The Stimulus

I went to a meeting yesterday hosted by the Nonprofit Coordinating Committee. Thank goodness for organizations like this that have seminars and programs for nonprofit organizations. They offer information, advice and resources to organizations in NY at no charge (accept a small membership fee). The opportunities to network are valuable too.

This seminar, “Managing in Hard Times: Effect of the Federal Stimulus Package on New York Nonprofits” is part of a series.

The panel explained how the money will be divided up between the different areas. My concern was the billions going into healthcare.

The US Department of Health and Human Services, Agency for Healthcare Research and Quality, (AHRQ) has information for patients and families. AHRQ reports on their website that: “the single most important way you can help to prevent errors is to be an active member of your health care team.”

But when I asked the panelists at this seminar what the plan is to fund programs to help make patients and their families more involved in their healthcare, the first panel, from NY City programs said they will have to get back to me.

Money from the US Health and Human Services is going towards IT. Electronic Medical Records is important for patient safety. But, it surely is not all there is.

Additional information found on the AHRQ website is that “medical errors are one of the Nation's leading causes of death and injury. A recent report by the Institute of Medicine estimates that as many as 44,000 to 98,000 people die in U.S. hospitals each year as the result of medical errors. This means that more people die from medical errors than from motor vehicle accidents, breast cancer, or AIDS”.

The US Department of Health and Human Services is acknowledging that patient’s safety is a big problem. But, medical records is not the only problem:

“Doctors often do not do enough to help their patients make informed decisions. Uninvolved and uninformed patients are less likely to accept the doctor's choice of treatment and less likely to do what they need to do to make the treatment work.”

So how do we fix this problem? Funding needs to be allotted to educate patients, train advocates and empower the public with information.

The second panel, all from Albany, many representing the governors office were asked the same question. I wanted to know what they were going to do to be sure the public is aware of their role in patient safety and reducing medical errors.

Their response: We’ll get back to you on this.

Hospital Posters

I walked through the hallways of a Long Island Hospital on my way to visit a patient and noticed that this long hallway had some signs hanging up about patient safety.

I was looking at what the large framed posters were about and the word “medication” caught my eye. I stopped to look at the rest of the posters and there was one on preventing falls, anesthesia safety, infections as well as medication safety. I was pretty impressed with these posters but also realized that anyone walking through this long corridor was probably not going to stop to read these posters.

So, I did what I’m sure anyone would do, I visited the lobby, waiting areas and patient hallways to see if there were any additional wall hangings where people would have the time to read them. They weren’t there.

I wonder why these wouldn’t be made smaller and put in every patient’s room. It only makes sense that these notices are to protect everyone – the patient and the staff. It’s so much easier asking about the medication or understanding how falls happen when it is in our face. Signs and posters like these give the patients and the visitor’s permission to be involved. When the staff and the patient are seeing the same information, that’s how a partnership forms.

Patient Safety Commitments

Now it’s Twitter. What the heck is Twitter you may wonder unless you already Twitter. It seems, in case you want everyone on the planet to know what you are thinking every minute of the day, you can now write about it. I don’t, who has the time? I have to make calls to the state trying to get our funding released. Our senator, who graciously promised us funding says it’s the governor holding back the funding. The grants department says it’s the NY State Department of Health. None of them, so far return calls. I have to try to get the people who make promises or verbal deals that they will support our work, to answer their phone, return messages or acknowledge that in public, they shouldn’t make commitments that they can’t keep. Words are cheap and free.

I still have to return calls of patients who have been injured and to the families who lost loved one’s from preventable medical errors that they can, in fact use the American health care system and feel safe (although I can never say that because in reality, they shouldn’t).

I am spending time helping patients research doctors and hospitals, combine all their medication lists and research why their bills won’t be paid from hospital acquired infections. I have heard in the last few months from people who have suffered bad outcomes recently, long ago and who just want to share their story or want some serious help – yes, sometimes financial.

Now my priority is - can we afford to buy ink for the printer? Can we pay someone to update our website. Where can we get the most inexpensive hand outs printed up and shall we use the fax for fear we may not be able to pay for the bills?

Running a grassroots organization is time consuming and usually very fulfilling. The part that is painful is that it takes money to do this. It’s not a lot. I am proud that our budget is so low, that once when I was at a training, and groups were splitting up by budget, they didn’t even get to under $100,000.00. I had to request that we are recognized. Donations are so welcome. It helps to buy the ink, pay the phone bills so calls can be returned and mail patient safety information to the many people who still do not have internet access.

I hate the thought that so much time is spent on looking for funding. It doesn’t seem important that the ink is low and the paper is empty. What bothers me is that people who make commitments to patient safety and the community’s participation don’t come through.

Soon I will start naming names.

Inside a Long Island Hospital

A local newspaper did a 24 page article on a local community hospital. Giving a health writer full access to the facility for a week, this reporter brought to the community the stories about what it is like in an emergency room, treating sick or injured children and adults and the different life saving services available.

By being this transparent, I can only guess that the hospital CEO was looking for some sort of sympathy to the funding cuts or, in some cases, show the community how much work goes into running a hospital.

As a family advocate for safe care, I thought this idea was brilliant. It wasn't until I spent 5 months in neonatal ICU with my son following the death of my first son from a medical error and a year as a volunteer in pediatrics that I too realized healthcare is very complicated and there are numerous places errors can happen.

As a bedside advocate now for families, I can see where we envision a hospital is run by a nurse, or nurse assistant who whooshes in and out of the room with no other care in the world until his or her next opportunity to whoosh in and out again. There is no knowledge of other patients, other emergency's or paper work.

By allowing patients to understand a bit more of the hospital setting, we can appreciate the work that goes into being a medical professional.

Watching ER, House or the other medical shows on TV gives us an unrealistic view of healthcare. Being IN the hospital, when things go well does too. But, when things go wrong, it is difficult to then, and only then try to understand what may have caused the problem to arise. By being this transparent and allowing camera's and a reporter access, I am sure that more than a few people will become more vigilant in their care and speak up for themselves a bit more. And if not, we can also blame the funding cuts on that.

Missouri and Patient Safety

I just returned from Missouri where I had the opportunity to address the Missouri Center for Patient Safety Conference participants. I have said it before and I will say it again; any organization that invites me to speak about patient safety must really be serious. After all, I care about the patient – and only the patient. Don’t get me wrong. Its not that I don’t care about the others in the medical team; nurses, doctors, lab techs and patient transporters, but my concern is openly about the care the patient and their family receive while in the hospital.

The support system that is available to the medical team, to do their job right, was in this audience. Missouri is doing some great things for patient’s safety. Their patient safety organization is supported by the hospitals and health systems of Missouri, a sure sign they mean business.

It is exciting to speak with this group and hope that there will be some take-a-ways on how to communicate with the patient or family, how to teach about patient safety in the community or the importance of recognizing that everyone who they know and love may someday be a patient within their own health system.

I also had an opportunity to learn from some of the “great” people of patient safety. Many of us at a table shared stories; I heard some of their best practices and programs that are running in some of the hospitals. It’s frustrating that after attending so many conferences and learning so much, there is no place local I can use this information.

Wouldn’t you think someone at a New York hospital might say “come help us implement some of these programs?”

Unfortunately, hospitals are still not opening doors. They still do not, in many cases want the patient to have access. If they did, there would be patients and their families on every committee, in the board room and participating in programs about quality and safety. But, in New York, we still aren’t there yet.

Compassionate Communication and Patient Safety

PULSE of NY just completed day 2 of our workshop on apology and compassionate communication. The workshop was facilitated by Leslie Farrington MD, PULSE of NY newest board member. The idea was to learn if an apology can be delivered without saying the words “I’m sorry”. To some, the words I’m sorry have to do with “my” responsibility. It is a play on words but as we learned in these two, two hour sessions, words matter.

14 people participated; a perfect amount for a small focus group. There were 3 physicians, 2 in quality /risk, 2 nurses, 4 patient and / or family members and 3 observers / community members.

After introductions last week we watched the video ‘Beyond Blame” about a little boy who died during surgery in the mid 90’s. The film had us sympathize with the medical staff and learn some of their turmoil when something goes wrong. We also needed to remember the family and the pain they endured. The film set the mood.

We looked at the ‘disclosure” process from a registered nurse who is also a risk manager and very familiar with the disclosure and apology process throughout the country. She explained how physicians and hospital staff are being trained in disclosing bad outcomes to the patient and / or family. We then had a presentation about compassionate communication, how it is used to connect and listen and a discussion followed.

We ended on a good note last week to come back again and learn more.

Tonight we introduced ourselves again and reflected about last week. Many shared that they view compassionate communication as important but lacking in their training as medical professionals and in the patient’s experience in the healthcare setting. Someone suggested that they didn’t realize how just listening is so important.

Anne, a compassionate communication facilitator read a story about a medical injury and how compassionate communication helped the young girl who previously awoke during a painful procedure, through her next surgery.

Tonight we did some exercises practicing listening and reflecting and then Leslie did a role play with a woman who had a medical injury many years ago, Much of compassionate communication is about listening. We are accustomed to asking questions, giving advice or filling in blanks. Tonight we are introducing the skill of just listening, connecting with some feelings and the needs which are universal such as trust, sympathy and respect.

Leslie, a physician for over 25 years, listened as the woman shared her experience of years ago in the hospital. Leslie reflected back her feelings of anger betrayal and as someone said later, disrespect in not feeling heard. One of the people in the room commented on how it is so common to want to give advice. It came naturally for the people who worked in health care. The patient didn’t need advice, she needed to be heard. And Leslie offered her that.

One physician commented that doctors don’t get paid for “listening” there is no time. But we were assured that in Leslie’s practice, she encourages the patient to make a second appointment. Or, as Anne explained, the listening can come from anyone.

Our listening process took less than 10 minutes and the patient felt heard, respected and empowered.

The healing and connection that a patient experiences after being heard, helps the healthcare provider to gather important information, make the patient more compliant and trusting and will make the whole experience for all parties more productive and timely.

We then heard from Steve, also a board member of PULSE who is a nurse by training but a mediator for 7 years. He described how mediation can be for patients and families who have had a bad outcome. The discussion that followed showed me that we seem to all have a different view on mediation. For financial compensation, healing, closure, answers? With no exact mutual definition or even a reason for using mediation, it’s even harder to figure out what people want. I still say we can offer mediation as a third party who comes to the table with 2 parties willing to discuss what happened. Reporting the outcome to the National Practitioners Data Bank was a concern for a physician in the room. Not sure if that should matter. If the parties agree, it should be made available. Some people felt mediation is already being done through the disclosure process in hospitals. Others said that it is the patient representative who is there for the patient and / or family. Others commented that mediation is a tool for those who get turned down from the legal system because of the lack of financial compensation.

Mediation, as a form of communication would help parties come to an agreement following an unplanned outcome. We have a long way to go.

This 2 part workshop was just an introduction. We have so much more to explore and to learn. I would like to see an all day workshop. I would also like to raise the money to make this a paper that can be expanded on. Someone suggested this be offered in medical or nursing schools. At PULSE we have begun teaching forms of compassionate communication as part of our family advocacy training . Listening, connecting and really hearing the patient’s needs and feelings is as important as hearing what the healthcare provider is suggesting.

It was good to hear the differences which helped me see some of the obstacles. I won’t always agree but as Steve explained about mediation when we hear the word conflict, it has a negative tone. Conflict does not have to be negative. Disagreements are OK. It is how we resolve the conflict that matters. It can be done with compassion, with connection.

The 2009 National Physician of the Year Awards

Imagine my surprise when my phone rang late last week and a woman on the phone asked if I were Ilene Corina. She had John Connolly on the phone and he wanted to speak to me. What could John Connolly, President and CEO of Castle Connolly Ltd want with me?

He was inviting me, and the PULSE volunteers to The 2009 National Physician of the Year Awards Ceremony. Held at the historic Hudson Theater at the Millennium Hotel, New York City.

Seven of us went and it was a lovely evening with speeches and recognition and fine food. But what was important is that we, or at least I, can recognize the great work that physicians do as they save lives, connect with patients and generally love their work. It does not take away, for a minute, the pain someone suffers when things go wrong or, an outcome in care is not what was expected.

I am glad to have the opportunities to celebrate healthcare as well as know the pain of the unpredicted. I wish everyone had that opportunity.

Surgery

How do we choose where to have surgery? There is no easy answer. In most cases, we go where our doctor works or, if there is a choice, the hospital that we think has the best reputation. We can look up information on their infection rates or ask a nurse we know who works there, but none of these guarantee a “good” outcome to our surgery.

I had the opportunity to speak at a hospital in NY yesterday during Patient Safety Awareness Week and was very impressed with the attendance and audience participation. I was doubly impressed when I was greeted by the nurse in charge of surgery – before surgery, during surgery and after surgery, is how he explained what he is responsible for.

He told me about their “time out” which is done before a procedure so the medical team can check if they have the correct patient, if they are doing the correct procedure and if other safety measures are in place.

I was given a sign titled “Universal Protocol Time Out” with a script to be utilized before each procedure. It has the patient’s name, type of surgery or procedure and side or extremity with other check list information.

Any “no” answer it reads, stops the process. Not unlike a pilot in the cockpit, this sort of teamwork can really make patient feel confident and when done correctly, will make this part of the procedure a success 100% of the time.

I was given a Time Out pen that is given to patients to be sure the site of surgery is marked. I want terribly to open the seemingly sterile wrapper but instead, will keep it a souvenir.

The Time Out and marking the site of surgery are just a very few of the Joint Commission standards and basic safety tips. But, when a facility takes it seriously enough to put resources behind it, to be sure the medical teams have everything needed to make it fool proof, they should be recognized for taking patient safety seriously.

Was one person to slip, and forget to follow the standard procedures, the system may not work and patients, and their families may suffer. This is how I believe we should be choosing a hospital to have surgery but too bad we are usually not given this information. Maybe for Patient Safety Awareness Week next year this hospital will tell their patients how safety conscious they are so the patients can be that much more involved in choosing a hospital.

Patient Safety Awareness Week, Reflections

It’s Patient Safety Awareness Week and as it comes to an end, I want to reflect back what this week has been like as a patient safety advocate. I am so grateful that the National Patient Safety Foundation recognizes the importance of patients and families having a voice in patient safety. But, at a national level, that’s often all it is, a voice. What is being done, at a local level to include the patient and the community in patient safety? In my opinion it is still a big fat nothing (at least in New York).

I had the honor of sitting in at a presentation at a NY City health system for their leadership and another on Long Island for their whole health system. In both cases, they talked about patient safety, told stories of injuries or death and shared statistics. The IOM report was mentioned that as many as 98,000 people die in hospitals each year from preventable medical errors. I can’t imagine that 10 years after that report, there is anyone in senior leadership who isn’t aware of it. And, if newer staff aren’t aware of the report, why aren’t the medical and nursing schools teaching it?

To hear these presentations are bittersweet, I know we need to talk about patient safety to make patient safety happen. Talking is the start. But there should be more than talk.

I really believe that with my own presentations, and I am doing quit a few of them the last few weeks, I am offering more to hospitals and medical staff on what can be done to reduce errors than what I hear at these presentations. What is needed now is what the Institute for Healthcare Improvement offers; best practices. I am offering best practices and ways to include the patient and family. But by inviting me in to speak, am I leaving them with anything to “do”? I think I am. Are they doing it? I may never know.

I know that medical staff are told what to do to reduce the rate of injury or death, and Patient Safety Awareness Week is a time to (maybe) celebrate all they are doing. It would give me greater satisfaction if they used this time to include the patient and their family in this work. The hospitals and health systems should be practicing safe care all year, they could celebrate any time. But for Patient Safety Awareness Week it could be better spent by informing patients, and the community about what their role is in partnering in their care.

Patient Advocate

I spent 4 days at the bedside of a patient (and dear friend) which gave me another opportunity to practice and learn advocacy skills. There was nothing earth shattering about our stay but it sure was interesting.

I arrived before 8:00 each morning and stayed until after 9 PM. The registered nurses each had 4 patients with a certified nurse’s assistant having 10 patients. There was a “floater” nurse who helped when needed.

The hospital staff were unusually friendly. They smiled in the hallway and greeted each other as well as the patients. It was more like a hotel atmosphere than a hospital. This friendliness did not always lead into the patient’s room. Even though in most cases the nurse and nurse assistants were very friendly and kind, there were some who were not as patient or caring.

Kindness, I learned long ago is not a synonym for quality and being nice does not make for patient’s safety. Being kind and caring does open the door for a dialogue that can help avoid a bad outcome. For instance, when the night nurse gave the patient a new medication, the patient stopped him and asked why she was getting that and if there had been some mistake.

Years ago, I remember the nurses might say that “the doctor ordered it” so it was OK but in this case the nurse stopped and said he would check on it. He was pleasant and very willing to confirm the medication was correct, leaving the patient to believe it was OK to question.

Upon his return, the nurse explained why the patient was given the new medication. He continued, following his explanation to say that there are many medication errors made so it was good that the new medication was questioned. He was empowering the patient to speak up again in the future.

Another nurse came back the next day after doing a full search on why the patient’s mediation was different when questioned. This absolutely impressed the patient.

When a doctor came in to see the patient he chatted for awhile and then went over to examine her. As he took out his stethoscope I asked him to please wash before the examination. He explained “I did wash but will be happy to do it again” He left the room and returned drying his hands telling us “don’t ever hesitate to ask anyone to wash their hands, we all should be doing it” He too really empowered the patient to speak up and be involved.

The small things like treating the patient with dignity, covering them up for privacy and pulling the curtain were there for the nurses but not for the physical therapist. The PT continually compared the patient I was with to the patient in the next bed “she walked today so you can too” or telling us what she did with the patient in the next bed the day before. The patient in the next bed had the same procedure done a day earlier so the two women got along well and shared their pain and concerns but it was not for the PT to continually talk about the other patient – within hearing distance. This was both disappointing and wrong.

What was disappointing was the lack of information available to patients letting them know it’s OK to ask, question and speak up about their care. The empty walls in the hospital could have had patient safety posters, hand washing notices or friendly reminders about checking wrist bands, checking medications or letting us know who is I charge. It was also disappointing that the nurse was rarely available on some shifts and when the patient had questions, the nurse would scoot in and out without answering questions. The patient was not terribly sickly, so these areas are just cosmetic on what seemed to be a good, sound health system.