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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"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

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

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

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

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

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

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.