Thursday, May 26, 2011

Patient Safety and the Disabled Patient

The Disabled Patient in the Hospital

When I received the call to visit a patient at a local, Long Island hospital, I was confident that this wasn’t going to be a simple visit. The patient I was going to see was someone who couldn’t use her arms or legs. Completely disabled, she was living in real time the stories I have been collecting about how people, with disabilities are treated and feel unsafe in the hospital.

She had her personal care assistant with her. In most cases Medicaid or insurance will not cover a home health aide once the patient is admitted into the hospital. The hospital is supposed to care for the patient. In this case the aide, caring for the patient for over 10 years, told me she is not leaving her - with or without payment. God bless her.

I gave her aide some much needed time off to get a bite to eat and sat with the patient to talk about why I was called. She started off telling me about being admitted. She had the symptoms of pneumonia. Because of her size and the lack of equipment to move her, she was not given a CAT scan that the doctor’s felt was needed. She did not want untrained people attempting to lift her. If she began to fall she could not stop herself, she could not protect herself. I could only just imagine the fear this would bring to someone with her sharp mind and to a woman who has knowledge of her needs.

On two occasions she told me, before her aide came to be with her, her food tray was left out of reach. She could not feed herself nor could she even turn her head to see where the tray was. All she knew is that it was nowhere in sight.

She was coughing up phlegm, exactly what is needed to break up pneumonia. But she told me no one was there to suction her. Her care, she felt was below standards. As she struggled to breathe the day before, she was unable to call for help. When someone finally checked in on her, they found her oxygen was not plugged in. The call bell, out of reach was something she couldn’t use anyways.

So what if she had no family to sit at her bedside? They have to work. What if she didn’t have such loyal caregivers – one who was there at night and another during the day “with or without pay”? Could she easily get bedsores that would be blamed on her lack of movement? Could she have choked to death on her phlegm? What if she fell out of bed trying to move or get up? Are nurses and other support staff supposed to continue with the same case load of patients and a disabled patient? I was told by a hospital administrator a year ago that they do tell their nurses to take special care of patients with disabilities. So, I asked him, are you giving those nurses less patients? He said they didn’t.

We need to think about how hospitals will start caring for people with disabilities. This experience is not unusual. I have been hearing similar stories for two years. The patient said to me that everyone was so “nice” but thank goodness she recognizes that nice does not mean safe.

Unfortunately, this can be any one of us someday.  There must be some system put in place to be sure these patients are kept safe, and keep their dignity.

Emergency Room Madness

How Busy is Too Busy?

Hospital cutbacks, not if I can help it! But what is one to do and where does the money go? I don’t work for a hospital and the short time I did, I felt like I was part of the problem. Now, when I go into a hospital I can look at it not from a paycheck standpoint but from a patient’s and safety view.

In the emergency room I had no problem finding the patient I was there to see. He was on a gurney next to the door leading to the outside where ambulance crews came in and out with stretchers filled with injured adults and children. The constant door opening and closing made for very little rest for this patient, and the others surrounding the door. I was told that earlier a patient was actually out in the vestibule because there was no place else to put him.

This was a hospital you wouldn’t think twice about going to on Long Island were you in need of care. But the emergency rooms of many hospitals are just too crowded and very busy which can lead to unsettling feelings of adequate care.

The staff constantly used the hand sanitizer, but there were families coming into the hospital who were not. I watched as staff used the hand sanitizer but still touched the bedrails, clip boards, blood pressure machines and then touched the patients. The gurneys so close that the feet of one patient was only inches from another patient’s head. I watched as a young woman’s belly was examined for pain in the hallway only inches from another patient.

How are patient’s sharing their medical history, personal information or asking questions in this situation? The hustle and professionalism of the staff was impressive. They stopped to answer questions when asked and they were calm but busy.

I didn’t know where to look. If I looked straight ahead there was a man with no shirt, handcuffed to the bed, to the right a young woman squirming in pain, no matter where my eyes brought me, there was a lack of privacy, breaches in standard safety practices, yet lives being saved with barely room to walk.

Tuesday, May 17, 2011

Nassau County and the Transgender Community

I spoke yesterday at the Nassau County Legislature on behalf of the Gender Clarification Law. This law is to clarify what the word “gender” means within the human rights law for the transgender community. The term gender can mean something as simple as the characteristics between male and / or female or it can be as detailed as the “actual or perceived sex and shall also include a person’s gender identity, self-image, appearance, behavior or expression, whether or not that gender identity, self-image, appearance, behavior, or expression is different from that traditionally associated with the legal sex assignment to that person at birth”, which is what is being requested by the transgender community.

I am aware that in Nassau County, Long Island there is no protection for the transgender person. A person can lose their apartment, lose their job or be harassed because they are transgender (a term meaning people whose gender identity differs from their assigned sex at birth). If the word transgender is not specific enough people can decide on their own what it means and people won’t be protected who may look different, dress differently or sound differently than what someone in society sees appropriate.

I witnessed a woman asked to pack and leave her rental home following her transition. She was tall blonde and beautiful and not someone anyone would consider a “freak”. But she had no protection. Someone else I know was pulled over by the police, had her car searched and was brought and left at a hospital because someone else, acting on their own prejudice, reported her having a weapon – of which there was none.

The Nassau County republican-party refuses to support this change in wording. My own republican legislator said to me “No, I won’t support it”. I’m not sure why- accept their own prejudices can be acted on in this powerful position. To give protection to a class of people who are now not legally protected is a slap in the face. Presently, New York City and Suffolk County have human-rights laws which clearly defines what gender means. Nassau Republicans refuse to define the word gender.

Following is my testimony:

"My name is Ilene Corina and I am a Patient Safety Advocate since 1997 and reside in Nassau County. I have been an advocate for the transgender community as part of my training with the American Hospital Association Patient Safety Leadership Training of which I received a full scholarship from the National Patient Safety Foundation. As a board member of The Joint Commission which accredits over 18,000 healthcare organizations, I am an advisor to the Joint Commission LGBT work group because of my work with this community. I am here because there is gender clarification law pending that has not been passed. Here are some of my thoughts and experiences:

A young man hands a written prescription to the medical receptionist that he is in need of a vaginal 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. He has already avoided the gynecologist and mammography he so desperately needs in an attempt to avoid acknowledging his body and the possibility that there may be snickers.

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

Bill wants to be called Jennifer but nowhere 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. 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 even 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. 98,000 a year.

One hospital worker spent years caring for patients. When he began his transition, he was taunted and harassed but his colleagues who wouldn’t allow him simple dignity and privacy. These are the people who are treating your loved ones.

Most hospital workers are the most caring people we will ever know. But some will go to work with unforeseen prejudices. There must be constant, mandatory, sensitivity training and this behavior will not be tolerated by law.. The place to start that is here, in this room with YOU – each and every one of you who are NOT willing to pass the gender clarification law to protect the rights of the growing number of transgender people who you can’t even count because you can’t find out who they are until they are protected.

Today, we are in a remarkable position: To fix this disconnect between the curious and caring.

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. His life is on the line because there is no protection for him.

 No one 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. I suggest that this legislation is passed today and you stop hiding behind your own prejudices.

Thank you."

Monday, May 9, 2011

Training to be a Patient Safety Advocate

Training May 2, 2011

Our Latest training, Family Centered Patient Advocacy was another success. I measure success by how much I learn too. By sharing experiences with the people who come to this program, we can all learn. It is important to recognize that as a fairly new idea, we must be open to listening.

The feedback was all positive, the participants improved on the post-test and the interaction was lively. The audience, mostly community and non-medical people did have a sprinkling of 2 or 3 nurses who shared their ideas which at times were not always what I would support. But, that’s part of the learning process.

I suggest an “advocate” call themselves a family friend, this way there isn’t another professional in the room. This has come with experience that when I have called myself the patient’s advocate the doctor in the room or a nurse caring for the patient may seem annoyed that now there is just another professional in the room they may have to answer to. Family and friends have become acceptable participants and even encouraged to be with the patient. Some medical staff find an advocate to be an unwelcome third party.

But, times could be changing. Some people in that classroom were going to call themselves the patient’s advocate. That may mean the adult daughter of the patient or a friend of the patient. It can also mean they may want to start a business and use a professional name. For whatever reason, I would be happy to know that given my experience people have heard my suggestions but are bold and independent enough to choose what is best for them.

After another training a participant told me he decided to not ask the doctor to wash his hands before touching the patient who was visiting the doctor for a well visit. When I asked why, he said he needed to choose where he was going to take the conversation and he didn’t want that challenge. I completely understood.

When we hold trainings about patient safety, we are giving the tools as we know it from training, reading and participating with others with the same interest. As an advocate I learn new things constantly. I watch for the doctor to wash his hands or use antibacterial lotion. I take notes and am respectful to the patient. Each time there may be an incident that will be different than another time. There isn’t usually a right or wrong way to do something. It is just having the knowledge and information to feel empowered to use it if needed.

Sunday, May 8, 2011

The Problem With Patient's Safety

Patient's Safety 2011

The biggest problem with patient’s safety, as I see it, is that the public, when describing their care as “wonderful” are usually talking about the nice medical professionals. Nurses who are warm and nurturing, the respiratory therapist who talked about his vacation with the patient or the doctor who loved to hear about the patient’s family may be nice people but may very well not be practicing safe care.

Once in a while I will hear someone say “everyone washed their hands” or “everyone asked me my name and birthday” but that seems to be more rare than regular. We are still talking about hand washing and common patient safety tools like checking that it’s the right patient as if these errors are new. This is old stuff and we should be moving onto newer and more complicated things to save lives.