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.

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."

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.

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.

Simulators

Visiting a Sim Lab

I was invited by an administrator of a large health system to visit their simulation lab. I get very excited with this sort of patient safety education because it is an opportunity for medical professionals to train in team work, cooperation, as well as policy, procedures and communication skills.  After all, pilots don't fly the first time they are in a cock pit.  They start off in simulators.

I just can’t imagine medical training on real people any more. No wonder there are so many errors and miscommunication is one of the biggest pieces.

 I often ask a nurse who is caring for the patient I am with “How long have you worked here?” If she says one year or ten years I’m not sure if it matters. But, it helps to know if the nurse is fairly familiar with the surroundings.

 We can start asking soon if they have been trained on simulators. That may actually make a difference.

Quality of Care

Where is the Quality of Care Going?

I thought I have seen it all, but I can be wrong. I was called to this Long Island hospital by the adult son of an elderly woman. His mom, he told me was in her bed all day at the hospital, had bedsores and he was pretty confident she wasn’t eating because no one helped her eat. He had no other family and since he lived with his mom, he feels obligated to help her stay independent. He worked during the day, went there every night at dinner time to help her eat. He felt it was just short of abuse but he didn’t know what to do.


I showed up at 11:30 AM. She was clean and resting and it turns out the son hired someone to clean her in the morning. A young man came in with a lunch tray and put it on the table at least 2 feet out of her reach. I watched as a young woman went to the patient in the next bed, also an elderly woman, and moved the bedpan from the chair to the windowsill so she can sit down.

 I sat for another hour and watched the nurse come in and change her IV bag, never looking at her wrist band (but I assume she would say she knows who she is) so I asked who that medication was for. At that point she looked at the name on the medication.

I came back at 4:30 and the tray of food was never touched. Her bedsores “large enough to put a fist in” were examined by a nurse who unwrapped and then rewrapped the wounds putting the same tape and bandages back on. I asked why she did that since she was struggling with the tape sticking to everything and she said she just measures the wounds – she doesn’t treat them.

  I was there to try to find out who would speak to the son and help coordinate his mother’s care. The case manager said “you have to speak to the doctor”. The doctor is not available in the evening when the son can be there. It became a huge run around in a complete circle. This woman was not getting “care” she was existing - and the hospital was getting paid for this lack of care.

 This morning, my first call was from a young woman. She was going to meet with her mother’s doctors at a hospital. The care she said is awful. She is in a dangerous place and she didn’t know what to do.
Yup, same thing.

Using Home Visits

Healing From The Heart

I returned the call late on a weekend evening to a person who is disabled. Her legs don’t work at all and her hands cause her difficulty. She was angry and seemed scared. She was in the emergency room the night before. She was having difficulty breathing and may have a pneumonia she told me. Her doctor wants her back to the hospital but she knows, that if she had the proper medication, she would be fine. “I have a nebulizer” she told me. “I just need a prescription for the medication”. I wondered what the doctor’s choices, if he really cared deeply for his patients could actually be.


It’s not my practice to make referrals but felt I could in this case. I suggested she may want to look at a Nurse Practitioner I know who makes house calls. I know many people who use his services. They all like him but I know him socially, not as a medical professional. He has a background of working with the disabled (his long-time companion is blind) and I have seen him interact lovingly with the elderly. He is someone who is in this job for all the right reasons.


He went to see her at her home and the message I got in the morning is that he was a “godsend”. Imagine if healthcare was always like this?This woman, about my age, runs a fairly large business. She is bright and charming and very, very well respected in the community she serves. She can articulate her needs, assertive but also gentle. She has lived in her body her entire life and knows her limitations. She did not want to go back to the hospital. In her wheelchair, though electric and responsible, becomes a bother. Why, she wondered can’t the doctor just call in a prescription?

The Wrongful Death Law

NY State and The Wrongful Death Law

Parents of children who die because of their medical care have, for years complained that they can’t find legal representation because of the “Wrongful death law”. The same is true for the adult children of senior citizens.

New York State strictly limits the types of damages recoverable in wrongful death cases, so careful attention is needed when proving recoverable losses. These recoverable damages can include pre-death conscious pain and suffering and economic or financial damages — these are not limited to actual financial loss. For example, a child’s loss of parental moral, intellectual, physical training and guidance has an economic value.(http://www.yournewyorkinjurylaw.com/wrongful-death/)

Many patients or family members have been turned away because there may not be enough money in the case (it may take more money to explore the case or pay for expert witnesses than could, or would be collected). These survivors are often left with no answers but until the statute of limitations runs out, hold on to a dream that some attorney would take their case and, at the very least, answer the question of “what happened?”

New York State's Estate Powers and Trust Law is considerably narrow in the damages which it allows for wrongful death claims. (http://www.smileylaw.com/Articles/Recovery-Under-NY-s-Wrongful-Death-Statute.shtml)

 Attorneys will tell the family that they have a “good” case but because of the high cost, and very little financial gain from the death of a child or senior citizen, retired with very little income, housewife who does not work outside the home or single adult with no children, it is just not worth their time. So, for years there has been a grassroots interest in changing the “wrongful death law”.

But is there really such a thing? And if so, are there exceptions?

I just received a three page letter from a local law firm that shares some of the cases they were involved in resolving.

• $700,000.00 for a 64 year old woman for damage to a tendon when a steroid was administered and complicated by an infection.

 • Settled on $550,000.00 - A sickly 69 year old man died when he was administered an improper cardiac catheterization.

 • $1,100,000.00 for the undiagnosed lung cancer of a 79 year old man.

• $1,050,000.00 for the death of a single man with no children who died from undiagnosed melanoma.

• A 75 year old woman died during hip replacement surgery. This case settled for $550,000.00.

• For a 2 year old child who died from undiagnosed meningitis the case settled prior to prior to jury selection on $1,175,000.00.

 In other states, parents have received compensation for their child’s death and have used that money to start foundations. They have moved their own agenda forward in memory of their family member even without a lawsuit or financial compensation. Families of those who have died because of their medical care have founded organizations, developed programs and have shared their stories graciously to help educate others.

A lawsuit is usually not about the money, it’s about answers but sometimes, families should be entitled to financial compensation with or without a lawsuit. But, I’m not sure I would be comfortable hiding behind the wrongful death law as a reason an attorney won’t take a case.

There are many facts behind these settlements we don't know.  But,  if attorneys are agreeing to take some cases, they need to do something for those cases they turn away.

Health Affairs Symposium

Health Affairs Symposium Washington DC

The host of today’s program in Washington DC opened the symposium with an introduction about what the next four hours will bring. Leaders in patient safety research were to share their findings as it appears in the papers published by Health Affairs, A leading journal of health policy and research supporting the writings of various health issues and research.

This time it was patient safety and quality healthcare. In her opening remarks, the host said to the audience of, I suppose, writers, researchers and medical professionals “Imagine what the public would think if they knew what we know”. Those words would ring in my ears and set the stage for the rest of the program for me.

When I had an opportunity to speak, I told the audience that of course the patients need to be told. How else can patients make informed decisions when they don’t know the errors that might happen with their treatment? How can there be “informed consent” when the public is not told about ALL the possible outcomes and that means the possibility of mistakes?

The term noncompliant came up a few times. Patients who do not follow the doctors care plan are considered noncompliant. But maybe they are just not trusting because they know they aren’t being given all the information needed to make informed choices.

 Speakers were from hospitals, research consulting firms, The Joint Commission and the National Patient Safety Foundation. Each did a research paper, which was published by Health Affairs on some aspect of patient safety or quality. Dr. Mark Chassin, President of the Joint Commission spoke about the recent work with high reliability organizations.

He also said that every week there are still as many as 40 wrong site / wrong patient surgeries – completely preventable by following procedures such as marking the site. This too is something patient’s must be made aware of – over 2,000 wrong procedures a year?

I asked a group of hospital administrators sitting on this panel, how do you know that what you are doing is getting to the bedside. At the top, there are policies and standards set, “I know in many cases they are not being followed at the bedside”. I told them about my many hours at the bedside with patients and simple patient safety policies are not followed. How are they, I asked them, involving patients because that is how to ensure procedures are being followed?

 If you really want to see patient safety improve, I suggested that this program goes “on the road” and speak in every community. Share these statistics and numbers and see the groundswell of change come from the public.