What is a Patient Safety Advocate? A Good Listener

Patient Safety Advocacy; Listen!

Listening can sometimes be difficult. We often think of ourselves as a good listener because we are physically present when someone speaks. But being a good listener and a patient advocate are very different.

As an advocate, we need to really listen and hear what the patient is saying and even feeling. When hospitalized, it is important to always have a notebook handy. Taking notes when the patient says something like “I haven’t eaten since noon yesterday” you will have that information available if the patient is resting and the nurse or doctor come in and ask “when was the last time the patient ate”?

When the doctor comes in to speak with the patient, always ask if you can stay. This helps keep the patient in control. Plan on taking notes as the doctor and the patient speak. The doctor will ask if there are any more questions. Ask the doctor to come back if he or she will be in the building for a little bit longer. When they leave the room, you will probably say that you wish you asked about………………. Write it down. When the doctor sticks her head back in you will be ready with any additional questions.

Listen for the patient’s worries and fears. Try to never say “don’t worry” it’s confusing to hear those words. “How can I help you to not worry?” or “what will make you feel better?” can be words that are not only more soothing, but more productive.

The patient may have underlying fears that you aren’t aware of. Help the patient to find them and address them if they can. The worries may not be about the surgery itself but may in fact be about the bills, children at home or lost time at work. By saying “don’t worry” you aren’t helping to address any of that.

Finally, listening is also about hearing what the patient says. Don’t push the patient to eat or drink if this is not your role. Be careful not to treat an adult patient like a child. When the patient says I’m not hungry and refuses to eat, this information goes back to the nurse or doctor. Usually sipping water or juice is fine. By pushing a patient to eat is to satisfy your own need to feel productive, useful or even in control. Be careful to not cross that line. You are there for the patient’s comfort and safety and not to be in control of the patient.

What is a Patient Safety Advocate? Helping the Patient Understand Their Care

Patient Safety Advocacy; The Patient Needs to Understand Their Care and Treatment

I have been invited to a few hospitals recently by the patient and / or family because of a similar trend that seems to be growing. The patient has no idea who is in charge of their care. The patient is getting mixed information from different doctors, none who seem to be in charge. Treatment is often contradictory. One doctor may say to get off a medication, another says to stay on it.

I have been asked to come help sort this out. I can see, usually with my first conversation, that there is a disconnect – it’s throughout the whole system. Here is a typical conversation I may have with the first person I turn to, the nurse in charge of the patient:

“Hello, my name is Ilene, I am a friend of (name). (Name) is confused about who her doctor is in charge of her care and has some questions. I’m wondering if you would have some time to talk to her and answer some questions.”

“I’m sorry, I can’t give you that information”.

“I did not ask for the information, I asked you to talk to the patient”.

“Who are you” they would ask again even though I told them I am a friend.
“I can’t give out any information about the patient”. Again I would have to repeat that I don’t want the information. It's for the patient.

Do you see a pattern?

At one visit, at a local nursing home, I had this conversation with the social worker. When she wouldn’t budge, I went to the director of nursing. He called the social worker after hearing my frustration. He couldn’t believe that the social worker wouldn’t budge. So, the nursing director followed me to the patient’s room to assure her that someone would be in the next morning to discuss her care and answer any questions.

Yes, I see a pattern here.

Make sure you use your words appropriately and say what you mean the first time.

What is a Patient Safety Advocate? Quiet!

Patient Safety Advocacy; Quiet!

A dear, long time friend of mine told me her husband was going to have surgery. It was pretty serious surgery that meant many days in the hospital recuperating. Any time anyone spends many days in the hospital, we can assume it’s pretty serious. Insurance companies just don’t pay to keep people in the hospital unless it’s really needed.

I offered, like I offer most people I know, to help. I would be her eyes and ears for her when she’s not there, I explained. I would check that he’s getting the correct medication and that he is comfortable and cared for by the staff. “Oh no” she told me, “I’m a bull”. I told her that I am not a bull. I become a partner with the medical staff. She backed down and explained that she speaks up for her husband. Demands he gets what he needs and is not afraid to make waves.

More power to her.

She called me the night of surgery at 6:00 pm. She was home, exhausted. Her husband was fine and resting at the hospital – alone. She decided to go home so he can rest. I bit my tongue and said a prayer.

This is where advocacy starts.

Being a patient’s advocate is not about talking to the patient. As an advocate, it is important to be able to sit quietly and read (find your own light not over the patient’s bed), or be quiet doing something else. The patient MUST rest. It may mean sitting outside in the hallway and follow the nurse or doctor in when they arrive. The patient should never feel that they have to talk to you or entertain you. There is no reason that family or friends should visit the patient soon after surgery. This is an important time for the patient to rest. The advocate can ask the patient about screening calls so the patient doesn’t have to talk. Now, with texting available, the patient can respond when they feel well enough to but still read their messages as they come in.

When the patient sleeps, the advocate may need to make sure the patient isn't rubbing or scratching under bandages following surgery. Keep the patient’s hands clean with antibacterial gel if possible.

Wipe down the bed rail with antibacterial cloths when the nurse leaves or the TV remote or nurses bell after each use.

These things can all be done and should be done in the quiet without disturbing the patient.

In patient safety, there is a spoken and unspoken “rule” that we are not supposed to blame the people who make errors. There is a system, in most cases that causes these errors to occur. This is known as the Swiss cheese model. This term is used regularly to explain how errors happen.

Because there is usually a system break down, where the error is not caught, if it makes it through the holes in the Swiss cheese, it is not just one persons fault. Therefore, we couldn’t possibly punish (suspend or fire) an employee who causes harm to a patient.

On my way back from the airport, following a 1 ½ day patient safety meeting, I was surprised to hear on the radio that the Secret Service agents who allowed a couple to crash President Obama's first state dinner were suspended.

In the newspaper today I read that Secret Service Director Mark Sullivan said it was “human error," which allowed these unknowns to intrude. For this, three men were suspended.

Although I am not advocating firing or suspending someone who makes an error, I’m just wondering why I am seeing this as a bit controversial. Care to comment? Please do.

Long Island Transgender Day of Remembrance November 2009

I was honored to be asked to speak at the Long Island Transgender Day of Remembrance this week to one of the warmest and most wonderful group of people I have ever known. Below is what I said:
Long Island Transgender Day of Remembrance
As presented by Ilene Corina
November 22, 2009

A young man with a face of innocence hands a written prescription to the medical receptionist that he is in need of an internal sonogram. She questions him in front of a waiting room full of patients. Embarrassed he leaves, never to get the care he needs.

A man in need of an EKG is told to remove his shirt. Because of his discomfort with his body given to him at birth he is embarrassed and confused. Why isn’t every man or woman offered a gown when disrobing any article of clothing? In this case, he has already avoided the gynecologist and mammography he so desperately needs in an attempt to avoid acknowledging his body. 

A 45 year old man is hospitalized following a hysterectomy and the doctor wants to put him on the post partum floor filled with women who just gave birth.

Bill wants to be called Jennifer but no where on the medical chart is there a place to have that information available. 

The first time I was asked to advocate at the bedside of someone who is transgender, I was determined to be sure the patient was kept safe from medical errors and treated with dignity and respect. But, an unauthorized hospital worker walked into the patient’s room who I was there to support and protect. My role was to make sure that didn’t happen. Every hospital worker must introduce themselves upon entering a room and state their reason for being there. But he got past me – my first experience that the same people who are supposed to help and heal the patient, bring their own curiosity and prejudices to work every day.

Every day transgender people avoid necessary medical treatment, dreading the inevitable and hurtful lack of sensitivity they may find in the medical community.

Hospitals are not perfect places. Every day as many as 200 people die in Americas hospitals due to preventable medical errors. More people die in hospitals from errors than breast cancer, AIDS and car accidents combined. And, just as many people, 100 thousand die every year die from hospital acquired infections.

The number one reason - is - that medical professionals do not use proper hand hygiene. We are expecting these same people, who won’t wash their hands before touching a patient to treat that patient with dignity and respect?

Every year as many as 1.5 million people are harmed because of medication errors. Medications being used for off label use, that have been shown to work - must be tested. Funding needs to be made available for testing so patients can be safe. 

Most hospital workers are the most caring people we will ever know. But some will go to work with prejudices and there must be screening - or at least sensitivity training. Medical and nursing schools need to work into their curriculum training in diversity – before healthcare providers ever work with a patient.

Today, we are in a remarkable position: policy makers and healthcare organizations are listening to the concerns of the transgender community and the country is showing an interest. But first, the people who understand the frustration of being treated with disrespect must band together. Advocate for each other. Form groups to stay close and speak up for each other when in need of health services, surgery or medical treatment.

A young man has an asthma attack and fears going to the emergency room because he doesn’t want anyone to know he wears a binder. To reveal his body would be more tragic than the struggle to breathe. A support system in place could be called to be sure he would not have to answer uncomfortable questions. 

As a trainer in patient advocacy we work on respect and communication skills. 

No on can presume that they know how to treat someone with different needs if they have not taken the time to listen, hear and learn what those needs are. 

There are needs as an individual and there are needs as a group. Together we will make sure those people who treat each and every one of you know what those needs are. I need your help to get us there and I promise to stand by your side as we get there - and have your needs met through policy changes and raising awareness from the top down and from the grassroots up. Thank you.

Advocacy

I get many calls from family members or friends who are planning to advocate for one another and want to know some tips or rules. Some just feel they would be good at bedside advocacy. They may want to make a living at being a patient advocate and to that I say “go for it”. It is an important need in healthcare and as many people who work in healthcare will tell you, don’t go to the hospital alone.

But, what makes someone good? I listen for buzz words during our conversation. When someone says they know what a patient wants, that can’t be true. We don’t know unless we ask. Does the advocate have certain ideas of what the best treatment is or do they have nursing skills? The advocate is not there to take the place of the nurse or doctor. The advocate is there to see that the patient’s needs are met.

If a nurse is the advocate and the patient does not understand the procedure about to take place, the nurse advocate may easily say “don’t worry, I will tell you later”. As a patient’s advocate, with no nursing background, I will watch the patient’s face for clues that he or she doesn’t understand. Then, I will ask the patient if they understand. If not, I will ask the doctor to explain it again.

It is easier for me to feel confident when asking the doctor to take time to explain. The patient is very often intimidated, scared or just not thinking. “Let the doctor take care of me. Why do I need to ask questions?” Wouldn’t that be so easy? And it can be. As long as an advocate is a strong partner, courteous and understanding, chances are the patient will have all their needs met.

I am excited that this Sunday, I will be speaking at the LI TDOR (Transgender Day of Remembrance). Not excited in a good way but just, enthusiastic. I have seen and heard the injustices that the people who are transgender have had to endure not just in the healthcare system but also at home and in their jobs. I have read the e-mails of angry family members who say things that are hurtful and ignorant. As a bedside advocate, I have seen how medical professionals ignore that a patient is called “he” and insist on using “she” even after being corrected. Now we will hear the names of many of the people who are killed just because they are who they are. Many others live with the pain put upon them because of who they are.

Kids can sometimes be cruel. But this isn’t about kids. I remember as a young girl in school the first time someone made fun of my nose. I can remember who said it, how it was said and where we were. It was one of my early memories of being ashamed of – me. I always felt too fat, too ugly and never smart enough. And, throughout my school days, I was, more than one time, reminded that that something about me wasn’t perfect. Yet, I never feared for my life.

I never felt that I would be embarrassed as an adult of my looks or fear someone would find out what was under my clothing. I couldn’t imagine, if I didn’t read the hate mail for myself , that adults can be so cruel. I would like to assume that these mean adults with hate in their blood live in a certain place or work in a certain profession but, just as we can’t always know by looking at someone if they were born male or female and have changed the way they present, we won’t know what kind of mean and venomous thoughts and ideas go through someone’s head when we meet them.

Hopefully, events like TDOR will inform the public that transgender people are real, may be your friends and neighbors and may actually end up in the bed next to you if hospitalized. But, where ever you meet someone who is transgender I am certain they will not think less of you because of the way you look and will not judge you or let you judge yourself. For the first time I feel just fine, just the way I am.

I hope you will come, if you can and learn about this group of people with open hearts and open minds.

Advocate 24 /7?

I recently gave a presentation at a Midwestern hospital to a group of nurses. The topic was critical and compassionate communication. I was prepared with some role play to use following some brief training in listening skills and recognizing the feelings and needs of the patient and / or patient’s family. The idea is to connect with what is happening with the patient and family and not concentrate so much on the words being said but more how they are being said.

A family member who sounds angry and spews hurtful words at a nurse who is already tired and also anxious may be coming from a place of fear and not anger at all. A search for those feelings and recognizing that the words are not actually meant to hurt the listener, but instead a call for understanding and acknowledgement that the patient is scared and feels lonely.

We addressed briefly family members who insist on staying over night which often causes communication problems. I suggest, in my family centered patient advocacy training that the advocate or family advocate learns ahead of time the policy for overnight guests. Usually, I have found there is not a set policy but it is left open so the hospital can ask a family member to leave when their stay is not benefitting the patient.

The nurses at this hospital, in the Midwest brought out that they do not allow family to stay overnight. It is privacy issue to the patient in the same room.

If I were the patient in the room I would not want the husband or another family member in there. But, then I had to question; what is the point of the “advocate”?

Are errors not made at night or early in the morning? Does the roommate not need privacy during the day?

I don’t have the answers, but sometimes, only more questions.
Thoughts?

Who is Bruce Braley?

I never heard of Bruce Braley before this week but now his name is all over the internet, at least if you are involved with patient safety. Braley, a Democrat from Iowa recently stood up for patient’s safety in Washington DC. A newly elected congressman from Iowa, Braley spoke openly and honestly with facts at hand about the problem of medical errors and the high cost to the economy. His vocal concerns, all caught on camera are now going to make him a hero with patient safety advocates across the country. Watch and see for yourself here; Bruce Braley Healthcare Debate

This is part of my on-going series about Family Centered Patient Advocacy

I enjoy health fairs. It is a place to network, see what’s available to others and share our own information. NY State Senator Kemp Hannon holds a senior health fair each year and we are invited from PULSE to set up a booth and distribute literature. At Hofstra University each year, it is comfortable and busy.

There are many people who come to our table and say things like “have I got a story for you” or “this is exactly where I need to be”. No matter what your ailment is, there is a story that goes with quality health care or lack of it……

Patient stories are not just about wrong surgery, infection or misdiagnosis. There are stories about the complications of just navigating the needs of the patient. Each time we tell a patient to make a list of questions, medications or doctors names and phone numbers, we are giving them more “work” to do while emotionally and physically drained due to illness or injury. As a friend or family member there are things very specifically you can offer to do and ask them the following questions:

• Do you need help making calls about insurance?


• Can I help you make a calendar for your appointments and list all your doctor’s names and phone numbers?


• Can I help you choose a doctor?


• Do you need equipment ordered, returned or fixed?
  

All these things take time and by offering your time to help with a small piece of their chores, you are can help, where you can.

A young woman at the fair was with her mother in a wheelchair. The young woman was upset because she was delivered the wrong piece of equipment for her mother. Taking care of an elderly parent is hard enough but when things go wrong, it would be nice to have someone to just ask “can you find out about returning this piece of equipment for me”. This chore can be emotionally draining for the young woman, and impossible for the disabled mother but may mean only 30 minutes of your time to help.

Being an advocate for a family can be just as rewarding as being an advocate for the patient. As an objective partner you can listen and help in decision making and during stressful times and take some of the difficult and time consuming tasks away to help.

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.

I received numerous copies of an editorial by Michael Cohen, President of ISMP. I like and really respect Michael. He is a smart and caring man and an advisor to PULSE of NY. But

I don’t want to respond to the individuals who are asking my opinion about this article. I don’t share the same views as other advocates. For that, I have lost many people over the years who I thought could have been long time friends. I don’t like to comment on individual stories because you can bet we will never get the whole truth – and nothing but the truth.

Michael Cohen wrote about a pharmacist who was jailed because of the death of a young child. An Injustice Has Been Done; Jail Time for an Error was written in response to the Ohio pharmacist who caused the death of a little girl. I can relate first hand to the parents anguish at having a child die BECAUSE of the medical treatment the parents trusted for their child.

I too thought of jail - or worse for the doctors when my son died because of his medical care, but in truth that wouldn’t solve anything. I would like to see those involved do community service with me, taking some of the calls I take or running a support group for people who lost a child from medical care. I would like to see this pharmacist do community education about medication errors and work with the community to teach patient safety information. I just can’t see jail time.

Even if this pharmacist was lousy at his job, had a bad attitude or was overtired, how will jail time fix that?

What should we do with someone who is driving and the sun gets in their eyes and they kill someone. How should they be treated if the family is angry and grieving but the driver stuck around to take responsibility? When someone is killed and no one takes responsibility, and doors get closed instead of offering empathy and answers, the family of the injured or deceased have every reason to be angry, and that anger will fester until the family becomes obsessed with grief, anger and revenge – and rightly so.

Unfortunately, we will never know all the details of this case but unless some good can come out of a medical professionals going to jail, I would like to see everyone make better use of their time.

I had the opportunity to hear a panel speak on healthcare reform. There were 4, obviously very knowledgeable people about the proposed legislation to give all Americans medical coverage. Unfortunately, I had to leave early; my lack of sleep from travel was catching up with me.

One speaker addressed the bill directly and he shared the information that made this bill work for him. He spoke for 15 minutes and told the audience of about 100 people what he wanted us to hear. Of course there was applause following his brief presentation.

I thought to myself “what is he leaving out”? Because I haven’t read the information that he read, I can’t fairly comment on the content. What about those who do have the time to read it, analyze it and understand it? How will we ever know if we support something if we don’t read it? It sounds good when we are told about it. But we can’t possibly be confident that we know the whole story.

Obviously I feel that medical coverage for everyone in America is important. Just as we count on our children’s education and the police will be keeping us safe, I want to know I can go to a doctor when I, or my family are sick.

I didn’t have a choice of teacher who would be making an impact on my children’s life in school. My children spend a year with their teacher whether I like them or not. We take our education for granted sometimes. I wonder if I would be willing to use a doctor if I had little choice who he or she was, because they are paid for by the government. Isn’t this what veterans do? Do they have a choice of doctor when they use the veteran’s services?

I worked hard to get legislation passed in NY for physician profiles. We can check our doctor’s background. But, it’s self reported and may not be accurate. But we still trust the information. I used this information to choose a doctor but have also used doctors because someone else recommended them. When we go to the emergency room everything changes; you get who you get.

How much would we be willing to give up or can we be flexible at all to allow healthcare coverage for every person in this country? Maybe we, the citizens should be thinking about writing our own healthcare reform bill and make it understandable.

Making Meatloaf

Sharing information between medical professionals and patients and families is similar to sharing a meatloaf recipe. We can request the recipe from someone for their delicious meatloaf, but if they don’t share the recipe in detail, every detail that we need to know, we won’t get the same outcome.

If even one item or description is left out (how much bread crumbs, how large an onion or what cut of chopped meat), then the recipe will be incomplete and the outcome will be different.

The information being shared, and being heard, is filtered through 3 basic areas: Trust, Expertise, and Life Experience.

Trust is how much you can believe or count on someone. As the listener, you decide whether you can trust someone. Trust that the information is accurate. Trust that the information is complete. We even trust in ourselves that we have all the information we need without checking further.

Expertise is the knowledge that we each have about a particular subject. The listener may have expertise in an area so they do not pay close attention to the speaker. For example, an early childhood specialist may be a fine teacher but not know about childhood diseases.

Life experience focuses on your past experience. Have you been diagnosed with the flu in the past so now you may not listen carefully enough to what the doctor is saying to do for these symptoms? Or, perhaps the doctor treated a patient who has been noncompliant in the past, so now he spends less time with that patient.

By recognizing that we are filtering information constantly, we can avoid missing important information by being sure that what we say is being heard accurately. We can ask the doctor to repeat back what he heard us say. And we can repeat back what the doctor said to us.

A medical professional can easily miss a diagnosis if we forget to share all important information. The healthcare professional should repeat back the symptoms we have told them. The same goes for what we have heard them explain.

What time of day to take the medication and how many pills need to be taken at once can mean the difference between a positive outcome and one that has disastrous results.

So next time you get information from the medical professional treating you, or whether you are sharing a meatloaf recipe, be sure to repeat back what you “think” you heard so the outcome is what you want.

Working on my fellowship for the American Hospital Association and National Patient Safety Foundation Patient Safety Leadership program I have been given opportunities to read some of the very interesting information about patient safety I would have otherwise passed over. I am reminded about the history and the studies that have been done over the years. Patient safety is a topic so near and dear to my heart. I am one of the very few people lucky enough to turn a “hobby” into a career. Of course the pay sucks but the work is very fulfilling.

Reading articles written about making a business case for patient safety is a reminder how bad the problems really are in healthcare. If information has been studied, measured and implemented in one facility, why aren’t other medical institutions following this same process? If it works in one facility, why aren’t they all doing it?

Maybe because they haven’t read the same articles I am reading. They have to find this information out for themselves instead of some organization saying “here’s the way it should be done”.

Hopefully now with the Joint Commission’s new Center for Transforming Healthcare we will start to see how best practices can be learned and followed.

There are 2 very important roles to being a useful and productive patient (safety) advocate. One is being objective and one is being a good communicator.

Being objective means that you allow someone to make their own decisions. Words like “you have to” or “you need to” does not make for an objective participant. Words to get the same results can be “have you thought of….” By telling someone what they “have” to do takes the power away from them. Telling someone what to do can also cause push back from the listener. The first thing I think of is “no, I don’t have to”.

As an advocate, we want the patient (or even the patient’s family) in control. We want them to make decisions but have all available resources.

As a good communicator, it may mean not talking and just listening for long periods of time. No one cares about your broken foot or gall bladder operation. It’s not about you. Practice not talking for a while. Don’t ask questions or change the subject. Just listen. Search for the feelings of the patient. Are they scared, confused or angry? Acknowledge these feelings and don’t run away from them.

Allowing patient’s to share their feelings and not bury them can help them move on and concentrate on other issues. Storing their feelings of anger for being injured, or scared about their recent diagnosis blocks them from hearing important information or from recognizing other things around them that they need to know.

I have to admit, it is exciting to be chosen to Modern Healthcares Top 100 Most Powerful People in Healthcare but I’m not sure what the responsibility means.

First, you should know that I am a big fan of Modern Healthcare. The writers of this weekly magazine actually call for my opinion and return calls if I reach out to them. Unlike less popular and “snooty” papers, there seems to be real people working there with manners and courtesy to their readers. I am impressed with any professional writer who asks my opinion because I have not been trained in “political correctness” and very often state my opinion on a topic that may not be what the paper, nor their readers want to read.

I have quoted Modern Healthcare on occasion to my colleagues because I do believe they do their homework. When the information I am sharing about an article I read is not satisfactory to the person I am speaking to, they have gone so far to say that the magazine is not worthy of their time. On the other hand, they too read the magazine and at times been featured in it.

I remember saying to the CEO of a very popular hospital, at a meeting that I was surprised his hospital was not listed in a top hospitals article in Modern Healthcare. He asked to see the paper and after reading it, mumbled something about the magazine being garbage. One of his colleagues asked me what I did to get him so angry. I assume if his hospitals were listed, the magazine would have been a treasure.

This year, Modern Healthcare writes that there were 25,700 names submitted to be the Top 100 Most Powerful People in Healthcare. Nearly 52,000 people voted on the top choices. Out of those 25,700 names there are probably 25,600 who think Modern Healthcare is “garbage”. Probably, many the same people who thought it was a treasure last year when they were featured .

What now? Will being in the list of Top anything help our cause? Will people listen? Will we really be able to change things or make the world a better place because we are listed in the top 100 of anything?

As the president of a grassroots patient safety organization, my roll is, in part to get publicity for the organization and our cause. This is rarely done. PULSE of NY does almost no advertising because of our size and small budget. For that alone, being featured in Modern Healthcare is wonderful . The many letters and e-mails of support I received, many labeled #76!, helped me hear from people I have not heard from in years.

Although I am sure this list won’t suddenly make the world better and may not even open doors, it surely couldn’t hurt. I am grateful for those who voted for me and Modern Healthcare for holding this contest (until, of course I am off the list)

The situation in a hospital is not that a patient should never be left alone, but that the patient’s family should not have to be alone either to deal with the emotional stresses of having a family member hospitalized for a serious, or even a non-serious ailment.

I wouldn’t say there should be a third party around the bed 24/7. That’s just not realistic. I am saying an “advocate” available to the family, not affiliated with the health system is needed. That’s where I come in.

Recently I went to visit a 97 year old woman in a rehab center / nursing home. Her mind is as sharp as someone half her age but she is in rehab following a fall at home.

Her grandson told me her call bell was not working. He has asked for it to be fixed on numerous occasions and each time a report is filed, someone comes in and changes the cord, it works and they leave. Immediately following the “repair” it doesn’t work again.

A 97 year old woman who is considered a fall risk needs a call bell. This is a serious safety issue – period.

Unfortunately this lovely woman soiled herself during the night when no one was answering her call bell, that didn’t work. This angered the family, no doubt, even more.

By the time I arrived, the call bell was changed about 3 times. The family was angry, or so they should be, we now had a dangerous situation; Grandma could easily get up and fall.

When I went to the nurse’s station to report this hazard, I was told that a report will be filed. I wanted to see someone in charge. Soon I was face to face with the person in charge of maintenance. Together we went to grandma’s room and the box was pulled out and replaced. It was a short in the box in the wall. Obvious even to me.

Why did it come to anger and danger when it could have easily been looked at as a problem after the first time the call bell stopped working again? The nurse in charge would have allowed it to continue were I not insistent that someone in charge get involved.

What is also troubling is that the "Director of Plant Engineering', the gentleman who accompanied me to the room, did not know about the numerous complaints. He thought he was not responsible because he didn’t know – but why didn’t he know? What is the communication breakdown that allowed this to go on for so long?

According to the Agency for Healthcare Research and Quality, falls account for 70% of hospital accidents. Effective October 1, 2008, Medicare and many state Medicaid agencies no longer reimburse hospitals for costs associated with treating injuries incurred by patients who fall while hospitalized.

A study of people age 72 and older, the average health care cost of a fall injury totals $19,440.00 according to the Center for Disease Control and Prevention (CDC).

It is therefore my opinion, we may have saved this facility almost $20,000.00. Something to consider when they say they have no funding.

I’m finishing up my last minute packing for my business trip to Hawaii. Before you think Oh boy, she’s got the life, let me remind you I added the word “business” in the last sentence purposely. I do not get pleasure, nor do I seek pleasure in my business trips. You may think that I should, but you are entitled to think what you want. Very few people understand why I feel this way.

I remember years ago I was invited to go to a beautiful Caribbean island to speak in front of a group of pharmacists. I had to get my passport. The planning was longer than I would have liked and the flight (although not nearly as long as Hawaii) was also longer than I would have liked. It was a constant reminder that this is not what I would have planned for vacation. Still you might think - enjoy it while you're there.

During that trip years ago I flew in and arrived at 7:00 pm, enough time for a networking dinner and by 11:00 am I was on my way back to the airport. I love the Caribbean water but never went near it even though it was only yards away. To dip my feet into the beautiful water, or sit on this beautiful sand, would be, for me, a disloyalty to all the patients and family’s I am doing this for. How can I enjoy the ocean, a sunset or the sand when the reason I am there is because people are dying every day from preventable medical errors?

It may be a form of post traumatic stress that is just now becoming recognized following a medical injury. I live with the death of my son daily not just because I do - but because I have chosen, and been given the opportunity to share his story and other stories so I can help make a better and safer health care system.

It could be that I am just a loyal person to this cause or, it could be that I just don’t know how to have a good time and “lighten up” as some folks have told me. But it is very personal, and very important to me, as an individual, that I remember why I was given this opportunity to travel the country and share the tragic stories of those who passed on, or suffer today because of medical injuries. It is not to swimming, sunbathing or having fun – although this time I did pack a bathing suit.

I spoke to Patty yesterday (names are changed). We spoke a few years ago and then lost contact. Her story stayed with me over the years because it is sad and painful but so real.

Her husband was seriously damaged during surgery. He was a businessman she, a businesswoman. They had careers, a home and close family. Following his injury, she became his caretaker and he lost his job, she could barely work and they became poor and lost their home.

When I speak to her, she could be anyone of my friends or family members. Patty is educated and articulate – but she is one of those in the “system” that has failed us as patients.

She waited too long to sue. Her husband’s injury and caring for him consumed her. They expected honest answers from the doctors and hospital. Her husband worked for the hospital. He ran a department. The hospital denied any wrongdoing but still, he went in for treatment and came back an invalid, unable to care for himself, in a variety of ways.

Patty is still angry and feels obsessed with telling her story. But, all too often no one wants to hear it. How can she sound reasonable with all this anger and grief? Now Patty tells me she fears she will die before her husband; no one to care for him and no one to tell his story. Her health is failing and she has years of research and documentation of her husbands care and treatment and why it was inappropriate. She wants to know what she should do with it.

I hear stories like this and feel like a failure myself. How can I help her or others like her? I probably can’t. Can I help others never to be in this situation to begin with? I just don’t know. Do I want to be in the center of the pain and turmoil Patty feels? Yes, I do because it is the reason I continue this work.

I sometimes wonder where I can go with this but hopefully someone will read this with ideas. There are just too many Patty’s out there.

12 in a Room……..

What do you get when you put 12 strangers in a room for a week, from each part of the country, (and Canada) with different backgrounds, different educations, different lifestyles but one passion – to make healthcare safer? You will probably get - safer healthcare.

This has been my experience this past week in California as I begin my year long journey as a Patient Safety Leadership Fellow at the American Hospital Association and National Patient Safety Foundation training. Using our own project to make patient care safer as an anchor for our work, we spent 4 ½ days bonding as we learned about “Gracious Space” which focuses on sharing information and accepting other's differences. We did team building that made us laugh but also recognize our own leadership skills and lack of them and we learned about each other, and how each of us are interested, in our own way, in making patient care safer which will not only improve care – but save lives.

It was an eye opening experience and the people who I have grown to adore in just a few days are all so different I have to wonder if this was planned. 11 women and a young male doctor who many of us began (s)mothering almost immediately. One Fellow with a contagious sense of humor, another with an infectious laugh and smile, another with a more serious side that is built upon years seeing the worst in healthcare. One who seems a natural mom and caretaker and another who is quiet but has an obvious charm and gentleness.

These personalities are as different as their (our) work and projects. In the year to come, we will each touch our community or healthcare system and begin to focus on the missing piece we each see as a need for our intervention in patient’s safety.

I look forward even more now to the upcoming year, though I don’t see it an easy year following our first in person meeting. I know it will be a difficult time but am committed that through this fellowship, I will make healthcare safer here at least on Long Island – if I have anything to say about it – and now I do.

Here it is again – July. According to the best selling book “You the Smart Patient” by Michael F. Roizen MD and Mehemet C. Oz, best known for his appearances on Oprah, midsummer is the worst time to check into a hospital. July is when hospitals are “crawling with newbies” and the least experienced physicians. We should “give them a few months to break in” the book tells us. Gee, thanks for the warning us (on page 33 last paragraph)

Any wonder we celebrate Patient Safety Day in July? July 25th patient safety advocates throughout the country and around the world are connected by a few moments of silence at 6:00 PM. We remember those who have lost their life because of their medical care or their life has been changed forever – the survivors as I like to call them.

Although I don’t want to fear for those poor souls who must use the hospital system in July and August, I do know of many deaths which resulted in medical injury. I am saddened each year around this time even though it doesn’t coincide with my own, personal loss. Unfortunately, there seems to be very little we can do about this except be sure the patients, or potential patients know about this dangerous time to be hospitalized.

I am often saddened by the knowledge that is not being shared that people are more likely to be injured or killed in July. (Not my information, read my friend and colleagues blog) Patient Empowerment Blog . You can’t make this stuff up.

Seems simple enough to fix – no? Last year we held an emotionally charged event on Patient Safety Day; A tribute to the lives lost and changed forever. This year I will be heading back from California on July 25th where I start my patient safety fellowship. But you can rest assured I will be thinking, at 6:00 PM about those who could not be with us today.

I recently received these wonderful photos of the “Fountain” at the National Patient Safety Foundation Annual Congress. It may, at first just look like a fountain but it is much more. It is a place that people who have suffered the loss of a family member, friend or a patient from a medical injury can put a flower in and spend time reflecting, hoping and wishing for the things that bring us all together – patient’s safety.

Anyone can come buy and put a flower in the fountain representing the loss of life or quality of life because of medical care.

The fountain won’t be found at other conferences but NPSF continually remembers the patients and hears the patient’s voice through their work.

The fountain is one of those things that makes NPSF special and makes them different than other organizations. It’s not inexpensive and doesn’t add to the educational aspect of the yearly congress but it surely does add to the humanness of patient safety and the reason we all do this work.

Brown Bag It New York

Over 95 community residents were able to spend as long as 40 minutes each with a pharmacist and group of pharmacy students at PULSE of NY’s first “Brown Bag It” event.

Held at the Freeport, Long Island and Wantagh Libraries in partnership with St. John’s School of Pharmacy, members of the community were able to pack up all their medications, vitamins and herbs and bring them in to meet with a pharmacist and have their questions answered – and they sure did!

Patients were encouraged to spend time with faculty and pharmacy students during individual, private consultations learning about their medications. Participants were helped to list their medications on pocket cards and heard about the possible side effects, generic alternatives and the importance of knowing what they are taking and why.

Pharmacy students saw how patients, mostly seniors, often self medicate, often do not know what side effects they are experiencing and don’t ask enough questions or have enough time with their pharmacist to learn about their medications.

Together, the students learned about privacy and including the family in the discussion and when it may, or may not be appropriate to include the patient’s family member in the discussion about illnesses or medications. They also learned about keeping a relationship professional when working in your community.

Kyle Schuessler, a local volunteer paramedic with the Wantagh, Levittown Ambulance Corp took blood pressure as patients waited and spoke about the importance of keeping their medication list on them at all times. Explaining that an ambulance crew can often learn what medical condition an unconscious patient has by their medication list.

Brown Bag It

How many people who are taking 2, 3, 4 or more medications would love to sit down for fifteen or thirty minutes with a pharmacist and just ask questions about the medications they are taking, the possible side effects they may have or, if there is a cheaper, or equivalent generic brand worth exploring? Chances are, many of us would like that opportunity to sit with a pharmacist but may never get it. Not until now.

We held our first “Brown Bag it” event with PULSE of NY and St. John’s School of pharmacy at the Freeport Memorial Library this past week.

It was wonderful to see young people wearing the lab coats escorting community members, usually senior citizens some with their walkers, to a table so they could spend time connecting and communicating. Joined by faculty, the pharmacy students, first, second through sixth year sat and listened and absorbed what the patient’s questions and concerns were and how their professor would gently pry information out of the guest and learn what their questions were through gentle, compassionate conversation.

One gentleman learned that the ringing in his ears, for the last five years may be because of the high does of medication. A few people brought bags, often more than one, filled with medications to show the pharmacist. Others brought their lists or the lists of family members.

While checking blood pressure the conversation would go to medications and medication safety for the guest or their family. More intimate settings were developed while taking the guests blood pressure which made for more informal discussion.

Some pharmacy students even got to practice their Spanish making the room more cultural friendly.

I am grateful for these opportunities where we can empower patients with information and making health care, patient safety and medication use less intimidating.

If you would like to join us, our next "Brown Bag It" is June 22, 2009 at the Wantagh Library.

Organization of the Year

My mom handed me the beautiful cut glass statue which was awarded to PULSE of NY from the Long Island Women’s Agenda as their Organization of the Year.

The statue is wonderful and the recognition is heartwarming, but there are two things that struck me.

One is that we had a table of representatives and volunteers to take the credit for making PULSE of NY successful. I could not be there but wanted to. I woke up so sad that morning that I could not be there at the dinner but instead, was traveling and speaking at a medical conference to try to help those who work in healthcare understand the importance, and how to include the patient and family in patient safety. Finally, we are being recognized in our own community and I couldn’t be there. But thankfully, our hard working support system is taking credit for what they do.

Second, are we finally giving patient safety a voice in the community? A local, Long Island organization, with over 65 members now know that patient safety is being addressed in their back yard?

I love to speak about patient safety and share what I have learned by working with the experts in the field, but I have been saddened that for all the years of work put into it, I don’t feel any safer in my own community health system.

Simply put, a nurse did not wash before touching my son yesterday. When asked to, she said she did already. I told her she touched the door knob to get in (I knew because he wanted the door closed and I thought about the door knob) and she touched the pen, clipboard and before I could keep going, she said “Fine, I’ll wash again”. My son proudly told her “my mom is into patient safety, as a matter of fact, her organization just won an award”.

While washing, the nurse practitioner, in training, asked me some questions about what we do, and I told her briefly what we do. Why should it matter? Why can’t they all just wash?

"Will's Story" Cont.

Will has worked for many years in health care in a major New York hospital. He is a paramedic and has a lot of experience working with people. He is a great listener and hears what is being said and is sensitive to people’s feelings. Will is a pleasure to be around. But he is also sensitive to when people don’t listen to him.

Like all of us, he wants to be heard. As a patient in the hospital, it is even more difficult. As the patient’s voice, I am not there to make the decisions for him, I am there to see that his needs are met, he is kept safe from harm, and he is treated respectfully. Unfortunately I can’t promise anything.

We went through the basically uneventful day with the nurses asking me if Will was a “he” and I was grateful he didn’t know they were asking. His chart and armband read F for female so it was good that they would ask. His facial hair, deep voice and masculine look couldn’t be mistaken for a woman, but no one really wants to make that mistake. “Good, I pass” Will would tell me.

The nurses and aids were gentle all day and I waited until the night shift to meet the new team coming on. Will was taking his medication, walking and doing everything he was supposed to do. Will is a good patient. The incentive spirometer, he would blow into to keep his lungs clear was within reach and he used that often too. Moments after Will used it and placed it covered, to keep clean, on the night table, a large man of about 50 came in dressed in white scrubs and was introduced as the night nurse. Towering over Will’s bed, Dan exchanged some pleasantries, asked Will about his comfort and pain and reached for the spirometer.

Uncovering it, I said “please don’t uncover it” Will said “I did it, leave it alone” but still, Dan, the night nurse insisted on uncovering it to show Will how to use it. I felt my heart sink and saw the expression on Will’s face. Complete lack of respect for the patient’s request.

When Dan left, Will and I looked at each other. I failed to protect his needs. What was I there for if I couldn’t protect him from something as simple as having someone touch his things? Should I have wrestled Dan to the ground? Should I have screamed and yelled at him “STOP”?

Will and I spoke about his feelings of not being listened to. He has had this happen before and it is part of the life of a transgender man. We wondered if Dan too was uncomfortable knowing that he would be the nurse for this man that may confuse him. But a nurse, in a hospital, can this really be an issue?

It made me rush back early in the morning to be sure Will was treated well over night. I was there when Will awoke and he told me that Dan was special. A conversation later with Dan helped me understand why he was so special. He is new at nursing, only 3 months. Retired from the police force and ran a department in New York City for years. This man was a gentle giant who wanted to do the right thing. In his past life, he was used to getting what he wanted. It was survival. But now, at the bedside of a patient who has very different needs than others may have, how could we make him aware that the patient, in this case Will, needs to be in control or at least shown respect of his body, and his possessions.

The morning went well and Will and Dan got along wonderfully. They had more in common than they realized at first.

Unfortunately, in real life or at the bedside, we don’t know how to make our needs understood in the first seconds of meeting someone. Maybe we all have to slow down and take the time to learn them.

On My Own

This guest post was submitted by William following his surgery and is part of a series of posts about his hospital experience.

As my surgery date neared, all my fears bubbled up. How would I explain to those people taking care me how different I am? Will they be able to understand and respect those differences? Am I going to be the patient they are all talking about on their lunch break, or when they are home with their families over dinner?

The more I thought about my concerns, the more I knew I needed someone on my side to help me answer questions and demand the respect and compassion I deserve as a human being going through any medical procedure.

I knew I didn't need help with infection control, or understanding what was happening to me. I had enough background as a Paramedic and hospital technician to cover those areas. But I knew I would need rest and I knew I would need privacy. I knew staff charged with taking care of me, by nature of the surgery I was having, would naturally refer to me using female pronouns. What I needed was someone there to help me with that. I have always found it stressful when someone used female pronouns in reference to me, even as a young child. Since my transition began, that has happened less and less, and I am happy to be living my life as the man I am now.

Thankfully, what I needed is Ilene's work. She has turned her own tragedies into efforts that have improved the outcomes for many, and quite possibly avoided more tragedies from happening. Ilene offered to be my patient safety advocate, and I gratefully accepted her help. She sat vigil by my side the day of my surgery.

Communicating with staff was easy with her there. She told them all I am a man and I never had to deal with the stress of explaining my masculine appearance to anyone. Even though medicine hasn't completely caught up to the idea of a female bodied man, the staff at the small community hospital, because they were educated by my advocate, were respectful and courteous. They always used male pronouns with me and afforded me the privacy I needed.

It was only after Ilene left that anyone questioned me about who I am:

I was walking around the unit, and as I turned the corner a young woman was walking out of my assigned private room. I commented,”You must be looking for me.” “Maybe,” she replied hesitantly. I put my arm forward to show her my ID band. “I'm Will.” The young woman told me she was from the dietary department, and she is a nutrition student. She asked how my appetite was, and if I had any special dietary needs or requests. “No thanks,” I replied, “I am eating well.”

With that she nodded and then a perplexed look spread across her face. Her face became flushed, and she posed the question in the best way she could: she was doing her job, ensuring she had the right patient. I sensed her embarrassment as she spoke,” I'm sorry, may I ask you a personal question?” I nodded and braced myself against the wall in the hall. “Are you a woman?”
“No, I'm a transgender man.”

Later that day, my catheter was removed, and the nurse had asked me to urinate into a “hat” placed in the toilet to keep track of my urine output. The hat was full, it was change of shift for the ancillary staff, and I needed to empty my bladder. I pulled the cord in the bathroom. Staff quickly responded. I asked the woman if she could empty the hat for me and be sure to record my urine output. She donned gloves and emptied the hat, then tossed it into the trash can. “Here we go again, I thought,” as she pointed to the urinal bottle hanging in the bathroom, she explained I could use the bottle. “No I can't,” I tried and was interrupted. “Yes go ahead and put it in there, OK?”

“No, I'm a transgender man. I am female bodied. I cannot just put it into the bottle, I need the hat.” She never replaced the hat. No one ever asked me about my urine output.

She didn't listen to me. Maybe she knows Pink Lady.