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.