Seattle Children's Hospital - Parents Network

Security Issues at Children's: I Hate To Say "I Told You So"

2006-06-23T19:21:00.000-07:00

It's this simple. Note what happened in January 2006:

Apparently disturbed that a hard copy of this blog was found lying around somewhere in the Hospital, they wasted no time in dispatching Mr. Jim Sawyer, Director of Security and Transportation, to find me and ask for “2 minutes of my time”.

Point: The Hospital sent the top security executive to my daughter's room at 7am to discuss this blog.

And then note what happened today, according to the Seattle P-I:

Her son, Riley Rogers, is suffering from an illness and needs state-ordered emergency medical care. Authorities believe she took him from Children's Hospital and Regional Medical Center in Seattle. Dr. Richard Molteni, medical direct (SIC) at Children's Hospital and Regional Medical Center, said that in light of the custody battle over Riley, hospital staff watched the baby's room more closely than usual. Staff checked on Riley at 4:30 a.m. and again at 5:30 a.m. on Thursday. Hospital officials believe Carlsen carried Riley out of the hospital around 6 a.m. Thursday in a small bag after telling staff she was going for coffee.

Point: Apparently the Director of Security, who should have been aware of this imminent security problem, was less attentive to this critical issue than he was the appearance of a printout of this blog.

Parents, how many more incidents like this will it take until we collectively require a top management change at our children's hospital? Where is the CEO, Tom Hansen, in this crisis - out fundraising for his research? Hopefully he is researching security methods to prevent children from being abducted from this hospital and reallocating his Security Director's time from concerns about blogs to concerns about kidnapping.

Mr. Moore, meet Hunter. Hunter, Mr. Moore.

2006-04-17T19:27:00.000-07:00

Easter, it is a season of miracles. An email comes, out of nowhere:

"We have been approached by a woman who is working with Michael Moore on his upcoming documentary concerning our health care system...And we think your story will be so compelling that the subject will at least be mentioned in this film...The people working on the film are looking for people who are still dealing with the health care system and want to follow you through some of the things you are dealing with, as they are happening."

Go, Hunter.

Sicko

2006-03-18T11:32:00.000-08:00

Sicko is the title of Michael Moore's next movie. You remember Michael Moore - his many films include "Roger & Me" in 1989 about General Motors, "Bowling for Columbine" which won an Oscar in 2003, and then "Fahrenheit 9/11" in 2004 about the Bush administration's reaction to 9/11.

He posted a letter on his website last month headlined "Send me your health-care horror stories." A few excerpts:

"How would you like to be in my next movie? I know you've probably heard I'm making a documentary about the health care industry..."

"Ok, here's your chance. As you can imagine, we've got the goods on these bastards. All we need now is to put a few of you in the movie and let the world see what the greatest country ever in the history of the universe does to its own people, simply because they have the misfortune of getting sick. Because getting sick, unless you are rich, is a crime – a crime for which you must pay, sometimes with your own life. "

"I am looking for a few heroes with a conscience. I know you are out there."

You can send your story to him at michael@michaelmoore.com . It will be interesting to see which stories he selects for his movie. Any hospital CEO who's seen "Roger & Me" will be hoping it's not any of his patients in the movie.

Do Blogs Make a Difference?

2006-03-17T22:22:00.000-08:00

"If there must be trouble, let it be in my day, that my child may have peace. " Thomas Paine

A lot of people probably think this blog is nothing more than a father venting about the series of errors committed regarding his child's healthcare. But be aware that this blog led to Consumers Union, publisher of Consumer Reports, developing interest in Hunter's case. That, in turn, led to Rep. Tom Campbell requesting that I testify before the State Senate Committee. That led to coverage by The Olympian newspaper. And all of those things are now a permanent part of the collective knowledge online, available 24 hours a day, worldwide.

Similarly, this week I wrote in my other blog an item about executive pay, which was seen by Bloomberg, whose reporter wrote an article on a completely different executive pay story, which was then picked up by the Los Angeles Times and dozens of other national publications and read by millions of people this week. Those comments are now a permanent part of the collective knowledge online, available 24 hours a day, worldwide.

Traditional media, politicians, and executives are realizing that power is returning to the citizens, just like the Founding Fathers intended. Those sitting in cozy offices thinking that their connections, political contributions, lobbying activities and wealthy fundraising friends are going to insulate them from these annoying little blogs - well, they're in for a very big surprise.

She's Baa-aack

2006-03-17T22:14:00.000-08:00

I forgot to mention that Hunter was back in Seattle Children's Hospital this week as an inpatient - twice. She still has not recovered from all of the damage suffered from the series of infections she had from her last visit there. She had surgery today to implant a feeding tube as she is still unable to eat, still vomits almost hourly, and has gained no weight. She went in Monday but couldn't be scheduled for surgery until Friday, so came home Wednesday and was readmitted Friday morning.

You can imagine our apprehension as the last time she was in for a 3-day stay she became the 57-day infection case. I think everyone concerned is hoping that doesn't happen again but my wife is still onsite 24/7 to make sure people wash their hands, use Purell, don't re-use things dropped on the floor, administer the correct dose of the correct medications on time - you know, all those things that we parents are required to do as a part of our job description because some employees haven't read theirs nor have their supervisors.

The Fight Continues

2006-03-17T22:04:00.000-08:00

As you probably know, the infection reporting bill did not make it out of the Legislature this year. We'll try again next year. No doubt the hospital industry will continue spending money on lobbying the legislature to vote down a requirement to report their infection rate. It seems to me that money could be spent on improving infection control in the hospital and then they wouldn't be concerned about reporting their infection rate. I wonder how hospitals justify diverting money to special interest lobbyists when that money should be spent on the children? I thought the concept was to "eliminate disease in children" not "eliminate evidence of disease hospitals cause in children." Maybe I misinterpreted.

They're clever about it too - hospitals wouldn't want a paper trail from hospital to lobbyist, so their money goes to industry associations that then hire the lobbyists. Even then, numerous hospitals did have staff members present to testify in Olympia against the infection reporting bill. Gee, if they are so cost-pressured and short-staffed, how can they afford to employ a person who hangs out all day at the Capitol? I'd like to know how the children benefitted from that.

You can see Hunter's personal testimonial at:

http://www.consumersunion.org/campaigns/stophospitalinfections/learn.html

We are fortunate to have so many people helping her fight for her rights until she can speak up for herself.

Hunter in the Headlines

2006-02-21T09:50:00.000-08:00

Today's front page of The Olympian (at least the online front page) features a story about the infection control bill and our testimony yesterday.

Hunter's name is not actually mentioned, referring only to my 15-month-old daughter. I suspect there is a rule or policy against citing a minor's name.

And Children's Hospital is not actually mentioned, referring only to "a Seattle hospital." I suspect there is hesitancy among wealthy newspaper owners to cite by name hospitals with wealthy donors based on a single person's public testimony to a Senate Committee. Who knows?

I promised that Hunter's ordeal at Children's Hospital would become front page news, and it has. This is only the beginning. Little feats of little feet.

How Lucky Can You Get - A Major Media Day and an Apology

2006-02-20T22:45:00.000-08:00

Wow! What are the odds that the day Hunter is invited to testify before the Senate Health and Long-Term Care Committee is the same day that Governor Gregoire shows up to announce the deal reached on medical malpractice reform. It was pretty cool to sit in the same spot she had a few hours earlier and talk to the same group of Senators. A lot of the media stayed around and were still there for our testimony which is going to result in some coverage of Hunter's story. Hunter didn't spit-up on my shirt all day and she got to meet several of the Senators afterwards.
You can hear my testimony at http://www.tvw.org/MediaPlayer/Archived/WME.cfm?EVNum=2006020206&TYPE=A beginning at 3:34:00.

But my favorite part of the day was when Jeanette Harris - representing the Association for Professionals in Infection Control and Epidemiology - apologized to our family during her testimony to the Senate on behalf of other hospitals in the State of Washington for the response we received from the Children's Hospital administrator, Ruth. Ruth had said that if we didn't like the problems that Children's Hospital had with infection control we should move to another part of the country and use a different Children's hospital. Jeanette indicated she thought Ruth's response was "criminal." Apparently others agree that this arrogance has no place in the healthcare system of the State of Washington (hopefully not in any other part of the country either).

Then, when we got back home, I had an email from a Children's Hospital parent who read this blog and was "shocked" to hear what we had gone through. I can tell you that after today, there are a lot of people across our State who share that shock - legislators, lobbyists, journalists, and citizens.

It was a good day because we again took a horrorific experience and used it to help improve healthcare for all. One small step for Hunter, one giant leap...well maybe just one small step for healthcare quality. But the giants are learning that even little tiny feet can trip them up.

Hunter Gets an Audience with the Politicians

2006-02-17T12:03:00.000-08:00

Good News! I have been invited to testify before the Senate Health and Long-Term Care Committee next Monday to tell Hunter's story as a reason that hospitals must be held accountable for infection control. Disclosure is a key solution to such accountability.

Rep. Tom Campbell's bill (HB 1015) will require reporting of hospital-acquired infections in Washington. Despite opposition from the powerful hospital lobby, Rep. Campbell was able to get the support he needed to pass the Washington House of Representatives. Now the Senate Health and Long-Term Care Committee will hold a public hearing next Monday, February 20, at 3:30 PM. It is crucial that this bill get the support of this committee and some members of the committee may be hostile to this important legislation.

I will be there to tell Hunter's story, and the story of Children's Hospital, to emphasize the destructive impact of hospital-acquired infections on patients and their families. I would like to take Hunter along but will probably just bring a photo of her scarred head resulting from all of the additional brain surgeries she required due to the infections. That picture is worth at least a thousand words.

Children's CEO Seeks More Money and Fame; Citizens Seek Infection Control

2006-02-16T20:37:00.000-08:00

"The best doctors, the best nurses, the best everybody, want to be in a hospital that's on the cutting edge," he says. And while it may take 20 years for a research project to bear fruit, "you get that best doctor — that's tomorrow." So says CEO Tom Hansen in the Seattle Times on February 6. What's missing is an answer to when the Hospital will start ensuring that those "best" doctors and nurses start following the Hospital's infection control procedures.

"Children's Hospital and Regional Medical Center consistently ranks high among the country's children's hospitals. It deserves this community's gratitude and support." says the editorial in the Seattle Times on February 6. It's much easier to "rank high" when you are able to hide your infection rate.

"Rep. Tom Campbell's bill (HB 1015) will require reporting of hospital-acquired infections in Washington. Despite opposition from the powerful hospital lobby, Rep. Campbell was able to get the support he needed to pass the Washington House of Representatives. Now the Senate Health and Long-Term Care Committee will hold a public hearing next Monday, February 20, at 3:30 PM. It is crucial that this bill get the support of this committee and some members of the committee may be hostile to this important legislation. " says Consumers Union, the publishers of Consumer Reports.

Tom Hansen continues to seek money, power, and fame and continues to disregard internal quality control. How do I know this? Because when I asked what had been done since my daughter Hunter's previous surgery to avoid infection during her next surgery, the head of Infection Control said, and this is a direct quote: "Nothing, really." That, and the fact that I requested 15 minutes of Tom's time to discuss the matter and he refused

But they sure have been busy raising funds to "eliminate disease in children." Maybe they should start by "eliminating infections in Children's" because that, in this Hospital alone, is costing our society millions of dollars per year - which could go a long way toward funding Tom's research ambitions if it wasn't coming out of our pockets otherwise.

Fortunately, Consumers Union is going to be publicizing Hunter's story, nationwide. I knew this little girl would change the world, and I think we're all going to be surprised at how much change she causes, and how quickly. I suspect Tom will continue to ignore this and spend his time raising funds to build his new research center. Tom has never met Hunter, because he apparently doesn't bother to come down to visit patients. But he has no idea how little Hunter is about to rock his world.

Still Waiting...

2006-02-01T00:22:00.000-08:00

On January 26 I was finally contacted by Linda Allen, the Assistant to the Vice President and Medical Director, of Children's Hospital and Regional Medical Center, regarding my demand to meet with the management team regarding the latest medical error on my daughter, Hunter. She informed me that she is "attempting to coordinate schedules of two very busy surgeons and the Vice President and Medical Director". We're apparently looking at a date in late February.

I am eager to help the Very Busy Surgeons, and the Vice President and Medical Director, understand what it is like to be "very busy" - supervising nurses and doctors 24 hours a day 7 days a week in the hospital room to directly prevent medical errors while parenting two other children and working a full-time job. It seems to me that if they were very busy managing their surgeons we wouldn't need a meeting that is so difficult to schedule as a result of their being very busy. Do I suddenly sound like Lewis Carroll? Or do they? (Hint: Lewis Carroll is the author of Alice's Adventures in Wonderland, which is where I often find myself with my meetings with Childrens's staff: "A word means whatever I want it to mean....". But I digress.)

The message to parents is that you need to challenge what may be conveyed as a "misunderstanding" and force accountability. As parents, that is our job with respect to our children's healthcare. When these Very Busy Surgeons finally run out of stalling tactics and meet with this Very Busy Father and Very Busy Mother, we will learn what the excuse is for the latest medical error. Stay tuned.

To me, the word "accountability" means only one thing, regardless of that they want it to mean. I think they know that about me, as busy as they may be, which at least partially explains the delay, doesn't it?

Welcome Home, Hunter

2006-01-22T23:52:00.001-08:00

Hunter came home Saturday, after 58 days at Children's - all of which were due to infections from being in the Hospital. We thank all of the wonderful nurses who helped Hunter heal, the doctors who did their work, and the supporting staff. Hunter, and her twin sister Brighton, will continue to be regulars at CHRMC for follow-up visits - and we hope those are their only reasons for returning. They will be in and out of Children's for the next 16 and 1/2 years regardless of the specific reason.

While Hunter has left the building, her impact on the Hospital has not. The investigation by the Special Assault Unit of the Seattle Police Department is still underway. I am meeting with the Chief Medical Officer, Surgery-in-Chief, and Head of Neurosurgery to discuss the foul-up on her latest surgery (for which her surgeon apologized in writing but still has avoided actually speaking to me) - which stems from the fundamental problem that some surgeons don't feel the need to fully prepare prior to performing a procedure. There are weeks and months of change still coming from Hunter's most recent stay. As the guy on the TV commercial says, "I guarantee it."

As I've said throughout this blog, and will continue to, Hunter and Brighton (and their brother Marshall) are just the most immediate reason I am motivated to force improvement at Children's. All the parents reading this have equally strong motivations but may not have the knowledge or lack of fear of the healthcare system that my wife and I have. I am motivated to help them too (and in small ways already have though they'll never know it). Once we create a similar level of motivation among the management team of Children's, including CEO Tom Hansen, then we will be at the beginning of a real change process.

So, Hunter says "goodbye" to all the wonderful nurses and doctors she had over the past two months and reminds the CHRMC management team to say "hello" to an intense level of change that is going to be occurring at the Hospital. Then, we hope that change will spread to other Children's hospitals nationwide. Who says a 1-year old girl can't change the world?

Margaret Mead is attributed with the quote "Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." I hope that the CHRMC management team isn't in such denial that they doubt that a small group of thoughtful, committed people who are highly motivated to ensure the survival and thriving of their children can and will change the broken system and culture at CHRMC.

Hey, Where Did Everybody Go?

2006-01-18T01:48:00.000-08:00

This is very odd. One minute we were getting top management attention (when they found a printout of this blog lying around the hospital) and only days later top management was nowhere to be found (when the neurosurgeon installed the wrong shunts in my daughter's brain). Now, I understand the need to prioritize and I can't expect anyone to actually respond to my concern about a brain surgery error. We'll just continue to let Hunter lay in her bed and scream and vomit until someone has some spare time to look into the matter.

This blog entry is necessarily short today because I've had to spend the majority of my day trying to track down members of management at Seattle Children's Hospital to get some answers. I can tell you this Hospital is truly a center of excellence when it comes to avoidance of accountability with patients and their parents. I think they might be learning, though, that some parents are centers of excellence in forcing such accountability, and that excellence is only beginning.

All of your children in the Hospital are in my prayers. There is ultimate accountability.

Seattle Children’s Hospital Management Takes Action! (Don’t You DARE Print This Blog!)

2006-01-06T20:16:00.000-08:00

I was thrilled to see our Hospital management take swift and decisive action this morning. Apparently disturbed that a hard copy of this blog was found lying around somewhere in the Hospital, they wasted no time in dispatching Mr. Jim Sawyer, Director of Security and Transportation, to find me and ask for “2 minutes of my time”. Thank goodness the senior management of the Hospital is getting focused on these serious patient care quality issues! I can’t imagine the damage being done by a printout of a web page! I did have to remind Mr. Sawyer that it was a printout of a web page, not a “pamphlet”, and that it could be printed by anyone from any computer anywhere in the world, including any PC in the hospital. How puzzling.

I’m glad to know that this practice of immediate response by the “top guy” is in effect. I now assume that I can expect similar attention to more trivial issues such as the chronic lack of attention to infection control and my daughter’s fourth (or is it fifth?) consecutive infection and sixth (or is it seventh?) brain surgery, all in the past six weeks. I hope that I’ll get visits from the other top guys, and gals, in the coming days now that we have addressed the serious issue of web page printouts and can finally turn our attention to patient care, unless there is some other pressing priority in the Hospital. I did hear that someone may have left some old newspapers on a table in the Sound Café and I hope Mr. Sawyer has jumped on that crisis, too.

In the meantime, I look forward to those top guys' visits to my daughter's hospital room. Dr. Hansen, Dr. Molteni, Ms. Heath, you know her room number.

If You Don't Like Children's Hospital's Patient Care Quality Then Just Move to Another State

2005-12-29T23:43:00.000-08:00

Believe it or not, that was the message to me from the top administrative official today. Her name is Ruth. Rather than focusing on improving patient quality at Children's, Ruth believes parents should uproot their family, change jobs and schools, and incur moving expense instead. Please call Tom Hansen, the CEO of Children's, and voice your opinion on this. His assistant, Susan, can be reached at 206-987-2001.

Seattle Children's Hospital Under Investigation by Department of Health, Seattle Police Department

2005-12-29T12:31:00.000-08:00

The Washington State Department of Health and Seattle Police Department's Child Abuse Unit have confirmed they are investigating accusations of unlawful imprisonment and child abuse stemming from an incident with my daughter on Tuesday, December 27.

Any parents who believe they have been denied rightful access to their child during medical procedures and/or their inpatient stay at Children's or who believe their child has not received appropriate care are urged to contact me. Or, you may contact the reporter at the Seattle Post-Intelligencer covering this story: Angela Galloway at 206-448-8333.

We are hopeful that the treatment that Hunter received will never again be repeated once the criminal and regulatory investigations and remedies are complete. My goal is to ensure that the inappropriate actions of a few are not allowed to disrupt the excellent work of the doctors, nurses, and other providers at this important institution that is such a critical resource for our community and its children.

Notice to Hospital CEOs: Cut Back on Patient Care, Go to Jail

2005-12-13T17:50:00.000-08:00

Finally, insufficient healthcare provided to vulnerable patients has the attention of Federal prosecuting attorneys. Thank you, Santa Claus - that was at the top of my list.

A healthcare organization and its Chief Executive Officer have been indicted on Federal conspiracy and fraud charges connected with the to lack of staffing at these facilities. If convicted, these charges carry maximum penalties of five years in prison, per count, and/or fines.

According to the indictment, between January 1998 and June 2001, Robert Wachter was the Chief Executive Officer of American Healthcare Management (AHM), and determined the budget, the result of which was staffing limitations and insufficient nursing staff at their facilities.

Additionally, the indictment alleges that during this time, Wachter and AHM continued to bill Medicare and Medicaid for services that they knew were inadequate or not performed at all. The purpose of the conspiracy as alleged in the indictment was for the defendants to enrich themselves by obtaining and retaining reimbursement for these inadequate services and to conceal the actual conditions and the true nature of care provided from Federal and State governments.

“Today’s indictment demonstrates this office’s continuing commitment to fight health care fraud, especially the kind that hurts our most vulnerable citizens. We will continue to use all of the tools that are available to ensure that when … management accepts the obligation of caring for … beneficiaries, that those obligations are met,” said the US Attorney.

The US Attorney commended the work performed on this case by the Office of Investigation for the Inspector General of the United States Department of Health and Human Services, the Federal Bureau of Investigation, the Medicaid Fraud Control Unit and the Missouri Department of Health and Senior Services. Assistant United States Attorneys Dorothy McMurtry and Howard Marcus are handling the case for the U.S. Attorney’s Office.

I hope that the next phase of action for the US Attorneys pursues facilities that not only provide an insufficient quantity of care but insufficient quality. We will then be on track to fix the underlying issue of medical errors, soaring healthcare costs, and whining about malpractice insurance premiums. I appreciate the US Government providing the investigators, prosecutors, and courts to finally fix this problem.

Parents: “Advocate” Means You are the CEO in a Turnaround Situation

2005-12-10T16:32:00.000-08:00

In the business world, there are different kinds of CEOs: Entrepreneur CEOs are good are creating something from nothing, starting a company from scratch, and building it into an organization with people, products, and profit. But one who creates something that might not have otherwise been is not always trained to manage it going forward. In fact, most CEOs are good only at running stable, steady-state organizations that someone else created and that are not going through serious crisis and bring in specialists as needed – this is analogous to what your family pediatrician’s job is.

Then there are turnaround CEOs – those individuals brought into save a bankrupt airline, return a near-failing auto company to market success, or rejuvenate a deteriorating firm before it’s too late. Figure out what’s wrong, take control, make immediate and major changes to fix the root problems, garner a quick success, and then move on and let someone else manage it. Unfortunately, there is no medical equivalent to this necessary role. The US healthcare system is not set up that way.

As a parent with a child in the Hospital, there are two things you need to realize.

One, you are the CEO of your child’s medical care – not an advocate, or advisor, or team member. You are the boss. You don’t hold an MD degree, or aren’t an RN? That’s OK, many CEOs have no training or background in the field of the company they are running. (More on that in the next blog entry.)

Two, you are in a crisis turnaround situation. No matter how “routine” or “elective” the reason your child is in the hospital, once they are here they are in a potentially life-threatening situation – whether from the ailment that brought them here or from medical errors, oversights, allergic reactions, anesthesia, and infections.

As CEO, you have responsibility for the same things a CEO of an airline or bank (or hospital) should be doing: defining how the team is organized, who is on the team, what the performance standards are for the team, determining when someone should be removed from the team for poor performance, and so forth. What? You didn’t know you had the responsibility, let alone the authority, for those things? Well, you do. Hospital-based care for children is a far too serious business to allow us parents to merely think of ourselves as the customer or consumer.

If you want your child to survive this experience and thrive afterward, if they are already an inpatient, and you haven’t started doing your CEO job, then you’re already behind. Get moving. Hopefully you’re reading this prior to admission, so you can hit the ground running in your new job.

The next few entries to this blog will give you detailed steps for succeeding as CEO of your child’s turnaround situation. Stay tuned.

Note: Remember this is a blog, so you’ll need to read from the bottom up to read the series in the intended order.

Seattle Children's Hospital Will Need to Reduce Patient Care Says CEO Tom Hansen

2005-12-08T21:54:00.000-08:00

Seemingly eager to continue to shift Seattle Children's priorities away from quality patient care toward his personal research interests, CEO Tom Hansen was quoted in the Seattle Times on December 5:

"Cuts in Medicaid impact our choices and what we can do for everybody," said Hansen, noting that Children's serves four states. "Loss of income could mean reducing services, leading to longer waiting times for major surgeries. And it means that in ranking spending, investments such as those for new diagnostic procedures are impacted," Hansen said.

Let’s remember that in his Seattle Times editorial on November 18 he scarcely mentioned patient care, instead emphasizing his interest in more research. And now that the government may reduce payments to Seattle Children's Hospital, where are the cuts coming from? Patient care. I am appalled that he threatens our children with longer wait times for major surgeries as a political tactic to ensure funding for the Hospital.

He of course does not mention that another potential source of funds would be to reduce expenditures on his new research focus to ensure that our children actually get the care they need today.

If you as a parent are, or are not, outraged by this management attitude at Seattle Children's Hospital, please contact me. Patient care is deteriorating and this is how the CEO is responding -- Give me money or I'll reduce patient care even more.

Parents: Ask for a Care Meeting

2005-12-07T20:42:00.000-08:00

We'd like to think that our children’s medical care is being executed as well as one of the notable Seattle Seahawks offensive plays in this week's game. Unfortunately, the care more often resembles a soccer game of 4-year olds (have you seen the "blob"?). We'd like to think that before the "play" the quarterback has huddled the players and assigned specific roles, defined alternatives that may be communicated through audibles, and maybe passed along commands from the coach via the QB's in-helmet headset. This portrays an image of action, up-to-the-minute responsiveness, full communication, and most importantly teamwork. We'd also like to think that, like the football team, after the game the medical team has gathered to watch game films for hours to understand where they were weak and how they can improve, individually and collectively, in the next game.

This is not what happens with our children’s healthcare. First of all, there is no "team." Instead, players often gather on the field at the last minute, sometimes not sure who the other team is, not having seen the playbook, and not even knowing the other players. The ball is in play, and the scrambling begins. When the play fails, or God forbid the game is lost, this sets up the conditions for finger-pointing. I couldn't catch the pass, it was a bad throw. I couldn't run through the line, there was bad blocking. I don't know what happened; I just never got the ball. Nobody showed me where the goal line was. I didn't know. It's not my fault - it's just how the system is. And they move on to the next patient. Oh well.

As a parent who has experienced the horrors of this, I can tell you that there is only one solution: be the quarterback. This is not a popular action and it is likely that no one at the Hospital will suggest it to you. Doctors, nurses, and administrators may all think they are the quarterback or, more likely, that they are soccer stars that need no quarterback. But they do.

There is no process at Children's Hospital - or at most hospitals - for calling the team together for a team huddle. It will only happen if you do it. You may find a lack of interest in such a meeting, in which case you will have to start aggressively pushing on the system (more on that in a future blog entry). You, Dad and Mom, are the quarterback. You, or your insurance, are paying for this. You are the customer. Your child's life is at stake. You have the right to call the shots.

Quarterbacks aren't the most skilled at running, catching passes, piercing a line of 300-pound defensive players, or kicking a field goal. Their job is to pull the team together to execute the play out of a playbook already defined for them. As parents, this is our job. The Hospital likes to call it "advocacy" which is a wimpy way of saying that if we don't do it, it will not get done.

Do it. Schedule a care meeting and mandate attendance by ALL caregivers involved with your child. If anyone no-shows for any reason other than being paged for a life-threatening situation, report it in writing. We cannot afford to have the equivalent of excited 4-year olds madly chasing a soccer ball around the field not understanding that the objective is to score a goal. Our children’s health, and lives, are more important than that. And despite the foregoing analogy, this is NOT a game.

If you need help, Tom Hansen, the new CEO of Children's Hospital, would be the person to contact as he is ultimately responsible for this. His assistant Susan can be reached at 206-987-2001.

To All Parents: Ask!

2005-12-01T02:05:00.000-08:00

Whenever a physician approaches your child for the first time, be sure to ask him or her if he or she has read your child’s chart (they may say “yes” even if they haven’t) and ask them approximately how long they spent reviewing the chart. This second question is more difficult for them to dodge, and their speech and body language will convey whether they are telling the truth. You might probe further and ask “What is your professional opinion of how Johnnie’s most recent procedure will impact your work today?”

Why is this important? In my experience, doctors at Seattle Children's Hospital walk in at least half the time without having even opened the patient’s chart. This is somewhat easier for me to diagnose because my daughter’s name – Hunter – leads to the assumption she is a boy and they will refer to her as “him.” Typically the top page in the chart, however, is a color-coded (pink or blue) page with big boldface letters that say “BOY” or “GIRL”. I have had several physicians admit after these queries that they had not opened the chart at all, yet were already practicing medicine on my daughter.

While gender is arguably not a relevant factor for some procedures, parents not trained in medicine are not in a position to know when it is or is not an important piece of information and should demand that the physician know this basic piece of data about the child. But more importantly we should demand that physicians have gone beyond gender determination and have read enough of the patient history to competently perform the procedure.

I need your help to fix this. Email me at fred@fredwhittlesey.com. Thank you!

Parent Alert: Children’s Hospital's Not-So-Secret Secret

2005-12-01T01:00:00.000-08:00

I have to say I was quite amazed to find this academic journal article as I was doing research to help us form our Parents Network effort.

Source: American Academy of Pediatrics
Article: Use of Incident Reports by Physicians and Nurses to Document Medical Errors in Pediatric Patients
Location of Research: Children’s Hospital and Regional Medical Center, Seattle
Date: September 2004

Researchers' Conclusions: The majority of medical errors committed by physicians and nurses during the care of pediatric patients at Seattle Children’s Hospitals are never reported. Fewer than half in the study report 80% or more of the errors they make; one third of the respondents say they report fewer than 20% of the errors.

Implications: In 2001 (year of the study) 2,506 incident reports were filed at CHRMC. This is equivalent to 11.4 incidents per bed per year – roughly an incident per month in every bed in the hospital. If half of the incidents are unreported, the error rate at Children’s is equivalent to a significant medical error once every two weeks in every bed in the hospital. Statistically, if your child is an inpatient at Children’s for two weeks, a significant medical error was made and odds are that it was never reported by the healthcare professional and never reported to you. We have to wonder -- if those willing to participate in the study admit to not reporting errors...what about those that chose not to participate?

Message to all parents of children at Children's: Let's fix this! I need your help. Email me at fred@fredwhittlesey.com

The Provider Community Responds

2005-11-30T22:12:00.000-08:00

"Nice blog - I think it will serve children and their families very well. It's astounding how people seem to think the medical system is entirely trustworthy. Mistakes occur in all disciplines, but in medicine the consequences can be grave. I'm glad to hear that you are taking an active role in your daughter's health and well being. It is very admirable."

Don't Forget to Remind Children's Hospital Employees to Do Their Job Properly

2005-11-29T18:21:00.000-08:00

That sounds a bit cynical, doesn't it? Well, take a look at the April/May/June 2005 issue of "Family Highlights" published by CHRMC. In a section titled "What Familes Can Do to Prevent Medical Errors" the fifth bullet point instructs us, the parents, to "Ask health care workers who care for your child if they have washed their hands." For some reason this management task has been delegated to parents - and watch the huffy expressions on the Children's employees' faces when you do exactly what Family Highlights tells us to do.

As long as we've offended them already, at CHRMC management's direction, perhaps we should go further and ask more questions that should be in the purview of management. "Have you looked at the chart for this child?" "Do you know their medical history?" "Are you qualified to perform, and experienced in performing, the task before you?" "Did you administer all medications at the prescribed time today?" "Was the dosage correct on each medication?" "Was the medication adminstration recorded properly in the system?"

We can see that this list is endless, yet critical. But the first question - did you wash your hands? - is the one that is critical to preventing infections. And an infection is why Hunter was admitted to Children's on November 24, after having surgery here on November 10 and having her stitches removed on November 22, and why she'll likely be here until at least December 12. But it sounds like that was my fault because I did not, in fact, ask every single healthcare worker who was in surgery and subsequent care and procedures whether they washed their hands. I guess CHRMC management would give me a negative performance review for that oversight.

See http://www.seattlechildrens.org/home/pdf/family_highlights_spring05.pdf

The Patient Community Responds

2005-11-29T13:29:00.000-08:00

"I just wanted to let you know I understand to an extent what you are going through. I am a nanny for 3 year old twin boys, one of which has left heart syndrome. He had his final operation in san francisco just this month and after returning home he has been re-admitted... Recently the while changing his sheets his mom noticed sores all over his back.....why didn't the nurses think to check that out...it's really upsetting. So quality care is something that needs to be addressed. These kids need a voice and you are good people to seeing that they have one. Take care.."

CEO of Children’s Hospital Puts Personal Research Interests Above Patient Care Quality

2005-11-28T15:55:00.000-08:00

Tom Hansen, the new CEO of Children’s Hospital, in an editorial in the Seattle Times on November 18, 2005 reiterated his priorities for the institution: research, research, research. In the article, he uses the word research, and words meaning research, dozens of times yet doesn’t address the Hospital’s real mission until the last sentence - and devotes less space to patient care quality than to how many new jobs the research spending will create.

When I requested a 15-minute meeting with him to discuss my concern as a parent that quality care issues were not being addressed, he first stalled (through his assistant, of course) and then never responded again. He communicated effectively to me that receiving timely and accurate information on patient care is not a priority for him.

Call his office and express your concern by talking to Susan at 206-987-2001. Act now to emphasize to the new CEO that spending money on new research that never makes it to the patients is not why this Hospital exists. Note that in the final sentence of the editorial he points out the primary mission of Children’s Hospital: that children in our area always receive the highest-quality care available. At least he got that part right.

Here is the text of his editorial.

Ambitious expansion at Children's
By Tom Hansen
Special to The Times

Children's Hospital intends to eliminate all disease in children. It is so lofty a goal that it seems almost unrealistic.

But I truly believe that through strategic research investment, diseases such as cystic fibrosis, muscular dystrophy and sickle cell anemia will disappear in my lifetime — much as polio did during my parents' generation. I am confident we will discover new therapies for children with cancer and find new ways to prevent premature birth.

This is why Children's Hospital is undertaking a significant expansion of its research capabilities — research is the key to eliminating pediatric disease.
Of course, Children's alone cannot eliminate all pediatric disease. But, we are moving forward quickly as our response to a timeless question: "If not us, who? If not now, when?"

As Children's new president and chief executive officer, I am charged with leading the hospital and its research efforts in the next major step toward achieving a dream conceived years ago by Children's board of trustees and former CEO Treuman Katz. They understood that children are not just little adults and that the diseases that strike them need special attention. At Children's Hospital, we must, as we always have done, focus on the special needs of children.

Children's already has some of the nation's top medical researchers. Their presence will help us attract other top-caliber researchers to Seattle and add to an illustrious history of pediatric medical breakthroughs. To highlight just a few milestones:

• Dr. Bonnie Ramsey and Dr. Arnold Smith developed the improved aerosol methods to deliver antibiotics to treat lung infections in cystic fibrosis patients, significantly improving their life expectancy.

• Dr. Robert Hickman devised new ways to use the catheter that now bears his name. Used for nutrition, blood draws and delivery of chemotherapy, the Hickman Catheter eliminates the need for repeated needle sticks in children.

• Dr. Phillip Tarr described a mol-ecular technique to analyze the linkage between strains of E. coli bacteria responsible for hemolytic-uremic syndrome (HUS) in children who ingest tainted beef, the predominant cause of HUS.

• Dr. Dimitri Christakis provided the first evidence that early television exposure may be related to Attention Deficit Hyperactivity Disorder (ADHD). His nationally acclaimed study found that each hour of television watched per day at ages 1-3 increases the risk of attention problems such as ADHD by almost 10 percent by age 7.

We will continue to build our program in partnership with Seattle's other world-class research institutions, particularly the University of Washington and the Fred Hutchinson Cancer Research Center. The physicians who staff Children's are faculty members at UW. With "the Hutch," Children's and the UW formed the Seattle Cancer Care Alliance in 1998, speeding the delivery of new cancer treatments to patients throughout the world.

Since then, Children's has opened two new facilities dedicated to basic science and clinical research, and we plan to do much more.

My background in research development was a major reason I took the helm at Seattle Children's. During my tenure as CEO of the Children's Hospital in Columbus, Ohio, it grew to become the nation's ninth-ranked children's hospital in grant support from the National Institutes of Health.

Previously, I was on the medical staff of Columbus Children's while also serving as chair of the Department of Pediatrics at Ohio State University. Before that, I served in various research capacities at Baylor College of Medicine, including director of the Child Health Research Center and vice chairman for research in the Department of Pediatrics.

In the months ahead, I will work closely with Seattle Children's world-class faculty to develop an action plan that will focus on significantly expanding our research capabilities while continuing to push for excellence in patient care, education and advocacy.

I do mean a significant expansion of research: Children's will soon announce a phased program to acquire as much as 1 million square feet of additional research space outside our main Seattle campus. The best researchers demand the best facilities and we plan to offer them some of the finest facilities anywhere.

We would not undertake this effort if we were not certain it would be good for the children. Our research initiative will bring the best doctors to Seattle, resulting in improved patient care, access to cutting-edge technology, new and improved therapies, and landmark discoveries. Pediatric research also has direct implications for adults. Each year, more children reach adulthood with pediatric diseases like diabetes and congenital heart disease.

Expanding our research capability will also boost the local economy and increase the number of good jobs in our region. An economic-development rule of thumb estimates that every 300,000 square feet of research space roughly equals 1,000 jobs.

Research will play an increasingly important role at Children's Hospital and help us fulfill our primary mission: that children in our area always receive the highest-quality care available anywhere — regardless of their family's ability to pay. Eliminating pediatric disease is our ultimate goal.

Dr. Tom Hansen is the new president and CEO of Seattle-based Children's Hospital and Regional Medical Center. A specialist in neonatology, he plans to stay personally involved in researching cures for chronic lung disease in premature infants.

Tip of the Day for Parents

2005-11-27T22:54:00.000-08:00

Make sure the time and date setting on the monitors are the actual time and date. Today I discovered the monitor was set 40 minutes ahead of actual time – a difference clearly not a result of a daylight savings time change (one nurse’s theory) and just enough to make it impossible to trace cause and effect for, say, what happened during a nurse’s 30-minute meal break or in the event of a reaction to a new medication.

Tip: When your child is admitted, and again each day, verify the monitor has the correct time and date, located at the very top of the Agilent HR/Resp/SpO2 monitor in this format: 27 Nov 05 18:30.

Why is this important? If you need to trace cause-and-effect between a medication and a procedure, a level-of-attention concern, or any other issue you need the electronic record to match the manual entries of the doctors and nurses.

Today’s Outcome: After my intervention, nurses went room-to-room and reset all of the monitors on the floor to the correct time and date. Yet another example of how one parent’s attention to detail and intervention into the organization can improve medical care for all children.

OBSERVE – INTERVENE – REPORT

Today at Children's Hospital: Monitoring the Monitors

2005-11-27T22:48:00.000-08:00

Time of event: 17:40

Hunter (my 13-month old daughter, twin of Brighton) awakened crying and immediately began triggering both Resp and SpO2 alarms, dipping into the 60s on SpO2. No nursing response for 15 minutes. I didn’t need a nurse’s response because I could observe that these fluctuations were due to poor sensor readings. But without my bedside presence Hunter, at a minimum, would have lay crying for 15 minutes. Worst case, the alarm would have been real and she would not have been discovered for 10 or 15 minutes, enough to cause death or brain damage.

And where was the nurse? On her meal break, with the other nurses failing to cover her responsibilities and not responding to alarms.

Tip of the Day for Parents: If you must have gaps in your bedside presence, try to time them to minimize the risk of inattention. The highest risk times are nights and weekends and during nurse breaks. You may want to ask when your nurse will be taking his or her meal breaks and coordinate accordingly. Asking them this also will highlight that you are aware of the tendency for the ball to get dropped during these times.

Why is this important? Medical errors kill tens of thousands of people every year in hospitals and we’ll never know how many of these are due to chronic inattention by nursing staff. The only way to avoid this particular cause of problems is to personally intervene and report incidents that occur as a result.

OBSERVE - INTERVENE - REPORT

Welcome to the Seattle Children's Hospital Parents Network

2005-11-26T23:14:00.000-08:00

As a father of former, current, and future patients of Seattle Children's Hospital, it is critically important to me that the Hospital provide high quality care. The quality standard must be comparable to standards that we have come to expect in other organizations we deal with, not the current inadequate standards deemed acceptable in the healthcare industry.

If the medical error rate my family has experienced at Seattle Children's was something you had experienced with your bank statement, credit card statement, meal order at a restaurant, quality of your new car, or any other product or service...well, you would have demanded a correction or taken our business elsewhere. As parents at Seattle Children's, we will not always be as aware of the quality problems as we would be with our bank, our restaurant or our car, yet these problems may be occurring on a regular basis with our children. And we don't have the luxury of shopping for an alternative, nor does Seattle Children's have the luxury of deciding whether to fix the problem. Both parties are in a mandatory situation.

I invite you to join me in working constructively with the management team at Children's to remedy these errors in a timeframe that we all expect - now. Not next year, not upon further study, not as a "high priority" - now. I will be making daily posts to this blog to update you on issues with our current inpatient, our daughter Hunter, and the progress of my discussions with the management team at Seattle Children's. I urge you to add to this blog, contact Seattle Children's CEO - Tom Hansen - directly, or contact me at fred@fredwhittlesey.com to get involved.

This is a fixable problem that has been tolerated for far too long. We cannot fix the US healthcare system today, or even all hospitals in the Seattle area, but we can, and will, fix the one that is critical for our childrens' well-being.