What You Can Do

I am flattered and humbled when asked to be a patient safety advocate for someone. I’m good and know I can do the job. Sadly I can’t guarantee someone’s safety, some things have to be left to the people who work in medicine to do the job correctly.

What is even more important is not my sitting at a patients bedside or taking them to the doctor, but making sure they have adequate family (and friends) support.

Have you ever said the words “if there is anything I can do please call”? Well there is something you can do. Offer to come over and make a list of the patient’s medical records, medications and allergies. There is always a place for the person who wants to make a tuna casserole to help out, but there are things that need to be done that often are not even considered.

When your friend tells you that he / she has cancer, needs surgery or has been diagnosed with a new ailment such as diabetes, high blood pressure or multiple sclerosis, grab a marble notebook and pen and write down their thoughts that they share, questions they may have and fears they begin to tell you. These items on paper can become a lifesaver when they are supposed to remember in the doctor’s office what they were thinking 2 weeks ago.

For Thanksgiving or the holidays invite a friend to dinner and say let’s help each other get our medical life in order. Most of us have at least one day off over the holidays, use 2 hours to organize your advanced directives, health care proxy and other important legal papers.

As I help my friend move his grandmother’s belongings following her move to a nursing home, we lift an item and see a name taped to the bottom. "These are the people she wants the item to go to" he tells me. What a considerate woman she must be to think ahead and plan who will get the statue and the vase. But most of us don’t think of talking about our last wishes for ourselves. Many of us don’t want to face it – so do it for a friend and they will do it for you.

Patient Safety, a Convenience?

In the last weeks we read about hospital workers protesting their right to not get vaccinated against the H1N1 flu. They protested outside hospitals but still, there was a mandate that hospital workers get the vaccine to keep themselves, and the patients from getting the virus. A mandate to keep us safe until………………. It is no longer available?

Ironically the government wants to keep us safe while it is convenient. I have always been skeptical about policies that include paying large amounts of money in purchases to, lets say the pharmaceutical company that makes the vaccine? Is it only an amount of time until we trace that company back to campaign funds? I have no idea. I’m just guessing but it does concern me that the governor wants to keep us safe by making something mandatory until it’s no longer convenient.
I would hate to think that there is a choice to refill soap dispensers or practice other safety policies and standards until of course, it’s just not convenient.

NY STATE HEARINGS

During the state hearings this week I heard, as I have heard in the past, hospitals and professional associations of medical groups tell about their wonderful services and patient safety practices. These hearings, I learned were triggered by a series by the NY Daily News this summer of problems related to the safety of patient care in New York. (see below for the articles).

I often wonder why the people involved don’t use this opportunity to explain why they have problems. After all, we all know there are problems – too bad it’s the media who has to expose them. Imagine if the leadership actually asked for help? If someone can do better, let them try.

Imagine if just once we heard someone say “Yes, my hospital has serious infection control problems. We don’t have money to pay for people to fill the hand sanitizer and often run out of antibacterial lotion without enough money to fill them. We have patients who speak 100 different languages and need more people to help translate. We need better security to be sure family members are not bringing in outside food, flowers or clothing that may carry germs or may not be appropriate for the patient’s care. We need better training and more money to go to conferences and learn what is new in the rest of the country. Our nurses are overworked and the patient’s are unhappy with these ugly, backless gowns. Patients are supposed to be our “partners” but who is training them to participate in their care?”

Would someone lose their job for being honest? Maybe, but if the next person can get the job done isn't that really what everyone wants? Or maybe, if no one can make hospital safer the way things are, the problems can finally be addressed.

Instead we hear that everything is done right, training is appropriate and if only a small percentage of people were injured or harmed, it still would be in the hundreds. Which is more of a reason to aim for a zero tolerance of unplanned death or injuries.

Daily News investigates faked records and fatal blunders at city-run hospitals

Hospital's records were 'altered and rendered illegible' in patient's death

Lincoln Hospital specializes in hiding fatal errors

Bellevue Hospital tipped-off to safety inspection; discharged patients, massaged records

I was invited to give testimony at the NY State Hearings for Patient Safety. Hosted by Assemblymember Richard N. Gottfried and New York State Senator Tom Duane below is my testimony;

Improving Patient Safety In New York: Understanding and improving the current system
October 19, 2009

Include the Patient and Family in Patient Safety

Ask your doctor to wash their hands before touching you, bring a list of medications with you to the doctor, have an advocate ask questions for you if you can’t ask yourself. These are the things we are told to do to be “good” or empowered patients and stay safe in our healthcare system. But if we do these things, will we truly be safe?

Learning how to be an active patient is more than asking a doctor how many times he or she has performed a procedure. The Agency for Healthcare Research and Quality or AHRQ a branch of the US Health and Human Services says: The single most important way you can help to prevent errors is to be an active member of your health care team.

Being part of this team means understanding that hospitals are dangerous places, that medical professionals don’t always wash their hands and that medication errors are dangerously common. Being an active patient means being an informed patient and the first thing we need, is knowledge about a system that fails us more often than the public is aware.

More than 20% of adults read at, or below a fifth grade level. 90 million Americans have difficulty comprehending and complying with health and medical advice. And yet we are continually handed information to read at our most vulnerable time. When we are being admitted to a hospital with symptoms of a heart attack, when we are in labor, or have just suffered the trauma of a serious accident, are we supposed to read and comprehend material that medical professionals still don’t not follow basic safety practices such as hand washing, so we must remind them?

Safe patient care can begin at home with family, friends and even volunteers functioning as patient safety advocates. Training family appropriately to help with communication, care and treatment won’t replace competent care, but a loved one who understands what bedsores and infections look like can potentially save a life.
Nonprofit organizations that focus on diseases and health must include safety in their community educational programs. Surgery safety education programs such as the Surgical Care Improvement Project (or “SCIP”) for cancer patients can mean the difference between a positive outcome and a disastrous one. The US Department of Health and Human Services spent money on rolling out the SCIP program for patients, but does anyone even know about it?

As a patient safety advocate working with patients and families attempting to receive safe, quality care, I have had opportunities to witness some of the most wonderful treatment of patients. I have also had opportunities to witness some horrific acts that are not only dangerous but direct disregard of policies and standards that were set for safe, quality care. With first hand knowledge, I watched as my son bled to death following a tonsillectomy. Three years later, I had a child who was born severely premature. Both incidents took place in New York hospitals. I, myself, have had the chance to see the worst in healthcare and the best in healthcare. I have since founded an organization, PULSE of NY that teaches patient safety and family centered patient advocacy. We work closely with the medical community but with no formal commitment in partnership.

My work has brought us national attention because the leaders in patient safety almost all come from outside New York. There is a weaving of the patients and families voices in how patient safety should be addressed throughout the country, but not in New York. This year, as a fellow of the American Hospital Association Patient Safety Leadership Training I am being trained by nationally recognized leaders in patient safety. Even they are including me, the patient, in this extensive training.

There needs to be a place to turn to when care is below standard. Reporting bad outcomes must be made easy for the patient, the family and even front line staff. A place is needed to report unexpected events that can be responded to immediately and give the person reporting the event some piece of mind that he or she is doing the right thing. Many hospitals have rapid response teams that can be triggered by family members but no training for those family members on how to use it. There are measurements for outcomes but no one advertising their existence and there are hospital report cards that just sit on a website with no one actively acknowledging their existence to the public.

• There should be an immediate response from the hospital (within 24 hours) when someone reports a possible deviation from standards.
  
• There should be a patient safety advocate independent of the hospital in every county in the state to address patient and family concerns.
  
• Reporting of sexual misconduct should come with counseling.
  
• The untimely death of a loved one should come with a support hotline to address the unexpected death – even before the final report is complete.
  
• Patients and families need to be involved with Root Cause Analysis. Without the patient or family’s participation, you will only get half the story with important facts being overlooked, missed or misinterpreted.
  
• Patient safety committees in hospitals throughout the country often have patients involved in their work. Hospitals in NY should be required to have patient safety committees that involve their patients.
  
• Finally, patient safety needs to be included in school curriculums. Children as young as 6th grade can learn about look-a-like, sound-a-like drugs and about communication with their healthcare providers.

Patient safety should be taught the same way seat belt safety is taught, the same way young women are taught how to examine themselves for breast cancer and the same way young people are now taught about HIV/AIDS. It was only after the public was involved in prevention of these diseases that the death rate started to drop. The public also needs to be involved in patient safety to bring down the death toll from preventable medical errors. Statistics show it is only a matter of time until we all feel the impact directly.

Thank you.

12 In a Room Part 2 ...

Maybe you read my original post called 12 in a Room; we just had our second week together.

I don’t “do” fun I told my new found friends and colleagues as we started our second week of team building in our patient safety leadership training. I just don’t mix fun and work, and patient safety is all work. Or, can I have fun with people who share the same values for safe, quality healthcare on week long retreat? I have started to find myself laughing with them. Maybe it is because there is a comfort laughing with the same people who make me cry. My colleagues, a word I never thought I would feel comfortable using around people who have so many initials after their name they have to buy extra long stationary to sign a letter - but yes, they have in fact become my colleagues – and I hope - friends.

I found myself in tears as some of the presentations to the group were being delivered. Our Action Learning Project or ALP is a project we each choose to work on for the year that will improve patient’s safety.

I wiped my eyes as I heard the others share their projects as we were expected to give advice and applaud their work. I was crying tears of joy that I can be part of something so deeply meaningful and important. Possibly witnessing the cure to medical injury, each of these projects has the capability to save lives. Unfortunately, I also fear that these projects won’t make it past the walls of the institution where they start out. Could they save lives in all hospitals or will their work be stifled like many are?

I was asked by one of the Fellows if I feel more comfortable with them this time. She was kind enough to remember my discomfort last time we were together because I didn’t know where I fit. I do fit – we are all working to make healthcare safer, in our own way, in our own community, developing our own programs and projects as we learn to become leaders in the mysterious,complicated, hidden world of patient safety.

This time it is more stressful. The pressure is on. Our projects have all started and we all share some uphill battles and roadblocks.

Our training this time included an interactive discussion with Leonard Marcus, PhD the co-director of the National Preparedness Leadership Initiative of Harvard. We learned about how the brain works under stress and “fight, flight or freeze”, the reaction of the brain when surprised and how we should never make decisions in this state.

We heard from John Banja PhD, Director, Ethics in Research, Medical Ethicist, Center for Ethics, Emory University, Atlanta Georgia. I have been a fan of Dr. Banja for years and he talked disclosure of medical errors with role play and in depth discussion.

Other speakers helped us learn how to develop and hold focus groups, we learned about problems with hospital discharge and the huge cost to readmit patients, high reliability organizations and patient safety tools available at AHRQ.

The week started with team building down at the small beach in Chicago overlooking Lake Michigan.

We wrapped up the four days with a group discussion about how beneficial this training is, how much we are learning and how we can use this information to improve patient safety in our ALP and community we serve.

I feel very blessed to be part of this small, intimate group. Their knowledge, willingness to share and energy is one of the things that will help me stay focused on my ALP. I feel blessed to be part of this training. The information we a receiving is priceless, as is the relationships we are making.

I went to the open discussion on transforming patient safety held by the National Patient Safety Foundation Lucian Leape Institute members who are world recognized leaders in healthcare. These interactive conversations were an opportunity to hear what this group of top, patient safety experts are pursing and recommending to create change in patient safety.

Each small group was led by one of the members to help us learn - but they too listened for feedback. Medical students filled the room which, for the first time gave me great hope for the future of patient’s safety.

The first group I sat in on was led by Dennis O’leary MD, President Emeritus of The Joint Commission. He spoke on Reforming Medical Education. Acknowledging the lack of patient safety in medical school education, Dr. O’leary suggested some draft recommendations for medical schools such as patient safety education should start early, and be a required curriculum.

He also suggested that potential medical students should be screened for questionable behavior. Once they become students, they can go on to become problem doctors if there is no screening process. There also needs to be an environment created that shapes skills attitudes and behaviors.

One audience member suggested that medical students need to be asked, following a conversation with a patient to talk about the patient. Not the diagnosis, disease or treatment, but the patient. Recognize if a hospital room has flowers or cards, find out who they are from. Learn about their life and their interests. Patients want more compassionate doctors and this will take education and practice.

The next session was led by Donald Berwick, MD, MPP CEO of Institute for Healthcare Improvement. Dr. Berwick led a discussion on transparency. There are four different levels of transparency in healthcare. 1) Disclosure after a medical error to the patient, family and staff. 2) Learning within a system and sharing the information 3) Sharing information amongst other facilities and 4) Reporting information to the public.

The group discussion was about reporting information to the public. Although only 26 states require mandatory reporting of medical errors to the public, there is still a lot of controversy if states are really reporting, who is watching to see if information is reported and does the public read this information. Or is this information available just for hospitals to compete against each other?

Public reporting of hospital infections or medical injuries is something the public wants to know about but the information must be complete and accurate.

This program was well done and helpful. It’s good to see that this information is being discussed amongst our leaders, but when I leave I wonder why this isn’t all happening already. If the public only knew what is being talked about as a plan, and not presently being done, they too would be shocked at how slow patient safety is moving.

I was recently explaining the programs and mission of PULSE of NY. As the president of PULSE of NY, I often need to explain what, exactly a grassroots patient safety organization does – and why. In this case, it was a person who was a high level administrator of a local hospital. After describing our work in patient safety, this woman asked what we feel about flu shots and the H1N1 specifically.

“We don’t take a position on flu shots” I explained. Obviously annoyed at my response, she questioned me repeatedly about the safety of patients when people go into the hospital and have not been vaccinated. I explained that the shot is being debated. We don’t get into debates about the rights of people to get vaccinated, or not. What I will debate is the right of a patient to get the correct vaccination in a clean environment. Still not satisfied she continued the discussion. I went on to explain that we can not guarantee that a person who has had the vaccination is not covered with other germs.

Most of us have MRSA on our body but if we are healthy, it won’t affect us. It is when we bring the germs into the sick patient there is a problem. So whether you have the flu or a cold or not, hand washing, covering your nose and mouth when coughing or sneezing is essential to the patient’s safety and if you have symptoms – stay away.

I have always said there are 3 areas I won’t debate; religion, politics and vaccinations.

I had the great honor of being asked to present, with two other colleagues, the 2009 Florence Nightingale and Dr. E. Codman Patient Safety Day Award This was the first time the award was presented and Dr. Lucian Leape was the recipient .

I joined John McCormack from Massachusetts and Becky Martins from Maine at the Harvard School of Public Health to meet with Dr. Leape. Many of us know Dr. Leape as the “Grandfather” of patient safety. He led the landmark study released in November 1999 “To Err is Human, Building a Safer Health System”. This study reported that as many as 98,000 people die each year in hospitals from preventable medical errors. The release of the IOM report gave many patient safety advocates credibility in our call for change.

Patient Safety Day, held each year on July 25th is a time to remember those who have been harmed by their medical care. This is done by lighting a candle at noon and 6:00 PM and sharing a moment of silence. In New York, we have held sharing circles, speaker programs and very solemn moments over the years. It is after all, the chance to remember why we do this work.

Dr. Leape is a charming man with eyes that light up and a laugh that touches the soul. He is such a gentle and charming man. But, when he talks about patient safety, he has serious moments. Moments that make me wonder what is really twirling around in that brilliant mind of his.

I asked Dr. Leape what he would say to the advocates across the nation if he were to whisper in our ear what we should do to make change. He said to continue to push for transparency. I too

agree that we need to talk about a problem if we were ever to fix it. To make change of a problem, first you have to acknowledge it.

Following our meeting and award presentation to Dr. Leape we met up with Tanya. Tanya is from New Hampshire and a PhD candidate going to the University of Massachusetts Medical School. We have one thing in common besides our passion for patient safety. Tanya lost her 4 year old son following a tonsillectomy. Tanya didn’t know people can die from tonsillectomies. I too didn’t know. Unfortunately, too many people just don’t know. If we talk about the problem, we can address it. Dr. Leape addresses it.

Congratulations on your well deserved award Dr. Leape.