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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.