Ryan both announced game-changing initiatives in early April. It’s likely this will ultimately impel hard-working clinicians to work even faster, putting patients at risk.

What kind of information can readers expect to glean from the book?

The book is brimming with dozens, if not hundreds, of specific tips, each one presented as the moral of a true story about a celebrity, political figure, family member, or patient advocate. There’s everything from how to find the best Emergency Room, to suggestions for those living with chronic illness, everything from lessons learned in childbirth to how to pass on your wisdom to your heirs.

In the end, what do you hope to achieve through this book?

I have two hopes and dreams. I want to create the new patient, who becomes a partner with doctors and nurses in his own treatment. I want to guide the emerging professional patient advocates.

Where can readers find your book?

Bound books and e-books are available at a discounted price at Dorland Health's Professional Patient Advocate Institute. It’s also available online at Amazon.

Any parting words of advice for patient advocates?

They can rise to the challenge, as did the inspirational heroes in Chapter 12.

May yield substantial benefits: The fifth birthday of the Massachusetts universal health insurance law

2011-04-14T19:00:00.007-05:00

In 1993, John Ayanian and a team of researchers studied the detection and treatment of breast cancer among women in New Jersey with and without health insurance. In their widely cited article in the New England Journal of Medicine about the harm to women's health of the lack of insurance, they concluded, "Comprehensive programs to improve access to early detection and optimal treatment may yield substantial benefits." Little did they know.

Fast forward to 2011, and the recent fifth birthday of the passage in Massachusetts of a state law requiring near-universal health insurance, Chapter 58 of the Acts of 2006. By my calculations, the new coverage for many thousands of women has likely led to the earlier detection and treatment of breast cancer, saving the lives of dozens of women each year, and more than 200 since the law went into effect. It would be interesting to see more precise calculations. Perhaps this could be an exercise for public health students.

Happy Birthday, and many more!

Read about the first birthday of the Massachusetts health reform law.

Grateful every day vs. prolonging my dying: Two views of kidney dialysis

2011-04-11T07:29:00.007-05:00

Ruth Silverman's letter:
My husband, a retired neonatologist involved in ethical issues in medicine, suffered acute renal failure at 87. He was hospitalized briefly and underwent several dialysis treatments during this time.

His urologists (three of them) told him that they were arranging dialysis for him three times a week upon discharge from the hospital. He confronted them with these words:

"I am 87 years old. It is a waste of the resources of this nation to provide me with dialysis three times a week. You will not be prolonging my life. You will be prolonging my dying. That is not the quality of life I choose."

My husband had executed an advance medical directive several years earlier in which renal dialysis had been specifically excluded, so this was not a hasty decision. He returned to our home and his own bed.

Our three adult children joined us, and my husband received wonderful, competent and tender care, made possible by our local hospice. He assured us that he had no regrets about his decision and died peacefully and pain-free two weeks later.

Philip Stopol's letter:
As an 87-year old undergoing my fifth year of dialysis, I am grateful every day for the opportunity to benefit from the results of this treatment. My goal has always been to lead a satisfying and productive life.

For 23 years, I have been enrolled in the Hofstra University PEIR group (Professionals and Executives in Retirement), in which I both attend and teach classes.

Weather permitting, I occasionally play either 9 or 18 holes of golf.

I frequently drive to Manhattan to enjoy a museum or Broadway show.

I refuse to accept dialysis treatment as a death sentence because I have proved that it is not.

Read a story about informed medical decision-making. Thanks to the New York Times editor, who published these letters in today's issue.

They're horrified: Deaf parents and appropriate cochlear implant surgery

2011-04-10T09:47:00.007-05:00

Prof. Harlan Lane's take on disability, tolerance, and appropriate surgery for the deaf:

Question by Margot Sanger-Katz: Nine out of ten deaf people marry other deaf people. Why?

Answer by Prof. Harlan Lane: That's very significant. People who are blind as a rule do not want to marry other blind people. It's a positive value being deaf. When a culturally deaf woman is pregnant, she is hoping, "I'll love this child; it will be my child. But if it was deaf that would be really nice." That's one bit of evidence that deaf people don't view themselves as disabled.

Q: Does that mean they tend to oppose medical interventions for their deaf children, like cochlear implants?

A: Yes. There have been some surveys. And I've spoken with deaf adults, both those who have deaf children and those who don't. And they're horrified. To give an analogy, if we told pygmies we can make life a little easier for your kid if we administer this growth hormone to them, so they'll be taller, they would mostly be offended. Likewise with black Americans, if we told them we can make life a little easier for your kid because with a little plastic surgery and some skin lightening, which we can do now, they're going to "pass" more easily, I might get punched, and justifiably so.

If you're talking about the deaf as an "ethnic group," and what you're offering them is to try to change them to make them more like the majority, because life is easier for the majority, that's unethical.

It all turns on the definition of disability. The surgeons, especially, can only see disability. And, of course, if you can mitigate a disability, that's a good thing. But I, and deaf people, and others who know the deaf well, see that there's no disability here. There's a physical difference, which many minorities have.

We should allow the deaf to make their own decisions about surgery even if they decide differently than we would.

Read a story about href="http://www.PatientSafetyBlog.com/2010/05/when-you-buy-car-inappropriate-surgery.html">saying No to surgery. Thanks to Margot Sanger-Katz, whose interview appeared in today's Boston Globe.

Still living her memoirs: Elizabeth Taylor, Saying No

2011-03-26T14:59:00.000-05:00

Elizabeth Taylor lived large, in the moment. Late in life, after a variety of health problems, she chose not to undergo a back operation, saying she had already had a half-dozen and wasn't up to another one.

When she received yet another offer, late in life, to write her memoirs, she refused, saying, "Hell no, I'm still living my memoirs."

Advice: Live your life your way, and make your decisions accordingly.

Read about another person who said No to back surgery. Thanks to Mel Gussow for his source article in the New York Times of March 24.

Her husband wasn't ready: Discussions about the end of life

2011-03-17T10:11:00.003-05:00

Dr. Jeffrey Schnipper's story:

I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.

Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

I don't regret it: A kidney donor's pre-existing condition

2011-03-14T21:15:00.002-05:00

Marci McKim's story:

I gave my husband a kidney in 2000 in the vain hope of keeping him alive until a match could be found (long story short). He never got the second kidney and died in 2002. I lost my corporate job in 2007 and have been unable to afford health insurance since then.

I don't regret the extra months of life I gave my dear husband; it was my pleasure to do so. But when I see articles about the lifesaving procedure today, I wonder why anyone would do it. Medicare covers the recipient, but the donors are left to the tender mercies of the health insurance industry, which considers us pariahs because we have a re-existing condition. If a live donor loses health insurance, there's no recourse.

Read a very different kidney donor story. Thanks to Marci for her letter to the editor of the New York Times on March 13, reprinted here.

A smoke-making machine: My Don Berwick & his CMS Nomination

2011-03-05T07:24:00.003-05:00

Twenty years ago, when my son was a toddler, my wife and I brought him with us to the National Forum of the Institute for Healthcare Improvement (IHI). He had a cold at the time, but was otherwise fine. As we checked into our hotel room, we saw Dr. Don Berwick, who was entering his own room next door. He said we could call him, even in the middle of the night, if needed, to come and take a look at our son. The gesture was doubly generous because no doctor can cure a cold; the visit would be for the purpose of reassuring us young parents. My son slept peacefully, so we didn't need to take up the offer of this internationally known pediatrician to make an unpaid house call.

Senators Orrin Hatch, Mike Enzi and 40 other Republican U.S. senators sent a letter to President Obama on March 3, asking the president to withdraw the nomination of Dr. Don Berwick as head of the Center for Medicare and Medicaid Services (CMS).

The letter cites four reasons. One is Don’s "lack of experience managing an organization as large and complex as CMS." CMS is the largest organization in the world, so only people who have already led CMS could have that prior experience.

The letter criticizes the President's nomination as "abrupt and unilateral." The Republican legislators' recent habit, of refusing to even formally debate many congressional matters via the filibuster, makes "unilateral" an example of the pot calling the kettle black.

Third, the letter cites Don's past record of "controversial statements." The most loudly voiced (though utterly ungrounded) Republican concern has been to "death panels." Don's father, himself a doctor, died in a nursing home. Don has long pushed hard to make treatment at the end of life – which some call "death by intensive care" – far more humane, via his leadership of the nonprofit Institute for Healthcare Improvement. Don has certainly made controversial statements over his long career in the midst of efforts to greatly change our healthcare system.

The final stated reason in the letter is Don's "lack of experience in the areas of health plan operations and insurance regulation." Before founding IHI, Don led a unit in a large pioneering health maintenance organization (HMO) that was really about health maintenance: Harvard Community Health Plan. (I'm proud to have worked in a sister unit there at the time.) Perhaps Don does not have experience in insurance regulation; I don't know.

Thus, these senators seem to be asking the President to bilaterally nominate someone who led CMS in the past, who has not made controversial statements. No such person exists, of course.

We have to assume that the senators made as compelling a case as they could. But there's no smoking gun here. There is smoke, however: the fact that so many senators agree is itself newsworthy. Well, where there's smoke, as they say, there's a smoke-making machine.

That machine has been quite busy lately. I hope that the President will use his training as a law professor to see the true crux of the senators' objections. Since the stated reasons in the letter aren't genuine, there must be some other reasons. My hunch is that these senators think Don has been, or will be, too effective. And that they must win at all costs, even at the costs of logic, and at the cost of depriving more than 30 million Americans of health insurance.

Read a story about President Obama's personal commitment to health care reform.

I began my quest: A MRSA infection

2011-02-26T10:23:00.002-05:00

Kathy Day’s story:
My father had a minor fracture of his ankle, and was in the hospital for 12 days of rehab, and then was home for a day and a half. Then he collapsed, and was brought back to the hospital. On admission, they diagnosed him with pneumonia. After he was in the hospital for six days and after he developed a MRSA urinary tract infection after a catheter insertion, I asked for a sputum culture (I'm a retired E.R. nurse, so I know about these things). It took them a day and a half to get the results, which showed them it was a MRSA infection. We'd been visiting him with no precautions; now they told us to use full precautions – gowns, gloves, and masks.

Dad was in the hospital for a total of 20 more days. He suffered through sepsis, complete loss of energy, appetite, and independence. He got blood transfusions, and very strong IV antibiotics. His treatment caused him thrush, a body-wide allergic reaction and loss of hearing. He had been living independently with my mother at home before. Once his acute care (hospital) was "complete" he was sent to a nursing home. He had become a totally bed-bound nursing home patient because of this, and couldn’t sit up without passing out. After nine weeks in the nursing home, in an isolation room, he became very depressed. In total, he lost a third of his body weight. He never walked again. What happened to him wasn’t so rare, as a month before he’d been admitted, two joint replacement patients had had MRSA in the same small 25-bed hospital, and had died from it.

After this happened to my father, I began my quest for MRSA prevention. I wrote letters to the hospital, did research, and came upon Jeanine Thomas, who was the founder of MRSA Survivors Network in Chicago. She's a real powerhouse! She got a law passed in Illinois. Then I wrote a proposal for Maine, got the necessary support and a sponsor, Representative Adam Goode. We passed a law in June 2009 to screen all high risk patients for MRSA on hospital admissions.

Kathy Day's advice: If someone is at risk for MRSA, e.g., they're elderly, coming from a nursing home, with ongoing health problems, or are about to have implant surgery, request MRSA screening from the admitting physician for their own safety. For an elective admission, it's best to be screened a week or two ahead of time to allow decolonization (to clear the MRSA from the patient's body) through five days of preparation, including showering daily with Hibiclens, and the ointment Mupirocin for the nose, which is a prescription antibiotic. If you test positive for MRSA before entering the hospital, you should be either isolated or cohorted (roomed with someone with a like organism).

There's a higher risk of infection for surgery involving implants, e.g., knee or hip replacements, or cardiac valve replacements.

Read Jeanine Thomas' MRSA story.

Five minutes of education: Physician-patient communication upon hospital discharge

2011-02-25T10:11:00.002-05:00

From Dr. Jeffrey Schnipper's research:

A patient was admitted for worsening shortness of breath and weakness. Evaluation showed ischemic heart disease [reduced blood supply to the heart], which was managed medically by changing her blood pressure regimen from metoprolol tartrate (50 milligrams, twice a day) to metoprolol succinate (extended release, 100 milligrams, once a day), lisinopril, and isosorbide mononitrate. She came to her nurse practitioner eight days after discharge for a blood pressure check, complaining that she’d been experiencing three days of scalp tingling [paresthesias] and headache; her blood pressure was markedly higher. On questioning, she reported not taking the long-acting metoprolol prescribed at discharge, because of a misunderstanding. She was brought to the Emergency Department, where she was treated, observed for several hours, and discharged home.

This was due to a discrepancy after discharge; she had stopped her short-acting drug and did not realize she needed to start the longer-acting one.

Such misunderstandings are common, partly because changes in medications are made so frequently. Upon an inpatient’s discharge from the hospital, doctors change 40% of the medications the patient has been taking, on average. “Five minutes of education of the patient and having them ‘teach-back’ what they have learned could eliminate the need for an E.R. visit later,” Dr. Schnipper says.

Advice to patients leaving the hospital:

Ask these three questions:

1.What changes should I make to the meds I’ve been taking?

2. Why are these changes needed?

3. What do I need to watch out for?

To ensure you’ve heard the answers correctly, repeat the answers back to the nurse or doctor.

Thanks to Dr. Schnipper, whose article appeared in the March 13, 2006 issue of the Archives of Internal Medicine.

Still waiting: Apology for a medical error

2011-02-24T14:33:00.001-05:00

Jeni Dingman's plaint:

Today it will be 16 years ago that I lost my dear and wonderful mother due to multiple medical errors, miscommunications, and a flawed healthcare system that did not pay attention to the needs of patients and families. As there have been some changes in those years, years that I have freely given to a cause that I hope someday will save lives, 250,000 Americans still die every year due to medical error. The most important change has yet to come. It must concern communications, patient engagement, patient empowerment and partnering. This can ONLY occur if we are welcome and invited to participate by our providers. Most of all, patients and families must be listened to. I do not know what outcome might have occurred had clinicians listened to my mother and I so long ago, but do I know that my pain would not be as intense as it is every single day had we not been discounted, written off and ignored by those entrusted by our family to do the right thing. My mother was NOT anxious as the clinicians indicated, she was in trouble, and no one rescued her, no matter how hard I tried to get them to listen, they didn't, and they never ever apologized either, I am still waiting for that apology.

Thanks to Jeni for her source posting to Facebook.

Here in Massachusetts, many members of the Consumer Health Quality Council of Health Care for All have experienced errors in their families, but have not received apologies. We have filed a bill to encourage doctors and nurses to apologize for medical errors. We hope that any upcoming federal legislation about medical malpractice claims would strongly encourage, if not require, apologies.

Read a story about a hospital's apology.

In a new way: The American Society of Professionals in Patient Safety

2011-02-22T10:26:00.002-05:00

Diane Pinakiewicz and her team at the National Patient Safety Foundation recently announced the launch of the American Society of Professionals in Patient Safety.

In an interview, Diane told the story and described the vision behind it. This is excerpted from our interview:

In 2007, we took stock, and said, We've been working in this area for ten years, and now, patient safety is a legitimate discipline. So how do we legitimize and organize it and help move it forward? We developed the Leape Institute, as a think tank for the field.

There were many passionate people, but no membership organization for them to connect to. NPSF had a membership programs for hospitals, but not one for individuals with patient safety as its uniting principle.

And the field lacked a certification program like the ones there are for Risk Management, Quality Improvement, and so forth.

We want people to understand that this is everyone's responsibility.

Our vision of success for the ASPPS ten years from now would have two parts. First, everyone in the healthcare system who delivers services to patients would have learned, and could exhibit, competencies for safe care. Second, that patients and their families would be educated and involved in a new way in the tenets of patient safety, and they'd know why their involvement is so important.

Read another story about http://www.patientsafetyblog.com/2011/01/recent-progress-by-patient-activists.html">visionary patient safety experts. Thanks to Diane Pinakiewicz for the interview.

Human judgment is better: Patient advocates and fatigue alarm

2011-02-19T22:57:00.001-05:00

Liz Kowalczyk's recent articles in the Boston Globe highlighted the problem of alarm fatigue in Massachusetts hospitals. The noisy alarms are so often false alarms that staff learn to ignore them. Since most of the alarms are false alarms, ignoring them is usually harmless. But sometimes, of course, the alarms are genuine. One set of disregarded alarms led to the death of Madeline Warner in a Massachusetts hospital. Alarms had sounded for 75 minutes, warning that her heart monitor's battery needed to be replaced. Kowalczyk found that hundreds of deaths had been causes by such alarm fatigue in the last five years; indeed, this probably represents only the tip of an iceberg.

"If there were an obvious solution to this problem, we would have done’" it, said Dr. James Bagian, the former chief patient safety officer for the Veterans Administration hospitals, where he said there have been multiple patient deaths and close calls because alarms were turned off or the volume was turned down. "No one has one."

I disagree. There may well not be a technical solution now, given the current state of technology. Human judgment is better. But most humans in hospitals are busy taking care of numerous patients. A dedicated patient advocate, on the other hand, is focused on a single patient. When family members acting as advocates, or professional patient advocates, insist on a Rapid Response by hospital staff, for example, in a de facto humanly-triggered alarm, about half the Rapid Responses are later ascertained as valid, with the benefit of hindsight. That true positive rate of 50% is far higher than the true positive rate of machine alarms. That is one of the most powerful reasons why people should bring a patient advocate, preferably a professional, into the hospital with them.

Advice to hospitalized patients: Bring a patient advocate with you.

Read another story on hospital Rapid Response methods.

In the check-out line: Safe counts for surgical sponges

2011-02-16T22:57:00.002-05:00

Brian Stewart's background is in the investment industry, including investments in medical device companies. To help in his due diligence, he would often reach out to friends, family and outside consultants with clinical backgrounds. Much of that dialogue would result in clinicians sharing their thoughts on issues they often faced in their daily practice. This is where he first became aware of the issue of retained surgical sponges, their frequency and the real economic and human costs. Brian's father, a surgeon, added additional perspective by sharing the realities of the operating room and the typical usage of sponges in surgery. From a number of previous investments Brian had made, he was relatively familiar with various forms of automatic identification, including simple barcodes, two-dimensional codes and RFID technologies. Thinking out loud to his father as they stood together in a line at a grocery store, watching a woman quickly scan each item in their cart and hand them a detailed receipt of each item, he pondered "Why not use a technology of some sort to help nurses count more accurately?" That was the beginning of the company they co-founded, SurgiCount Medical.

Brian and his father worked for years to develop a cost effective, safe solution. Finally they found something that worked well, from the garment industry – it uses iron-on thermal transfer labels. So a bar code on a piece of plastic is basically melted onto the sponge, placing a unique identifier on each sponge. When used with a small handheld scanner, the solution helps increase the accuracy of sponge counts, in that each sponge can only be counting IN once and OUT once. This addresses the underlying issue in the vast majority of retained sponge cases, false "correct" counts. That is still the core of the product that the company Brian is CEO of today (Patient Safety Technologies, which acquired SurgiCount back in 2005) offers, called the SurgiCount Safety-Sponge. That has proven to help eliminate retained sponges and the costs associated with them for those using it, which includes over 65 hospitals, including five of US News and World Report’s 2010-11 Honor Roll Hospitals.

Now, in the February 2011 issue of the Joint Commission Journal on Quality and Patient Safety, there's an article about a multi-year study, the largest ever done on retained foreign objects, in which the Mayo Clinic examines the occurrence rates of retained sponges and profiles the success that Mayo had by implementing the Safety-Sponge System there. Before implementation, Mayo was averaging a retained sponge every 64 days (about one in 8,000 operations). Eighteen months after implementing the Safety-Sponge System and using over 1.8 million Safety-Sponges in more than 87,000 cases, they have not had a single retained sponge. In addition to the usage at Mayo, over 32 million Safety-Sponges have been successfully used in more than 1.6 million operations.

Read a story on a http://www.PatientSafetyBlog.com/2007/01/they-dont-count-non-surgical-towels.html">retained object.

Thanks to Brian Stewart for our phone interview for this blog post and to Stephanie Pavol.

Keeping the love growing: James's Project

2011-02-14T22:39:00.003-05:00

Mary Ellen Mannix's Valentine's Day card:

I hope you enjoy a wonderful day with your special valentine!

James's Project is working to keeping the love growing and we are wearing our hearts on our sleeves today.

This past month James's Project helped a pregnant mom get care she was being refused, a 2-year-old who had a tonsillectomy to find medical coverage for expenses and help in the infection treatment post-op, educate a heart baby's mom about what questions to ask and how to search for a doctor's license, and advocated at the national level for standardizing Congenital Heart Defect screening in newborns via the pulse oximetry.

He wasn't open to the woo-woos: The Urban Zen Foundation

2011-02-10T17:55:00.002-05:00

As a designer for Anne Klein, Donna Karan gave birth to her daughter Gabby the same week a collection of resort clothes was due, even as her boss Anne was succumbing to cancer. Donna's mother died on the day of a fashion show, and her husband died the same week as a show. Through it all, Donna kept working, later leaving Anne Klein to form Donna Karan New York. She got involved in philanthropic work when the AIDS epidemic broke out. It’s now the 25^th anniversary of the start of her fashion label, and two years since she founded the Urban Zen Foundation, located in a large art studio in Greenwich Village in New York City.

Long a New Age devotee, she was transformed by her husband Stephan Weiss' seven-year battle with lung cancer. She says, "Stephen wasn't open to what he would call my woo-woos – all the alternative methodology journeys I would take. But all of a sudden, when he got sick, he realized the importance of them. He did yoga four times a week; he had an Iyengar teacher who would come because he needed postural positions to help him breathe. We did acupuncture, Chinese medicine, massage and raindrop therapy with essential oils. It became obvious to me that this was what was missing in the hospital system."

She was also deeply affected by the struggle of her best friend, Lynn Kohlmann, who died from breast and brain cancer in 2008. "When you get the call, panic sets in: What do we do? As loved ones, we're not trained in health care. But when you're a patient or a loved one, you need a guide….So I asked, 'Who is putting together a movement that is changing the hospital system?' There was a void. No one was integrating" the health care.

Now her Urban Zen Foundation offers a 500-hour Urban Zen Integrative Therapy program that brings together health professionals and yoga teachers who are taught in-bed yoga, meditation, Reiki, aromatherapy, palliative care and nutrition. The participants in the first year, who include doctors, nurses, yoga instructors, yoga practitioners, physical therapists and other healthcare providers, complete 100 hours of clinical rotation at a hospital.

"Our healthcare system today needs help. This is a huge project, and there's a lot of work to do. I have to take it one day at a time. This is in its infancy stage. This is a movement that's being created. I want to join with all these brilliant people: Deepak Chopra, Mehmet Oz, Mark Hyman, Woodson Merrell. If we all join forces, we have a lot of people on this path. It's definitely a mission, and it's the most challenging thing I've ever done."

Thanks to Leslie Bennetts for her source article in the July 2010 issue of Town & Country.

For many years: Crying by doctors

2011-02-08T08:43:00.002-05:00

Dr. Amina Hassan Abdeldaim's letter to the Editor:

"A Mantra: No Crying in the CAT Scanner" on Feb. 1, Dr. Ellen Feld's exquisite telling of her experiences during her own treatment for breast cancer, finally allowed me to let go of the tears I have been blinking back for many years.

As a physician at a cancer hospital, I am in awe of the patients' stoicism and strength. If my patient cries, may I cry too? Will it help or hurt the patient to know I may have a dose of "unprofessional sympathy"?

Advice to doctors: Your compassion and empathy are much appreciated. I hope you can find some way to show that, maybe by letting yourself cry.

Read another story about compassionate physicians. Thanks to Dr. Abdeldaim and the editor of the New York Times, where her letter was published today.