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.