Critical Communication

While on an airplane this week I was close to the front and smiled as the flight attendant looked frustrated when she rambled some words about meeting our luggage when we arrive at the “jetbridge”

She saw me watching her frustration and offered an explanation. “I will have 40 people asking me where their luggage is when they get off the plane” she said. ‘I just told them but they don’t listen.”

I asked her if she ever listened to herself and heard what it was she was saying. “I know that my luggage won’t be waiting for me” I told her. After all, I just used the same airline the day before and I had to wait for my luggage to be brought out.

“How about you tell them to wait for their luggage?” I asked her. She acted like I just discovered a long lost secret. She told me that this was a great idea. “And what was that word you used where our luggage will be?”

She described the jetbridge as the walkway where the landing meets the plane. “And how many people do you think know what a jetbridge is?” Or, I wondered, hear what she is saying through the sound of the engines.

While waiting for the plane to park at the gate, we decided together that she would now tell people to leave the plane onto the ramp and move to the right and wait for their luggage. I wonder if she will still have people asking anymore where their luggage is.

Health Literacy (my opinion)

I am a big supporter and believer that there is a problem with “health literacy” in this country. Described by the American Medical Association, Health literacy is “the ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.”

The AMA Foundation came out with a film being used to explain health literacy to the medical profession. Feel free to watch the film and come back with your own opinion. View film here

If, I could speak to Mrs. Walker, I would first tell her that intelligence is not about using big words that others don’t understand. Actually, using “big” words is actually a sign of insecurity or it can even be inconsiderate. People know what others can and can not understand – in most cases. If someone is considerate, in tune to others feelings or comfort level, they should recognize if someone does or doesn’t understand.

Mrs. Walker keeps using the word “intelligent” which makes this film good for the doctors, but what does it do for the rest of us who do not have a an education in health but may be brilliant in other areas?

Measure the Living!

Aha, you measurement people! So, you say we can’t measure lives saved? Well we can, people who advocate for themselves or others have begun to speak up. A recent story was printed on the CNN.com website Empowered Patient that tells the experience of actor Evan Handler and his advocacy for himself why hospitalized for 8 months.

Other stories that we don’t read about like the 4 moms who pulled their kids out of a Long Island hospital also show how advocating for your family may save lives.

We need to start learning about people who speak up and get action so we can begin to report on these stories. This is our measurement! If you work in health care and a patient has spoken up, and it made a difference, I want to hear from you! If you have advocated for yourself or a family member and it’s made a difference, tell me your story! Go to PULSE of NY and link to Share your Story.

Wal-Mart Grant

I just returned from a photo –op where a few of us accepted the “big check” of $25,000.00 from Wal-Mart for patient safety education and advocacy training. It’s a great day when a corporation recognizes the need for our work. Since the moment I learned that we received the grant my head has been spinning with ideas. It seems so many of the things we have wanted to do to make patient safety information accessible can start to unfold.

NY State Senator Kemp Hannon, the Chair of the NY State Senate Health Committee joined us for the photo. I was glad he came to see the additional support we are getting. I was glad he came to support our work too.

Leslie, Charles, Diane, Sandra, they all came to show support. It is a wonderful community we have built and are building around the sadness we have all once felt. It is a relief that we can put our knowledge and passion into something so constructive. I hope others will follow!

More Talk

Two times today I had the opportunity to hear presentations about our health care system. The first presentation was at a luncheon where NY State Senator Kemp Hannon and Michael Dowling, CEO of one of our largest health care systems in New York had a conversation with the president of Farmingdale College, Dr. W. Hubert Keen and the audience. There was nothing mentioned about safety. Although the three gentlemen were personable and answered questions about today’s health care costs, I didn’t get the impression anything new would be done or any changes would be made because of this event.

The topic of medical malpractice cost was discussed and the blame went on the large payouts. Sitting at the table with people I didn’t know, I became enraged at the woman next to me who agreed that the large settlements were to blame. I turned and snapped at her and said “they have to stop injuring and killing people.” She reluctantly agreed with me too.

On the other side of me was a defense attorney who worked for a major hospital. He told me a brief story about how he “settled” a case for a large amount of money when he believed there was no malpractice. I asked him if they actually paid the patients family that much money and he said “no” it was significantly reduced.
Later at Hofstra University the panel, called “In Advance of Presidential Debate” was a Town hall meeting on health care reform.

The panel was moderated by Alvin Bessent, editorial page editor at Long Island Newsday, and featured as panelists were:

• Richard J. Umbdenstock, President, American Hospital Association;
• Mark T. Bertolini, President, Aetna Inc.;
• Michael J. Dowling, President and CEO, North Shore-LIJ Health System, and Chairman, National Center for Healthcare Leadership;
• Sara R. Collins, PhD, Assistant Vice President, Program on the Future of Health Insurance, The Commonwealth Fund; and
• David M. Weiss, PhD, Professor in Hofstra University’s Masters in Health Administration Program, and Health Professions Family Studies Department.

Here, the conversation of safety and quality came up beginning with Mr. Bertolini. He quoted the numbers of deaths and injuries due to medical errors and his concerns were followed with comments of support by Mr. Dowling.

When asked about disclosure, Mr. Dowling told the audience that there are programs around the country which are encouraging full disclosure following a medical error. He knows that evidence and experiments have been done to show that the public appreciates full disclosure and he expects to be doing more of this in the future.

Someone asked what we will be speaking about in 4 years when we once again are gathered to have this discussion about health care. Even more than 4 years ago I was on a panel and heard many conversations about disclosure being discussed at medical conferences. Proof that it does not raise the amount of medical malpractice payouts doesn’t seem to matter. Disclosure is rarely is being done for patients and their families. I am sure in 4 years, we will be right where we are today having the same conversations.

The cost of malpractice insurance came up. One panelist told the audience that medication errors are costing $9 billion a year. The panelists agreed this was not a problem.

Finally, I found the real disconnect is what I have been saying for years. The people in charge of health care decisions are too far removed from the patient. No one on the panel, making decisions in health care, ever treated a patient. Though they have been patients, I’m sure, being the CEO of a medical establishment is not the same as being a patient and an office worker, house wife or retired senior citizens. Patients and their families have a great amount to add to the dialogue, but they don’t always ask us.

To watch this program go to Educate ‘08

Count the Survivors

Who is counting the people who survive substandard medical care? I just met with the “moms” who left one hospital at different times, and in different years because they felt they were getting inadequate care. Their children survived. Other children died. But, children are hospitalized because they are sick. So people don’t understand that sick, doesn’t mean dead.

It’s hard to prove that the dead children aren’t dead because they were sick or because of the inadequate care accept that the state came in and closed down that department following some “unexplained” deaths. But when you put the newspaper away and go on with your business, do you forget? Some do, but for those who live it, they will never forget.

Four families used their right to leave a hospital with their sick children and get the care they needed. The children survived and returned home following the care they received. At one hospital they were being treated for the wrong illness. They were all born with heart problems. If they would have died, it would have been blamed on the bad heart. Hard to prove otherwise, until you look at the survivors.

The Verdict is In

We have all heard about the verdict, $10 million $20 million that seem like easy money. But, the fact is these awards are rare. They often get reduced and the lawyers, who deserve to be paid for their hard work, also take a piece of the dollar amount “awarded” to the patient or family following a medical malpractice case.

In the case of James his mom walked away from a settlement, something most people don’t get a choice in doing. The lawyers didn’t get paid either that day but allowed Mary Ellen, James’ mom to be in control of her future – something the healthcare system took away from her when her baby died because of the care he received while hospitalized.

Most medical malpractice law firms, I suppose would frown on a client walking away from the settlement. Instead, I have heard about the wording found after the family signs with their lawyer that they will never be able to speak again about the case. They are sworn to secrecy and in some cases, they just can’t discuss the amount of the settlement and other cases, they can’t discuss the death at all.

In fear of being sued, some families begin to stop ever acknowledging their loved one ever existed. They never talk about the child, mother or father again. Chances are, the lawsuit tells them the family can’t talk to media or publicly disclose the information, but in the sad and painful place the family is left, they just stop talking altogether.

Many people knowingly make that painful choice to take the settlement and not be able to discuss certain parts of the settlement or case and move on. It’s a difficult decision.

To take a settlement – or not, is a very personal decision. Understandably the insurance companies will settle more easily knowing that the patient or family will never talk. Families who are willing to go that route should not be judged. That settlement is, after all acknowledgement that there was a case and a settlement and even if it’s not for public information, it is a time the family can begin to heal and move on.

What Kind of Work Do You Do?

At a recent backyard party a friend asked me what kind of work I do. I have grown to dislike that question since there seems to never be an easy or comfortable answer. “I am a patient advocate” I told her. “I teach families and friends to help the patient”. I quickly corrected myself “I am a patient safety advocate”. I wanted to be sure I wasn’t leading her to believe that I am teaching bathing the patient, bandage changes or encouraging the family to go to the hospital and sit quietly in a corner waiting for the doctors "orders".

When my friend asked me why I did this, “was there a personal experience”, I felt my body tense as if to say why does there need to be a reason? It is a good and noble cause. It is very much needed but not taken seriously as a profession. If there has to be a reason, than it is something I want to do like a hobby. It is much more than a hobby. Why did I need a reason?

In this case our friendship grew in other areas and I realized there was never a reason for her to know exactly what I do with my time. Or, just as important why I got involved. So I began my elevator speech about the need for patient safety education and finished with a brief explanation about my sons death because of his medical treatment. When I paused ready to receive questions, I saw the pain in her eyes as she lifted herself out of her chair reached over and hugged me and said “I am so sorry, I didn’t know”. We continued our afternoon together but all along I felt sorry for her, as I do the others – who don’t know yet just how scary and dangerous a hospital is.

The Joint Commission Survey

After years of patient safety education the highlight of my work is being able to attend a Joint Commission survey. It helps patient safety come full circle while my focus stays on the patient outcomes but I can see things through the hospital policies and procedures.

As a Commissioner on the Joint Commission (also called a board member) I am one of 7 “public members”. I am not there as a representative of a healthcare organization such as the American Medical Association, American College of Surgeons or any one of the other prestigious groups who make up the governing body of the JC as it has been called since the change in name in 2008. As a public member, I am there as a patient, potential patient, family member of a patient or someone from the public with an interest and some knowledge (and passion helps) in patient safety.

To participate in surveys, commissioners observe the process so we can participate somewhat intelligently on the decisions being made at the board level. It also helps being a member of the Accreditation Committee. The Accreditation Committee is where discussions happen following a survey when there are outcomes that need addressing.

Each team of surveyors has someone in charge of the group. This is the Team Leader and basically set the tone, and run the survey. The team consists, usually, of a nurse, doctor an administrator and / or a life safety code specialist. The life safety code specialist specializes on the environment of care. This includes fire safety, engineering, electronics and much more as it pertains to the buildings safety.

The survey begins with a meeting in the lobby of the hospital before 8:00 AM. By this time, the facility staff had less than an hour to know of the team’s arrival. They are informed, by way of the internet that the surveyors will be there. They are given the teams names and some background on the website. At this point, either the organization is ready, or not. There is no planning that can happen now.

Generally greeted warmly, there is a sense of discomfort in the air as now these unannounced guests will be taking over offices, go through files and interview already overworked staff. Sometimes people get called in from vacation and soon all leadership begins to envelope the surrounding rooms ready to answer questions, assist in tours and retrieve files and books of information.

The courtesy shown by the surveyors are a clear example of their own knowledge of being on the receiving end of a Joint Commission survey. They too work in hospitals and have an understanding of the process from both sides.

As the surveyors get settled in, introduce themselves to each other, share some small talk about the facility and their past experience, the hospital staff is preparing in another room a meeting with all the department heads and senior level staff.

By 9:00 AM everyone is crowding into a large conference room. There can be as many as 15 – 20 senior leadership depending on the size of the facility. The team leader begins the introductions.

Once the group has shared pleasantries, the team leader will discuss why they are there and what they expect to see. The organization staff will give a history and overview of the facility. This will include their size, staff, accomplishments and the neighborhood they serve. The team will now go back to continue reading by-laws, hospital policies and reviewing the organizations books and information related to quality. The administrative staff will stay available on the other side of the closed doors in case the surveyors have questions and they will be available to retrieve additional information.

The team discusses their plans amongst each other which usually consist of reviewing more information such as credentialing, policies and procedures or doing tracers. A tracer is reviewing the list of all hospitalized patients including their age, length of stay and diagnosis and picking a patient out to trace from the moment they arrived at the facility to the present.

During the tracer, the surveyor will be looking to see if standards are met such as writing the medication appropriately, checking the patients vitals and patient teaching. While in the building, the surveyors will note if they see medical staff wash their hands, wear name tags and practice proper patient identifiers such as asking the patients name, birthday and checking the arm band. They will look for clutter, expired packages and any unsafe conditions.

The surveyor will interview the nurse caring for this patientduring the tracer and ask to see, in the chart if all appropriate records are kept. There may be discussion about restraints, use of medication or sedation during a surgical procedure. While tracing a patient the anesthesiologist will be interviewed as will the nurses at admitting and even the people who clean supplies. Every moment of that patients stay is traced and recorded. The patient is often also interviewed about their stay. This process is repeated throughout the survey. The team members are followed closely by senior management and escorted through the building so questions can be answered and charts can be easily retrieved. At each department the group is met by the senior staff of that department.

After each tracer, a report is written by the surveyor. The team meets at lunch and types their reports and shares their finding with each other. They compare notes, express concerns and ask advice of each other. After lunch they are off again to do more of the same.

The second and third morning consists of a brief meeting about the findings the day before. All the organizations leadership meet and listen to what the surveyor found that was good, and that may be a problem but with no hint of the final report.

Each team members has a chance to share their findings and the organizations leadership can ask questions and for clarification.

When sharing with the leadership potential problems, the surveyors do not use names. They are looking for system problems and how the problems can be addressed and approved upon. They are looking for the same problem with each patient, if in fact a problem is found. Is it the individual? Or is it the way things are run there? Often the surveyors have suggestions and will help staff make improvements, but they are not there to give the answers to the staff, they encourage them to come up with their own answers and make it work.

The surveyors can be tough, but they are fair. They know if something is serious and they have no qualms about sharing their concerns. That is, after all what they are there for.

The life safety code specialist spends just one or two days and looks at the roof, the kitchen, the electrical and exit signs. He will ask about the fire drill and how the fire doors work. He will speak to staff about their training and knowledge of emergency situations and protecting the newborns from abduction. He too has an important job and it’s completely related to safety. He gives his presentation at the end of the day and would usually leave before the others.

The final day, senior leadership come to hear what was found to be good, potential problems and anything more serious. At this meeting board members of the facility are often invited.

The report will include RFI’s or Requirements for Improvement. RFI’S can be fixed and improvements made. Too many RFI’s are a potential problem but still each organization is given a chance to fix the RFI’s. Once the surveyors leave, there is now contact with the corporate office of the Joint Commission and that is how contact will continue.

Some final thoughts; The Joint Commission will not fine or discipline the facility. They will give them, when appropriate RFI’s. Too many, depending on the size of the facility can lead to possible loss of accreditation which means loss of funding. In reality, I don’t want to see hospitals lose funding or have their doors closed. I want to see them improve and keep us safe.

Please feel free to comment to this blog.

At the Top

Who are the people behind the big corporations being sued for injuring and killing hundreds of thousands of people each year? The pharmaceutical companies the healthcare workers, the hospitals? There are people who work in these industries who are truly trying to stop bad outcomes – most of the time.

Though they care, and they try, many of the people at the top are too disconnected from the people who touch the patients to truly understand what is happening every day to the patients. I want to care about the people who work in the industry. I really, really do want to care. Actually, I do care. But I just don’t think they are doing enough.

If the people at the top really wanted to see what is happening to their patients, they would spend time sitting in the lobbies and listening to conversations. They would take off the suit and tie and ask the security guard how to get to a room on the third floor. They would use the bathroom in the lobby of their facility and read the graffiti on the wall, see that there is no soap in the dispensers and see that the toilets are filthy early in the morning.

I went into one hospital bathroom and I swear there was a homeless person living there.

I sat with a representative of a major pharmaceutical company recently and he told me about the changes being made even before the newspaper story hit about a major error. They are still being sued even though the changes were started before this error occurred. I was glad to hear that they were taking patient safety so seriously but why did it take so long. Children die because of packaging errors and the problem gets changed. That’s what we want in patient safety right? But what does that do for the family who lost a child? Can you actually tell me this error never happened before? Or, is this the first time they were caught and forced to speed up the process of change.

A mom dies from an infection and the hospital is going to post the infection rates on their website. Does that bring back the mother to her young son?

We have the data to stop these medical errors and infections from happening. We must stop them from happening.