From April 14 to April 18, I attended the Institute of Patient and Family Centered Care intensive training course.  I was alerted to this conference by my colleague Lisa Freeman.  I was unfamiliar with this approach to healthcare, but I had attended a very nice presentation by Bev Johnson, Director , for the Patient Centered Medical Home practices here in Maine.  She is a brilliant and kind teacher.  She recognizes that Patients and their families must partner  with providers to improve healthcare.   So, I knew that at least Bev’s involvement in this organization would make this training worthwhile.

I have been involved in Patient safety advocacy and activism for over 4 years now.  I belong to and affiliate with different organizations and I attend meetings, conferences, online webinars, phone conference calls, PLUS, I read everything I can get my hands on about Patient Safety.  The solutions are out there to make healthcare safer, better, and cheaper.  I know the problems and the negatives in Healthcare, but I also know that healthcare can be an miraculous cure for what ails you.  I have definite ideas about solutions for problems, but the quandary has always been…How do we get there?

The IPFCC training taught me how.  We include patients and families in every aspect of care, from the primary care office through discharge from the Hospital and into post Hospital care, whether it is in LTC, rehab, or at home.   Partnering WITH patients through out the journey of care is absolutely essential.  Patient and family advisory councils at every level are necessary.   TOs and FORs are removed from conversations regarding patients and families and in their place we put WITH.

I was skeptical.  What exactly is accomplished when providers partner with patients and honor them and their families? These are the measurable improvements that I heard about this week.

1. Reduction in HAIs (my initial reason and primary focus for doing this work!)

2. Reduction of medication and medical errors

3. Reduction of Hospital readmissions

4. Improvement of HCAPS numbers, improved Patient Satisfaction

5. Improvement of Healthcare outcomes.

6. Reductions of costs.

7. Elimination of Visiting Hours.   Family members are partners, not visitors.  Ability of all patients to have a 24 hours bedside advocate.

8. Increased honor and respect of patients and patient dignity.

9. Improved employee satisfaction and improved employee retention.

10. Patient Portals to Electronic Records and how to use them.

11. Addresses all 3 arms of the IHI Triple Aim.

This is the short list.  I heard stories of success, from patients and patient advisers,  and from Hospital administrators, providers and workers.  I learned that this work is not easy, but it is worth every minute of effort.    It is an approach that is inclusive of everyone involved and affected by healthcare  in a collaborative partnership.

Now what?  I plan to tell my colleagues at the Maine Quality Counts Consumer Advisory Council about my training.  I hope to mobilize them and MQC to do a survey of Maine Hospitals and to assess where Maine is at in PFCC. How many Patient and Family Advisory councils do we have in Maine, and are they honored, valued and included in the work of caring for patients?   Then we will go from there.  I has to happen.  I hope that it will happen very soon.  We need the change. We need to do whatever it takes to make patients safer, control costs, and preserve our ability to access care.

Last week I attended the Maine Quality Counts annual conference about achieving the Triple Aim in Maine.  This week I connected some big ole dots on how to do the work.

Every single day, I learn.  I am learning more now than I have in 43 years as an RN, about being a patient.  I have learned how to be a safe. engaged patient, from other patients and from patient safety activists and advocates.  A rare few professional doctor and nurse advocates are stepping forward too, and talking about important patient issues, like safety and good practices.  They discuss the necessary steps to avoid medical harm or infections in healthcare settings.  They talk about how unsafe staffing levels in hospitals and long term care facilities is a contributing factor to patient harm and complications.  Some of my colleagues are engaged more in the issues of healthcare transparency and accountability of both quality and costs.  They fight for affordable healthcare and reporting of all medical harm.  Some even work toward meaningful apologies by professionals and hospitals if harm has occurred.

I have come to realize that I worked for a dysfunctional industry and I was complicit in it.  That makes me feel sad and guilty.  I got coopted by my employers because I needed the paycheck.  I know, that is no excuse, but  I was part of things that I am ashamed of.

Example#1

When I was called “into the office” once and told about a woman who had been harmed when I was a triage nurse one day, I felt absolutely awful.  I remembered her in detail.  I remembered that she was in excruciating pain, and that her primary nurse was snotty to her and made derogatory remarks about her.  I remembered her very concerned and dedicated husband.  I remembered everything, and my first reaction was that I really wanted to talk to that patient.  My instructions were “you do not talk to anybody about this except the legal team.  you do not even talk to your coworkers about this”.  This patient had been harmed during surgery prior to her ER visit and then she was RE harmed in our ER that day.  She nearly died as a result.  A lot of years have passed, but someday I am going to call her and try to talk to her.

Example #2

When I worked in a Hospital employee health department, I got a call one day from the Loss Prevention Director.  He asked me about a SOAP nurses note I had written.  He wanted me to change it.  I believe he wanted that because it would help the Hospital’s case against that employee in a Workman’s Compensation hearing.  I was very proud of myself that day for not cow towing to that man.  I absolutely refused to compromise my professional integrity to “do good” for our employer.  The entire experience disgusted me, but that time I did stand by my patient and my convictions.

Example #3

Way back in my very early days of RN practice, a nurse always assisted the doctor. If  Dr. said jump the nurse asked “how high?”  One doctor I knew was a mean red faced bastard.  He was mean to me, and mean to patients.  He refused to allow any parents into the room when he sutured their children.  One child cried uncontrollably, even with my attempts to comfort him.  The doctor stuffed a wad of gauze sponges into the child’s mouth to silence him.  I was horrified….and I reported him to his superior.  But, I never told the parents.  I was complicit in that abuse, because I was scared out of my mind of this horribly mean doctor.   My fear overcame my moral responsibility to the patient and family.  It is the legal responsibility of all healthcare professionals to report known child abuse.  I was very young, stupid and scared.

I hate that all of this and a whole lot more,  happened during my practice as a nurse.  I have come to know that not all doctors and Hospital leaders are evil, but some are, and  many, if not most see evil every day and they turn away and ignore it.  I did to, and I live every day with that guilt.   The entire practice of nursing and medicine needs to be revamped if patients are ever going to become the priority.  Professional schooling needs to teach ethics, humanity, caring and compassion, instead of elitism and protectionism.

What can I do about it?  I can work my tail off in retirement to make things different for patients….ALL patients.  I can share my professional and personal stories in my writing, my presentations, amongst my friends and colleagues to make a difference.  I feel a burning need to do this…..something like breathing.  If I don’t, how can I ever say that I was/am a nurse?  How can hold my head up and be proud that  I helped thousands of sick vulnerable patients.  Sadly, not all of my patients’ needs were met, and some were even harmed.   I am proud of the good I did for patients, but now it’s time to see about the ones I (and others) have failed……

I was seen a month or so ago for floaters and flashers in my left eye, in  Bangor, Maine.    I walked out of EMMC ER without being seen,  because of a very poor  and unprofessional reception, watching a suffering young woman being ignored, and a very long wait time.  I went across town to St Joes.  I was nicely welcomed, quickly and efficiently triaged, waited an hour in an exam room, and was seen by a competent and nice nurse practitioner for about 5 minutes, maybe less.  I had no medicines, no sterile instruments, no diagnostics, no treatments,   and nothing extra.  I walked out with instructions and an appointment with an ophthalmologist the next day.  I had a good experience of care.

Grand total   $1313.85.  HOLY CRAP!

I looked up St Joe’s list of usual ER charges online.  My charges, on my itemized bill were way out of whack.  So, even though my copay will not change ($125), I called St Joe’s billing inquiry line.  The lady was very nice until I asked to participate in the weekly inquiry meeting where they will discuss my bill.  I want to know what they have to say about my bill and be part of the discussion.   It was obvious that this was really really weird for them to deal with someone who actually wants transparency and details about how they came to this wild price for my visit.  She finally relented and said she would tell the supervisor who participates in their billing inquiry meetings that I want to be there.

I asked the billing lady if she has ever heard of the concept of “nothing about me without me”.  I know that this generally pertains to collaboration and communications about our actual care and plans for it, but why not billing and costs.

After reading Rosmary Gibson’s new book. Medicare Meltdown, I fully realize how important it is for healthcare consumers to fully engage in all aspects of quality and cost in healthcare.  We need to protect our ability to access and afford healthcare, because Hospitals, providers, medical device and pharmaceutical companies, for profit companies and others are usurping all of the cream..off the top of the fresh milk bucket of healthcare. They do this with predatory pricing and charging of all patients, and getting what they can from all payers, public and private.      If we do not engage, our existing systems will not survive.

$1313.85 for a 5 minute visit is outrageous and unexplainable….and I want to know details about how they came to that astronomical price.  We all need to become inquiring minds when it comes to healthcare costs and quality.

On April 2, Mike and I headed to Augusta for an overnight stay.  I had a very busy agenda lined up, mostly involving the MQC conference the next day. I helped to plan the event and I was going to participate in a couple of speaker panels.   But, I also planned to go to the Maine State House to testify in favor of LD 1066, an act to accept the Medicaid expansion for Mainers in need.  We arrived at around 1pm and with my 20 copies of testimony in hand and we left our car on the 4th floor of the garage across from the State House.  As we approached the door to the stairway, a woman suddenly collapsed in front of me.  She dropped like lead right onto her face, without breaking her fall in any way.   The woman with her was walking ahead and we all heard the thump.  Judy, the woman who fell, was knocked unconscious and she likely broke her nose and maybe other facial bones.  There was a lot of bleeding.  I immediately went to her side, plopped onto my rump on the ground and assessed her airway and pulse and her medical alert bracelet.  She was breathing, thank God.  I talked to her over and over, for about 3 to 4 minutes until she slowly came around.  I wasn’t the only one to help.  A group of complete strangers gathered and offered help.  One called 911.  Judy’s friend called her family and left messages for them.  Another lady brought a blanket to keep Judy warm.  Mike stood by in case we needed anything.  Then the EMTs arrived (heroes, each and every one of them).  Who knew that you cannot bring an ambulance up into that garage?  They lugged all their equipment up 3 flights of stairs.  They quickly and efficiently assessed Judy, and rolled her onto a back board, stabilized her neck, got some history from me, and then carried her back down those stairs.  They also facilitated Judy’s friend’s trip to the hospital ER, by telling her to bring her car around and to follow the second emergency vehicle…they showed her the way.  A very concerned and helpful  group of strangers rallied around Judy, to help her on her unexpected journey to the Hospital.

Judy was a kindred spirit.  She was on her way into the State house that day to testify against the use of insecticides on School yards and playgrounds.  She wanted to help protect our children from the toxic harm of chemicals.   She is just like me, she is an activist.

Judy’s fall impacted me in huge way.  Her fall is an example of how in one single second, our lives can change.  I suspect that Judy had a brain hemorrhage because of the medication she was on and the nature of her fall.   If I am correct, her life was altered in one second.  She was just beginning her healthcare journey, and already a dozen or more strangers had rallied to help her.  All of us were people who were not afraid to get our hands dirty to help another human being.

800 Mainers, also mostly strangers to each other, showed up on April 3, 2013 at the Augusta Civic Center to get their hands dirty, and to rally around Maine patients.   They came to hear the messages that Rosemary Gibson, and Dr Donald Berwick brought.  There were Healthcare providers, payers, consumers and leaders.  The messages they heard from our fierce bold speakers were that our healthcare system is unsustainable, unless we want to do without everything else we have grown accustomed to in our lives, like schools, libraries, snowplows, and food.   We heard that there is more than one way to get our hands dirty and take care of human beings.  Dr Berwick called them airplanes…..he talked about  discussions in Washington DC, where some said machines can’t fly, and he said “YES THEY CAN, LOOK UP, SEE THEM CIRCLING OVERHEAD!”   Because 800 people came to listen to-oh-so smart speakers and their dire message, I think they are willing to rally.  They are willing to do the work and address the costs and quality issues that we need to improve and sustain our healthcare system.

I was honored and so proud to be part of the MQC event.  I took part in a television interview seated next to Dr Lisa Letourneau and Rosemary Gibson!   I wouldn’t have even imagined that a year ago.  I managed to get back to the State House on April 2 to testify for the Medicaid expansion because I’d hate to think of any Maine woman having uterine cancer (like I did)  and not getting checked for it, because she couldn’t afford the visit to the doctor.  That evening, the MQC  hosted  a dinner at the Senator restaurant for the event planners, staff and speakers.   It was a very warm and inviting group. Everyone introduced themselves and each other.  Then we all trouped off to our homes and hotels to rest and prepare for our huge event April 3.

Judy’s unexpected fall and injury reminded me that she is what our work is about.  Her only thoughts must be to get back on her feet, safely and quickly (without breaking the bank)  and to get back home to her family.   And, eventually, when she is well again she can get back to the State House with her message.   Isn’t that exactly what we all want for ourselves when we are sick, and for all of the patients we work for.   I do believe healthcare reform is happening in Maine.

Although I am very inspired and enjoying the afterglow from the MQC annual conference, I have determined that helping Judy was the most important thing I did during my two days in Augusta.  She grounded me, and removed the stars from my eyes and taught me that helping and humanity is what it is all about.

Addendum:  I got this message just now, about the State of the State show interview.

This our State of the State Show with Rosemary Gibson, Lisa Letourneau and Kathy Day, it will air between April 16-26th

Time Warner Cable affiliates statewide air State of the State on Channel 9 on Tuesday the 16^th and 23rd at 7:00 p.m., Thursdays the 18^th and 25^th at 6:00 p.m., and Friday the 19^th and 26th at 10:00 a.m. However, air times may vary due to periodic program preemptions and rescheduling. To check the current Time Warner program schedule in your area, click here.

Other community television stations that are running the program are WOGT, Ogunquit; WVACTV Channel 2, Bethel; CATTV, Baileyville; Harpswell (for latest listings,click here), Freeport; Bath Community Television Channel 14, Mt. Blue Community TV, and Brunswick TV (for latest listings, click here)

April 16-26

Transforming Health Care in Maine

Guests:

Rosemary Gibson, National health policy advocate, speaker and author. Author of The Treatment Trap.

Kathy Day, Maine Quality Counts Consumer Advisory Council

Lisa Letourneau, MD, Executive Director, Maine Quality Counts

The lawsuit against the Hospital that infected my father was dropped on March 26th, on a technicality.  The technicality was a misunderstanding and had nothing to do with the facts.  The facts are and always will be that Dad’s Hospital had a MRSA outbreak.  He was the 3rd of three patients who became infected in his Hospital in a month’s time and all three died.

Who wins and who loses in  Dad’s medical harm case.

The first thing I’d like to do is thank my attorney for taking Dad’s case.  Dad asked me to do this, when he found out that his Hospital had infected him, and my attorney did this work on a contingency.  He is a saint for doing this because most lawyers would not take an Hospital Infection case. Even though patients die every day because of Hospital Acquired infections, these cases are notoriously difficult to win.  My attorney worked for me for free because he sees and understands that  injustice.  I am eternally grateful to him for taking Dad’s case.

Of course the biggest loser was Dad.  He lost his strength, ability to walk and eat, his independence, and what remained of his health.  He went from being upright, walking with a walker, and back in his own home after 12 days of Hospital rehabilitation, to being a completely bed bound patient. He lost it all overnight.  Then ultimately, he lost his life.  When he died, he was in a stark lonely nursing home isolation room.  That was the last place on earth that he wanted to be.  His death was a release from loneliness,  isolation and suffering.

My family also lost.  My brothers and I lost our father, and all of our kids lost their grandfather.   My mother lost her love of 62 years.  Although Dad was disabled, my parents had lived independently in their own home and they looked after each other.  They were inseparable, except by death.  My mother now lives a very solitary life…alone in the home that Dad built for them.  I live 70 miles from her and my brothers live even further away.  Her life has continued to shrink since Dad left.  When we talk on the phone, or visit, her sadness and loneliness comes through.  Yet, that is her home, that she shared with Dad, and she is not at all interested in leaving it to live closer to me.

Then there is the monetary loss.  Medicare and private insurance paid almost $50,000 for my fathers care at the end.  Around 2/3 of that was for care needed because he became infected in his hospital.  Those were costs that I believe should have been the Hospital’s loss. Even though they failed to protect my father from infection, they got paid a lot, in full.   I guess that means the Hospital was a  winner, of money at least.

When my father went into the nursing home for 9 weeks, my parents paid out of pocket for that.  If he had not been infected in the Hospital, it is likely that he would have continued to gain strength after rehabilitation and been able to continue living at home with my mother.  My parents, again, lost financially, around $17,000 for long term care.  That was an out of pocket expense to my parents, an expense that was again a result of the infection he contracted while rehabilitating from a minor ankle fracture.

So, it appears that the biggest losers were my father, my mother, and my family. But, there were other losers too.

The Hospital that cared for my father also lost.  They lost my family’s respect, admiration and trust. It was in that Hospital that I started my nursing career.    According to the questions and comments of their defense attorney (who represented them and spoke for them),  they seemed to think that my father’s infection was his own fault. That makes me very angry.  They kept the infections in their facility a secret, so my family couldn’t possibly have known the risk my father faced. Had they been more transparent, we could have made a more informed choice for his care.   From my observations they hadn’t changed anything to prevent MRSA infections, even though 2 other beloved seniors from the community had already died with MRSA before my father became infected.  Those other two families suffered great loss too.

The hospital also lost the money that they paid their “super” attorney. I wonder how much the Hospital  lost to this lawyer.  The attorney’s legal tactic seemed to be  1. place blame on Dad for his Hospital Acquired MRSA infection, and 2. belittle/discredit me and my volunteer patient safety work.    Rather than the Hospital admitting fault, apologizing, fixing the problem  and offering my family emotional and financial support, they paid the attorney (probably a ton of money)  to further alienate my family.   I pity any attorney who makes a living by attempting to beat down victims and their families, and for facing a job like that every day…..people like that seem ethically and morally deficient to me.  So, actually, in my opinion, that type of attorney is a loser too!  I also pity the Hospital for not seeing how much more constructive it would have been to work with me and my family to come to resolution and to welcome us to work on the solutions, rather than further alienating us.

My father’s community lost too.  They lost 3 beloved seniors, who had worked, loved and raised families  there.   They were cherished by their families, their churches and their friends and neighbors.

What could everyone have done differently?  The Hospital could have made aggressive  changes immediately after the first of those 3 beloved MRSA victims became infected.  The changes are outlined in the CDC recommendations, which they claimed they followed. If  they had actually done what they said they did, they could have prevented my father’s infection and he could have lived longer and independently.    They could have been transparent about the infections, so my family would have been fully informed before we chose where my father would get rehabilitation for his broken ankle.  My family could have engaged more aggressively and asked more questions about the Hospitals infection rates. We also could have spent more time at his bedside and been watchdogs to be sure that every single person who touched him had washed their hands.   The housekeepers could have cleaned the rooms better. The doctors could have made more effort to give the right antibiotics by doing appropriate cultures and sensitivities of Dad’s sputum.  They could have begun screening patients for MRSA immediately after the first victim became infected in their hospital,   to be sure that anyone carrying the organism was kept separate from those who did not carry it.

My father definitely could have been better protected from infection, and he could have lived longer.

When we get right down to it, the only one who ends up winning from this case is the Hospital’s attorney….his bank account is fatter.  The  rest of us involved have all suffered a great loss.   I feel badly for everyone who lost, but I can’t feel sorry for the’ Hospital’s attorney.  Maybe I will find a way to understand him and feel some compassion for him in the future.  I just hope for his sake that it doesn’t involve him losing a family member because of preventable infection.  I want everyone, including the opposing lawyer’s family, and the Hospital that infected my father,  to benefit from my work to stop Hospital Acquired Infections and Healthcare harm.  I fully intend to move on and make progress with this work.

I was interviewd for this article.

http://www.kaiserhealthnews.org/Stories/2013/March/18/expanding-number-of-groups-offer-hospital-ratings.aspx

Hospital Ratings Are In The Eye Of The Beholder

By Jordan Rau

KHN Staff Writer

Mar 18, 2013

This KHN story was produced in collaboration with

How good a hospital is St. Mary Mercy Livonia Hospital? Depends on whom you ask.

The Leapfrog Group, a respected nonprofit that promotes patient safety, gave an “A” to this Michigan hospital. The company Healthgrades named it one of America’s best 50 hospitals.

But the Joint Commission, a nonprofit organization that accredits hospitals, and U.S. News and World Report omitted St. Mary from their best hospital lists. Consumer Reports gave it an average safety score of 47 points out of 100, citing high numbers of readmissions, poor communication with patients and excessive use of scans. Medicare, which has a new program rewarding hospitals for meeting certain quality measures, is reducing St. Mary’s payments by a fraction this year.

Evaluations of hospitals are proliferating, giving patients unprecedented insight into institutions where variations in quality can determine whether they live or die. Many have similar names, such as “Best Hospitals Honor Roll,” “America’s Best Hospitals” and “100 Top Hospitals.” Illinois, Florida and other states have created their own report cards. In some places, such as California, there are more than a dozen organizations offering assessments on hospital quality.

But those ratings, each using its own methodology, often come to wildly divergent conclusions, sometimes providing as much confusion as clarity for consumers. Some hospitals rated as outstanding by one group are ignored or panned by another. Ratings results from an individual group can change significantly from year to year.

Hospital Ratings Websites

A list of the various sources for hospital ratings

“We’ve alternatively been labeled the least safe hospital in Maine and the safest hospital in Maine,” said Dr. Douglas Salvador, vice president of quality at Maine Medical Center in Portland.

And the ratings do not always jibe with the views of authorities who oversee hospitals. For instance, UCSF Medical Center has gotten good grades from multiple safety raters even as California public health officials have fined it $425,000 repeatedly for endangering patients.

As ratings multiply, more and more hospitals have something they can boast about. A third of U.S. hospitals—more than 1,600 — last year won at least one distinction from a major rating group or company, according to a Kaiser Health News analysis. In the greater Fort Lauderdale hospital market, 21 of 24 hospitals were singled out as exemplary by at least one rating source. In the Baltimore region, 19 out of 22 hospitals won an award.

“I worry a lot about these ratings,” said Jerod Loeb, executive vice president for health care quality evaluation at the Joint Commission. “They’re all justifiable efforts to provide information, but at the end of the day every single one of them is flawed in some respect. Rather than enlightening, we may be confusing.”

Not A ‘Complete Picture Of The Care’

There are so many report cards on hospitals that the Informed Patient Institute runs a website that grades the raters. Carol Cronin, its executive director, said most report cards are not easy for consumers to use. “A lot of them don’t help users quickly understand which hospital is better than another,” she said.

But many hospitals are eager to trump these distinctions in their marketing. Healthgrades, U.S. News and Leapfrog not only encourage this but also profit from it by charging licensing fees to hospitals that want to advertise their awards. “A hospital cannot buy an award, they must achieve it,” Healthgrades said in a statement.

Dr. Andrew Brotman, chief clinical officer at NYU Langone Medical Center in Manhattan, said the fees can be substantial. “Healthgrades, which is one we did well on, charges $145,000 to use this even on the website as a logo, so we don’t do that,” he said. “U.S. News is in the $50,000 range. Leapfrog is $12,500.”

Healthgrades and Truven Health Analytics, which publishes the 100 Top Hospitals, offer consulting services to hospitals that want to improve their overall performances. Jean Chenoweth, a Truven senior vice president, said the list doesn’t earn Truven any money but it “gives the company a lot of visibility.”

Consumer Reports bars hospitals from using its ratings in marketing, but patients must subscribe to read them online. (Others generally provide free access to ratings on their sites.) The Joint Commission does not charge hospitals that make its top quality list.

A Pew Research Center survey found 14 percent of Internet users consulted online rankings or reviews of hospitals and medical facilities. Florence Harvey, 70, said when she moved to Washington, D.C., last fall, she picked a health plan and doctor affiliated with Washington Hospital Center after reviewing all the local hospitals rankings on U.S. News’ website. “That was the one that had the best across-the-board ratings,” she said.

But Harvey may be an anomaly. Dr. Peter Lindenauer, a professor with Tufts University School of Medicine based in Springfield, Mass., said the limited research on rankings “suggests they have had very little impact on patient behavior.”

That’s not surprising since many admissions, such as those due to a heart attack or car crash, have an immediacy that rules out comparison shopping. Also, researchers note, many patients defer to their physicians’ recommendations or go to the hospital where their chosen surgeon has privileges. Still, rating groups say the ratings help keep the pressure on hospital executives to keep quality up.

“Patient safety has to be a priority 24-7,” said Leah Binder, Leapfrog’s president. “The minute it slips off the priority list, that impacts the rating.”

The calculations that go into these ratings are complex. Most hospital assessments synthesize dozens of  pieces of data Medicare publishes on its Hospital Compare website, including death rates and the results of patient satisfaction surveys. They also examine other sources and use private surveys to create user-friendly lists or grades, which they display on their websites.

The Joint Commission looks at how frequently patients received recommended treatments, such as flu shots for those with pneumonia. Consumer Reports examines the numbers of patients who die or are readmitted, infection rates and Medicare patient surveys of their experiences. Leapfrog looks at data from its surveys of hospitals, the consistency with which hospitals followed safe surgical practices and frequencies of infections and some types of patient harm. Healthgrades analyzes detailed Medicare records to find death and complication rates for 27 procedures and conditions.

Truven considers profitability along with quality in its assessments. U.S. News surveys physicians about which places they think are the best, and those reputation ratings account for a third of most of its assessments. U.S. News ranks hospitals by geography and singles out hospitals that do well in 16 specialties, including cancer, neurology and orthopedics.

“Ratings and ranking programs certainly offer people information they can use to make their hospital selections, but we don’t recommend relying on any one of them completely,” Jennifer Kennedy, a spokeswoman for St. Mary Mercy, said in an e-mail. “None are able to tell the whole story or paint a complete picture of the care that is delivered.”

Patient safety rankings are based on how frequently correct procedures or errors occur, so hospitals can get good grades even if they have made some egregious errors. Leapfrog gave a “B” to UCSF Medical Center in San Francisco even though California regulators have penalized UCSF eight times for infractions since 2008, most recently for leaving a sponge in one patient and a plastic clip in the skull of another. Those errors cost UCSF $200,000 in fines.

Dr. Josh Adler, the chief medical officer at UCSF, said penalties were partly a result of the hospital’s policy to make sure that all errors are reported to authorities. “The key is that we constantly strive to deliver the highest quality, safest, and most satisfying care, and that we are a learning organization,” he said in an e-mail.

The ratings groups believe the public benefits from the multitude of ratings. Dr. John Santa, who directs Consumer Reports’ health ratings, said consumers benefit from different vantages just as they do for cars or electronic devices, and the competition spurs each rating group to get better. “We think that’s consistent with good science,” Santa said.

Avery Comarow, health rankings editor for U.S. News, agrees. “People go to hospitals for different reasons and priorities,” he said. “I’m not sure there could be a single rating system that can do it all.”

Many of the hospital graders are expanding their awards. Last year, the Joint Commission identified 620 hospitals as “top performers,” up from 406 the previous year. Healthgrades now provides awards for emergency rooms, maternity care, pediatric care, bariatric surgery and gynecology surgery. In 2011, U.S. News started identifying the best hospitals in regions of the country, and identifies 748 hospitals as a “best” hospital in at least one specialty.

But because of limitations in data, the ratings cannot always offer patients the kind of specificity they seek. When Kathy Day of Bangor, Maine, needed a hysterectomy in 2011, she wanted to compare hospital infection rates for the procedure. But she said when she called Brigham and Women’s Hospital in Boston, “the response I got from them was, ‘We don’t have to give you that information, we’re not required to report those infections until next year.’ “

“I said, ‘I have cancer this year and I need surgery now, so next year doesn’t help me,’” recalled Day, 63, a registered nurse and consumer advocate. She said the hospital ultimately told her its infection rates were average, but the attitude turned her off so much that she underwent surgery successfully at Maine Medical Center.

Brigham and Women’s website publishes six types of infection rates, but not one for hysterectomies. “We are continually working on making data about more types of infections available,” a hospital spokesman, Tom Langford, said in an e-mail.

Constant Turnover

Much of the quality data is rudimentary, as the science of evaluating hospitals is still in its adolescence. Adding to the confusion is that hospitals can rise and fall from year to year as groups tweak their methods of assessment and as hospital performance shifts, even slightly. A study sponsored by the Commonwealth Fund, a health care philanthropy in New York, found that only 46 percent of hospitals ranked as top performers by Thomson Reuters in 2008 were also winners in 2007. In the Joint Commission’s rankings, 583 hospitals missed being designated a top performer because they fell short on just one of 45 measures.

In some cases, hospitals that have won awards are being penalized financially by Medicare for falling short on the government’s quality assessment. Saint Francis Hospital in Tulsa, Okla., which is losing 0.54 percent of its Medicare payments this year under the government’s quality program, is a Healthgrades Distinguished Hospital for Clinical Excellence and was ranked the second best hospital in Oklahoma by U.S. News.

Paul Levy, the former CEO of Beth Israel Deaconess Medical Center, said he is concerned that as awards multiply they may encourage complacency. “There’s a danger,” he said, “that some hospitals look at their excellent ranking and say ‘See, we’re there, we’re done,’ while process improving has got to be a never-ending philosophy.”

Some of the hospitals that do the best in the rankings have limited respect for them. Advocate Christ Medical Center in Oak Lawn, Ill., last year received praise from Leapfrog, U.S. News, the Joint Commission, Truven and Healthgrades. But Dr. William Adair, vice president for clinical transformation, says the hospital doesn’t license any of the distinctions. “We’re all made a little bit uneasy, to be frank about it,” Adair says. “Some of these organizations are looking for revenue. It blurs the effectiveness of the ratings processes.”

Still, many hospitals are happy to use the praise. Dr. Brotman from NYU said: “Even though there’s not a hospital executive who won’t tell you that they have a great deal of skepticism about a lot of the methodology, there’s not one who will tell you they don’t want to be on the lists.”

This article was produced by Kaiser Health News with support from The SCAN Foundation.

The purpose of the following letter, which I recieved in my snail mail yesterday, is to attract healthcare ‘customers’ and make money.  The medical device company that is sponsoring this event produces surgical mesh.  The doctor who signed this letter is promoting a product for American Medical Systems, INC.  Surgical mesh can cause horrible complications that are difficult and at times impossible to reverse.  Do not be fooled by the term “minimally invasive”.

http://www.truthinmedicine.us.com/

Read this letter carefully and then look at who is sponsoring this event.   Take your health concerns to your trusted family doctor and see if there are any natural remedies, exercises, physical therapy or other approaches to your problem.  Except in genuine emergencies and certain problems like cancer,  surgery should be the last approach to a problem, not the first choice.  Find out about the possible complications of any surgery, including infections.  Get your surgeons complication rates before consenting to surgery.

Women…beware.  This type of ad may lead many of you to unnecessary and possibly dangerous surgery.

March 5, 2013

When getting up from my chair yesterday, I saw a  lighting like crescent shaped streak in the periphery of my right eye.  “Hmm, that’s weird” I thought.  I quickly dismissed it because it was  instantaneous and painless and I could see fine.  Well, it kept up all day long.  Then later in the afternoon, after putting make up on under bright lights, I had a big black worm like floater.  It looked like soot from a candle.  I have had that off and on ever since, along with just rare “lightening like” flashes.  I had an important meeting last night, but before I went, I called my primary care doc.  She responded quickly and recommended that I get my eye examined sooner rather than later.  It was probably dumb, but I went to my meeting about healthcare first, and then to the Eastern Maine Medical Center ER.  I know, my eye should have been my primary concern…we only get two of them.

At approximately 9pm, my husband Mike  went with me to the EMMC ER.  This is may alma mater.  I worked as a triage nurse in this very same ER in the 90s.  It has changed a whole lot since then…and not at all in good ways.

The first thing I had to do was go through a TSA like screening.  “Walk through here, put your purse here, remove pocket contents, walk through the scanner, come over here and get your purse, etc etc.  They did not frisk me however.  The Bangor TSA did frisk me from head to toe last week.  I think it’s time for some profiling.  An old lady like me is 99.99% unlikely to be a threat to anyone.

Next I went to the registration desk.  I stood there for a few minutes while 2 young women had their backs to me about 6 feet away.  They chatted and obviously did not know I was there, so I moved the chair in front of me and made a noise.  No response.  Then just as I quietly said “excuse me”, the security guard came over to alert them to the fact that I was standing there waiting. They finally turned to look at me. I had begun to sit down at one widow, but was quickly told to “come over to this chair”. There was no Please and no Thank You.   I followed my direct order.   The young woman who registered me might as well have been a robot.  She never said “hello”,  and NOT once did she make eye contact.  She was cold and lacked empathy as she mechanically ‘registered’ me.  Her “triage” question was “What’s going on tonight”.  She got the job done, but I could have done just as well at a kiosk with no human  being part of it, similar to printing out a boarding pass at the airport computers.   I was instructed to “sit over there” and wait and the triage nurse will come get you.  There were not many people in the waiting room and I figured (wrongly) that it wouldn’t be long.  The triage nurses are behind closed doors with glass and blinds blocking their view of the waiting room.  A young woman and her mate (husband, boyfriend or partner) sat about 15 feet from me. She was trying to lie on her side in an upright chair.  She was crying and so was her mate.  She was clutching her abdomen and obviously in agony.  My observation was that nobody paid attention, nobody cared, and nobody monitored what was going on in that waiting room.  I was appalled.

When Mike noticed  the sign that said the wait time was  2 to 3 hours to be put in a room, I made a quick decision.  I guess if they put that sign up, we “patients” should be patient and willing to just accept that.  Even if we are in agony, and crying in pain, like that poor young woman I described earlier,  we are expected to wait.  NO, that is not acceptable.  I made a phone call to the competitor, St Joseph Hospital, and I was told that the wait would not be that long.  I told the triage nurse and the cold distant registrar that I would be heading across town  to the competitor.  The nurse looked a tiny bit surprised, but said “oh, ok, that’s fine”.  It seemed that this was not the first time this had happened…and I would guess it happens a lot of the time. As a nurse, I feel guilty that I did not offer to give that poor suffering young woman a ride over to St Joseph Hospital with us.  As a patient, I had absolutely no regrets that we left.   As both, I am very sad that by my observations, the EMMC ER has not improved in customer service and efficiency of care.

St Joseph Hospital reception was a complete turn around from EMMC.  I was warmly greeted, with eye contact and a smile. The triage nurse took me back to the triage room immediately after I took my coat off.  She was about my age and I knew her name, although we had never met.  We connected immediately.  I chatted her up while she efficiently triaged me.  We continued our conversation behind a closed door in the ER exam area.  She is a long time ER nurse and knows so much.  I waited over an hour in that room after she left.  She walked by and asked if anyone had been in to see me.  I said ‘not a soul”.  It was only about 5 minutes later that a Nurse Practitioner came by to examine my weird eye.  He was kind, thorough and efficient.  Aside from a boring hour in the exam room, my visit to St Joes was excellent.

Today I will see an ophthalmologist.  I hope my retina is intact and where it belongs and I have a good feeling that it is.  My ailment is not life threatening at all, and  I do realize that.  But, I fear that even if it had been, my greeting at the EMMC ER would not have been much different, unless I arrived in a speeding ambulance with lights flashing and a warning to the triage nurse. (Update: my eye is fine..no detached retina.)

When I worked at the triage desk at EMMC, my desk faced the entrance door, and the waiting room.  There was no barrier.  The registrars sat perpendicular to my desk and they also faced the door and waiting room.  We all watched what was happening there, even while we registered and triaged other patients.  Once a patient had been signed in, we were responsible for observing them and caring for them while they waited.  It seems now that nobody is watching or caring about the patients who are waiting in the waiting room.  Improving privacy for patients and safety for patients and staff has to somehow still allow for observation and care of patients who are waiting for emergency care.  Sometimes those patients need attention because their triage status can change.

If I had the opportunity, I would go to EMMC, sit down with their ER leadership and tell them exactly how I felt about my visit last night.  Maybe I will send a letter and offer to do just that.  If my brief encounter is any indication, my alma mater has not improved over the years, it has gotten worse. I am sad to be saying that.  I know some great nurses who work there, and I suspect that these things I have mentioned are systems problems…like work overload, understaffed, clogging up of the flow because no in patient  beds are available, no beds are available because there is no staff to accept them  and poor coordination of care.  As in most cases, it is a mess that needs to be fixed from the top down.   My letter will go out to the EMMC Chief Nursing Officer tomorrow……

Whew. This past week has been awesome.  I have been part of two dynamic and very inspiring meetings.  What have I learned?

1. Patient engagement is not an option, it is a necessity. Patients who partner with their caregivers are safer and they have better healthcare outcomes.

2. Don’t just invite me to a an engaged patient, expect me to be one. For patients who have difficulties with that, we need to offer help and gentle guidance.

3. We are all subjects of direct to patient marketing, for medicines, medical devices, hospitals services, and providers. Beware of the pretty pictures and inspirational and misleading messages of medical advertising. It is the goal of the advertiser to get you…a patient, in their grasp. If you pee, breath, eat and sleep, you are a target. Unsuspecting patients/consumers may find themselves taking a medicine or getting a procedure that could cause them harm.

4. Healthcare pricing is out of control and random, and NOBODY really knows the cost of care. It’s time they found out, so consumers can price AND quality compare and make informed choices.

5. “They” think we don’t understand. They being the provider. In their eyes, we can’t comprehend data, the complexities of our bodies, costs, etc. Dropping the paternalistic attitude will go a long way to partnering with patients.

6. There are a lot of well meaning and dedicated patient advocates from all branches of healthcare. Doctors, researchers, pharma employees, Federal health officers, academia, and Hospital systems, etc. But none are more passionate than patients and those who bring the patient’s voice to the table. Patients are the greatest untapped source of healthcare information and guidance. In both of my recent meetings, I used my voice and so did many other passionate generous patients.

7. In a room where patient engagement is being discussed, be sure there is a big representation of patients. Be assured that we will offer valuable information and advice.

8. Informed consent must be just that. No secrets. Use of patient engagement tools, like videos and brochures, and face to face detailed conversations to provide the information needed about recommendations. Patients…do not sign on that line until all of your questions and options have been discussed.

9. Even doctors are fearful of speaking up in the Hospital setting when their family member is in jeopardy. When your loved one is in demise, in the hospital, and nobody is paying attention, YOU RAISE a RUCKUS! In that place and time, nobody is more important than your loved one. Hurting feelings shouldn’t even enter your mind. (The Raise a Ruckus quote came from an esteemed colleague in Patient Safety)

10. Pay attention to the new Choosing Wisely Campaign. Consumers have been getting unnecessary tests, that lead to unnecessary procedures and medicines, that can lead to harm and even death….for a very long time. Consumer Reports in collaboration with the American Board of Internal Medicine is leading a campaign to stop over treatment and overuse of diagnostics that have little or no value in your care and that may lead to harm.

In the past 6 days, I have met some of the most inspiring and pro active patient advocates in this country. I have also learned that many of my ideas and thoughts do matter, and I have used my voice, I hope effectively, in meetings with these people. There is a lot of passion and courage in those meetings. We “patients” are courageous, but so are the representatives of the healthcare industry. If they didn’t care or weren’t prepared to engage, and make meaningful changes, they would not have been in the room. There is a definite shift, and it is good. Everybody gains in the rich conversations between patients and providers, in these meetings. If that is reflected in relationships between providers and patients behind closed doors, one patient at a time,  then all of us have made a difference.

Since April 2012, I have met monthly with other healthcare consumers as part of the Consumer Advisory Council of the Maine Quality Counts organization (MQC CAC).

http://www.mainequalitycounts.org/page/895/who-we-are

In 2009, I was the lone healthcare consumer representative on the Maine Quality Forum Multi Drug Resistant Organism Metrics (MQF MDRO) committee. I was the only uncompensated volunteer. Other members were infection control nurses from Maine Hospitals, an attorney from the Maine Hospital Association, representatives from the Maine Health Data organization and a couple of epidemiologists.   I was there because my father died of hospital acquired MRSA and because of my passion to do stop MRSA infections in Hospitals. My goals were very straight forward and simple.   The committee worked on the legislative rulemaking for our new law to screen all high risk patients in Maine for MRSA.  I had already spent months working with my State representative, other stalwart supporters and MRSA victims to get that law passed.  The monthly  MQF meetings  were brutal.  Without the skilled mediation of our noble physician leader Dr Josh Cutler, the meetings would have been dominated by one physician, who challenged almost everything I said.  In our first meeting, he said the new law was “irrelevant” and that was how we started.    Back then Patients and/or healthcare consumers were rarely represented on healthcare committees and their opinions were generally disregarded.  There was a prevailing attitude that they were doing us a favor.    Suffice to say that healthcare committees were not accustomed to having an educated and  assertive consumer like me in their midst in 2009.  I disrupted their business as usual when I doggedly pursued better outcomes for patients.  MRSA infections certainly should never be accepted as “part of doing Hospital business”.  I remember sitting in those meetings in 2009 and feeling my face grow red and the pressure behind my ears.     I struggled to stay respectful and polite, but I never succumbed to the dominating and paternalistic behavior I was confronted with.   When I left those meetings, I was exhausted and so frustrated.  We never came to consensus.  When we “finished” our work in that  MQF committee, it was far from finished. We had not completed the work of MRSA prevention in Maine  Hospitals, and it still has not been completed.  Because the MDRO metrics  committee was shut down, my consumer “position” was eliminated and I was effectively and efficiently removed from the work.  I have repeatedly expressed an interest (to the powers that be and through the State and  Federal CDC ) in participating in the work on Hospital Acquired Infections in Maine with the Maine Infection Prevention Collaborative, but those requests have not been answered. I often wonder if there is a powerful patient’s voice in those meetings anymore. I also wonder if we have really moved beyond the perception that healthcare consumers are token representatives in healthcare committees.

When I was invited to be part of the MQC CAC my skepticism was well founded…..BUT,  these meetings are a complete turn around from the Maine Quality Forum MDRO metrics committee meetings.   I sit with other Mainers every month who are all working toward the same goals, but from many different organizational perspectives. We are all seeking safer, better, integrated and accessible  healthcare for all Mainers.  Staff of the MQC organization facilitate every meeting, and they do it with great skill, discipline and organization.   Each of the consumers on this council  was recommended by a consumer organization. I was recommended by the Maine People’s Alliance.  Others represent the  Area Agencies on Aging, the AARP, National Alliance of Mental Illness, Univeristy of Maine, NAACP, Deaf Community, The Homeless,  etc.  Each of us have already accomplished great things in our chosen advocacy work and together we are unstoppable.  Our group is making huge accomplishments for Maine patients, and we are giving them a voice!  We are all respectful equals and there are no tokens in this group.    Together we are strong, proactive and progressive.    The combined experiences and accomplishments of the healthcare consumers in our group are unmatchable.  Some of us have begun to share our work and our accomplishments from outside of the MQC circle, with each other inside the MQC circle.   How can it be that I have become part of this wonderful group of generous and brilliant Maine healthcare consumers?  Most  Maine patients will likely never know who we are, but there is no doubt in my mind that they will all benefit from our work.

It is different for me now.  My earlier days of advocacy and activism were more contentious, a struggle and very challenging.  I left meetings exhausted, angry and frustrated.  Now I leave  meetings exhilarated and inspired.   I contribute and share much of what I have learned during my 4 years of activism and advocacy to this group, and so do the others.  This group is a gift and a miracle in my work and my life.