To All Parents: Ask!

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

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

"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

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

"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

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

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

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