Tuesday, March 14, 2023

March 14th Means More Than a Day; Patient Safety Awareness Week

 Patient Safety Awareness Week, I Remember Why

Each year on March 14th I stop for a moment to remember the death of my son who died because of the care he received (or did not receive) by the healthcare system.  Bleeding for 5 days after a tonsillectomy, Michael died from blood loss and a body full of infection. I believed all 5 doctors who said during that week that he was fine.  But he wasn’t fine.  He was bleeding to death.

As time went on, and as angry as I was at the system I trusted and failed me, I found there was something that made me just as angry nothing to do with the healthcare system.  The people before me, who lost children, didn’t tell me I would survive this.  I did survive.  I didn’t survive my job at the time, my marriage or financially because I chose to find out how something so terrible could happen by the people we teach our children to trust.  

I began to peel back the onion, layer by layer and for the last 25 years found out that when we get to the core of how our healthcare system works, it “stinks”.  Not only because of the confusion to use it, all the different diagnosis, medication, equipment, specialists, payment, insurance, blah, blah, blah, but because we are at our most vulnerable time trying to understand it.  There is so much room for error and if the public is not involved in better understanding how these mistakes happen, they will continue.  People will die and be injured, costs will rise and nothing will change. 

Prepare as a patient.  Do your homework, help a friend, and ask for help.  If you believe something is wrong when you go to the doctor or hospital, trust your instinct, don’t be afraid to challenge it.  And, if you are not respected for your participation, go somewhere else.

Tuesday, December 27, 2022

Emergency Room Risks


Misdiagnosis a Proven Risk in Emergency Rooms

In case you missed it, a recent study reports that about 1 in 18 people are misdiagnosed in emergency rooms each year.  The news article states: “The researchers estimate that 7.4 million misdiagnosis errors are made every year.”[i]

This was not, nor has it ever been, front page news.  Some may not believe this is serious enough, but imagine the reaction to 370,000 disabling injuries or deaths and 2.6 million people harmed, due to any other cause. Some say that “more training” of healthcare professionals is a solution.  But if patients do not change the ways they describe their symptoms, this will not change.  It has not changed in the 25 years since I started this work understanding patient safety, and many say that with the personnel shortage and overworked medical staff, it’s actually worse. 

As a patient advocate for the past 25 years, with more than 15 of those years at the bedside and with patients who describe their symptoms in the emergency room and in doctor’s offices, I can tell you the training must include patients and their families.

Accurate descriptions

Describing one’s symptoms is crucial to getting a correct diagnosis and appropriate care.

I often work with patients on how they will describe their symptoms.

  • Your leg is not “killing you” unless you are bleeding to death but instead, you may not be able to put full pressure on it. 
  • You “can’t walk”? Or is it painful to walk, and if so, where? On a scale of 1 to 10, how painful? 
  • You can’t breathe?  Chances are you would be dead.  Does it hurt when you breath? Or do you feel like you are gasping for air?

Does a person with new symptoms keep a history of them? A list of medications and when they were started?

Opportunities for error

If you’re feeling dizzy in the last few days, that may be caused by a new medication, a new diet, or a new perfume; or it may be something more serious, but at least if you have the history, you can go over it with the medical team.

Are the staff in the emergency room rushed?  Do you feel like they could do more and may have missed something?  Did they forget to take vitals or a history?

These are all opportunities for error.  Medical professionals are human and may make mistakes. That is why we at Pulse Center for Patient Safety Education & Advocacy have always encouraged patients and their families (or a patient advocate) to be involved. 

Some medical establishments are currently keeping families or advocates away. (Such as this recent visitor policy on a websiteMedical/Surgical and Critical Care Units: 12pm-8pm, maximum of 2 healthy visitors at a time). You may want to find out the visitor policy before choosing a healthcare facility.


A missing piece is often the lack of family and/or advocate support in the healthcare setting.  I have been accompanying a family member to a number of medical appointments recently and with the patient’s permission, find myself filling in many blanks.  I am careful never to correct the patient but instead offer additional and helpful information.  This support and practice can be lifesaving in a healthcare setting. 

Find here the STARS card which we use to help people chart their symptoms before seeing the doctor or entering an emergency room.  And most important, keep the statistics mentioned above ready, so if you are ever told “don’t worry”, you can prove that you have reason to worry.

Additional information on diagnostic,errors can be found at MISDIAGNOSIS - Pulse Center for Patient Safety Education & Advocacy

Check out www.PulseCenterforPatientSafety.org for more information or contact icorina@pulsecenterforpatientsafety.org

Friday, September 16, 2022

How Far We Have Come? Or Not.............

 Two Days of Learning 

I just spent two days at the Health Care Advocate Summit.  I planned to go to see what is happening in the world of patient/healthcare advocacy.  First, we should understand the many different areas of advocacy.

There are advocates who work for a healthcare institution, work for “big pharma” (pharmaceutical companies), who work out of doctors’ offices and yes, independent patient advocates who are hired and paid for by the patient and/or the patient’s family.  There are advocates who specialize in healthcare billing concerns, insurance questions, access to medical care and treatment, and financial navigation.  Many independent patient advocates may pay attention to those areas and have an expertise, but others may focus on rare diseases, chronic medical conditions, older adults, pediatrics, cancer, etc.  I’m sure you get the idea.

Though this conference was both virtual and in person (I chose to be there in person to meet some of the people I have already met over Zoom), the “independent” patient advocates seemed to be very few.  Missing were the words “patient safety”.

Though I get that people who have an illness need help navigating the health care system, getting proper medication or assistance with their plan of care, the word “safety” was never used until I brought it up.

While most patient advocates seem to be on a mission to help people get well, we are missing the point that medical errors, which happen to the people using the healthcare system, are still a serious problem. The speakers at the conference often sounded like commercials for the companies they worked for. It seemed like a competition about which company advocates should use for their clients.  Much of the information was important and I learned a lot as well as got some good resources I might use. But still, medical mistakes and injury is a huge obstacle to getting well. 

When a speaker talked about insurance companies and third-party administrators (TPA’s) that provide administrative services for self-funded or self-insured health plans, I asked why educating the public about medication safety isn’t part of the dialogue in saving money for these companies. After all, each year the U.S. Food and Drug Administration (FDA) receives more than 100,000 reports associated with a suspected medication errors, and each year in the United States alone, 7,000 to 9,000 people die as a result of a medication error.  To the speaker (and audience) I cited the statistic that medication errors cost $40 billion each year. In addition to the monetary cost, patients experience psychological and physical pain and suffering as a result of medication errors.(1)

So, I never did get an answer because though the speaker agreed that it’s a problem, he explained that the public or consumer is “not ready” to be educated on medication safety. I strongly disagree, and our Pulse Center for Patient Safety Education & Advocacy’s work in this area, assisted by other patient safety leaders suggests just the opposite.

I did learn some other things, such as where people who need financial support for their illness may be able to get it if they can’t afford their medications or medical care. It all depends if the funding is available.

Not sure how far we have come in 25 years. 

(11)  https://pulsecenterforpatientsafety.org/oneisanumber-medicationsafetyerrors/

Saturday, August 20, 2022

Be Aware of Medication Errors

 Medication Error Exposed

Recently I was with someone who picked up their medications from the pharmacy, signed for the five medications and we left. In the car, my passenger looked at the medications and there were six.  One had a name, address, and phone number of someone my passenger didn’t know.

At this major chain store pharmacy, a customer was given the wrong medication and walked out with it.  This is not the first time.  We returned the medication.  The woman who I returned it to did not apologize.  She only said, “I’ll take that back”.

This is why it is so important for people to talk about safe medical care and treatment.  In the Pulse Center for Patient Safety Education & Advocacy 2022 Patient Safety Symposium we learned about medication errors and how they happen. Check the name of the person and the medication when picking up medication was part of the medication safety presentation.   If we don’t share amongst each other what can go wrong, how can we help avoid an injury or worse.  Imagine if the person in my charge took that medication because many people don’t bother reading the label.  It may be only because there were five medications, we were reviewing which ones they were.

The woman who gave them to us, I’m confident, did not do it on purpose.  Reporting her would not matter and may only bring unwarranted discipline.  She was probably embarrassed enough.  What we DO need are more programs where the public is made aware of these potential errors, and we can be ready to catch them.  Pulse Center for Patient Safety Education & Advocacy offers these programs.  I wish more people would support this.

PS: Giving out the wrong medication also shared another customer’s name and address and what medication they are taking.  I’m not even addressing the lack of privacy here.

Would you have handled this differently?

Sunday, June 26, 2022

My Thoughts on Roe Vs Wade and Patient Advocacy

One Advocates Opinion

Roe Vs Wade is getting plenty of attention now that it has been overturned.  There are marches and demonstration and plenty of angry people and for years there have been marches and demonstrations outside abortion clinics too.  If you wonder if I have an opinion, I do, but you won’t hear it from me.  Let me explain.  It’s the work that I do that keeps me keeping my opinion on medical or healthcare matters to myself.

As a patient’s advocate, do I have a right to not take a case because I don’t support a person’s decision?  Years ago, a volunteer told me, after starting to work with us, that she could not be an advocate for people who are transgender.  She would be willing to pray for them, but could not be a patient advocate and support them.  Of course, she was soon gone from Pulse, but it has always left me wondering if advocates can truly advocate for someone with different beliefs or values.  

Patient advocates are human and if someone were asked to be a patient advocate for a young woman having an abortion and the advocate did not support abortion, could the advocate do it?  Should the advocate be expected to do it?  Should an advocate share their beliefs and values before taking on a client?  Or just turn down a case?  If they turn down a case, does that mean an advocate does not truly have the patients best interest front and center but instead, has their own values before the patient’s needs?

When I did a training with a hospitals leadership on working with patients who are disabled, one of the senior leaders said that people with physical disabilities are so much extra work when they must deal with wheelchairs. The others in the room gasped but I suggested that the honesty was refreshing.  She was facing the elephant in the room and now we could discuss it and find a way to deal with it.

I believe that if we are truly put on earth to help people, our differences should make us unique and interesting.  If we are to support people as their advocate, we must meet them where they are and take into consideration that we all do not have the same beliefs or values.  It may be a case-by-case situation but I just wanted to share that I’m OK with people who believe differently than me.  It won’t affect my work.  

I would love to know what others think.

Sunday, May 8, 2022

Don't Ignore the Life Saving Information in Small Print


Articles We Can't Ignore

There are many academic articles and newspaper reports that we may read, say “wow” and then move on.  Sometimes we won’t read them at all.  But there lies the problem, one I have been trying to address for 25 years.

Here is a perfect example.  This article titled    Candida auris Rapidly Recontaminates Surfaces Around Patients’ Beds Despite Cleaning and Disinfection discusses how hospital rooms are recontaminated with germs after a cleaning,  Environmental surfaces near C auris-colonized patients were rapidly recontaminated after cleaning/disinfection.”

The reason this matters to the ordinary person with no medical training or infectious disease background, is because as a patient advocate, I wipe down the patient’s room with disinfectant before and after a patient is treated.  I am often told by staff, “we cleaned that already.”  But it doesn’t matter.  We don’t know how well the cleaning is and thanks to the research that is done, but too often ignored, here are the facts that the cleaning isn’t done as well as they want us to believe. 

In this case, according to the Centers for Disease Control, candida auris is an emerging fungus that presents a serious global health threat. It is often multidrug-resistant, meaning that it is resistant to multiple antifungal drugs commonly used to treat Candida infections. Some strains are resistant to all three available classes of antifungals.

Though we may not be able to kill all germs as an active patient advocate or caregiver, the more we try by being involved and not an observer in our safety, the better off we will be.

Monday, April 18, 2022

Actual Letter to a Medical Practice

Could This Letter Be Going to Your Medical Practice? 

(Names have been removed)

Dear Office Manager,

I am writing this letter with much regret.  As a professional patient advocate, I have accompanied many people to their medical appointments and hospitalizations.  I have visited your facility numerous times throughout the years with clients, family members and for my own medical care. I have put off writing this letter hoping each time, that practices would change. 

It seems handwashing is just not part of the standard of care at this practice.

When a patient is brought into the room and blood pressure is checked and the patient is being prepared to see the doctor, the medical staff have touched doorknobs, the clipboard, the computer and then the patient.  When I ask them to wash their hands before touching the patient, I am told “I did already”.

Following the care given to the patient, I wipe down the patient’s skin, myself hoping to remove any germs being spread. Most recently, after checking my own vitals, the young woman opened the garbage pail (which has a foot pedal) with her hand, and then left the room using the doorknob. Often this kind of thing happens so fast, a patient doesn’t have time to react.

When another young woman came into the room and immediately washed, I thanked her, and she said she did so because she remembered me asking last time. 

I believe that handwashing in front of the patient is as much about trust and respect as it is about cleanliness.  If you do not wash in front of me, or use hand sanitizer, you obviously don’t respect me, so how can I possibly trust you?  After all. Isn’t this one of the first things medical staff learn?

Though your staff are not alone in their poor hygiene practices, they seem to be consistently unsatisfactory in all the medical visits I attend with patients.

According to the CDC, in a healthcare setting, staff are expected to use an Alcohol-Based Hand Sanitizer immediately before touching a patient.  This seems like simple, respectful behavior.

I would like to know how I can be assured that I will not have to be asking your staff to practice appropriate hand hygiene were I to continue using your facility for my own medical care and accompanying others for theirs.  I look forward to your response.

Ilene Corina, BCPA

Sunday, March 27, 2022

The Nurse


Any Nurse USA

I rarely, if ever comment on a medical injury case (an injury or death that is caused by the care received through the healthcare system).  I understand that people who work in healthcare are human, and mistakes are made.  I also understand the pain and suffering that goes along with the injury or loss of losing someone to the same people you trust to help.  But this case is getting so much attention, I would like to throw my two cents in for what its worth; recognizing I too, do not know the whole story.

Here is a short version of the story  https://www.youtube.com/watch?v=CP3sSB4lf3Q

This past year we have hailed healthcare workers as heroes for the care of people with the deadly virus and many leaving their own families to care for the loved ones of strangers.  Now, this breaking news of a situation that happened even before the pandemic, is coming to light. 

A nurse overrides all the safety measures in place to give a patient the wrong medication.  When the nurse gives the patient the wrong medication, the patient dies.  The nurse admits her mistake, is fired, loses her license, and is treated as a criminal and now, convicted of a crime, criminal negligent homicide.   She will be put in jail as are those convicted of crimes.

In my humble opinion, putting her in prison makes no sense.  She made a mistake; she admitted her mistake and the patient can’t come back.  Treating her as a criminal helps no one.  The patient’s family wanted justice and are entitled to something.  There may have been a financial payout, I hope they get some counseling, but is this nurse a criminal? When did the laws go into effect that a medical professional with no criminal history, has committed a crime by making a mistake?  Do they teach in nursing school that if a nurse is distracted, makes a mistake, and injures or kills someone they may be convicted of a crime and serve prison time?

We know that driving over the speed limit, texting while driving, drinking and driving are all wrong and can cause the death of someone, but who isn’t guilty of at least one of these things?   Its only when someone gets caught is there punishment and yes, they can be treated as a criminal if someone is killed during any of these dangerous acts while driving.

For the past twenty-five years  with Pulse Center for Patient Safety Education & Advocacy we have been teaching the public to be more prepared as a patient but there are things, like this incident that we can never teach people to prepare for.  There must be a certain amount of trust in the people who work in the system to care for us and our families.   So, what happened in horrible, but I question it being a crime.  It would be interesting to know how many nurses are willing to admit that they too have bypassed systems and why.  How many times the problem has been reported and ignored.

How much better it would be for this nurse to be an educator for other nurses since this case will probably go away quietly and in a few years it will happen again. Instead of ten years in jail, ten years of educating others. How many nurses across the nation have done the same thing, reported a problem and felt ignored?  Do they become a “whistleblower” or keep quiet for fear of losing their job?

The family needs to come out and talk about their pain, what it was like to lose a loved one this way.  Put a face on the medical mistake, but not in the court room.  Cases like this need to be talked about so others can learn.  I’m sure in a few years we will hear of another case, and another and many we won’t hear about because the media won’t pick them up.

There is no secret that healthcare workers often don’t follow the “rules”.  One way to easily know this is just by watching the lack of handwashing.  I am very conscious of handwashing because its is one of the simplest ways to know if a healthcare worker will follow policies and with lack of hand hygiene, I’m sure there are many other opportunities to cut corners, some are just more deadly than others.




Each year, in the United States alone, 7,000 to 9,000 people die as a result of a medication error. https://www.ncbi.nlm.nih.gov/books/NBK519065/



Parents say Walgreens mistakenly injected them and their two kids with the Covid-19 vaccine instead of flu shot




Hospital medication error kills patient in Oregon https://www.cbsnews.com/news/oregon-hospital-medication-error-kills-patient/



Devastated nurse committed suicide after she accidentally gave baby fatal overdose https://www.dailymail.co.uk/news/article-2008789/Nurse-committed-suicide-medical-blunder-led-death-baby-overdosed.html  

Saturday, March 12, 2022

March 14th Isn't Just Another Day

March 14th; Why it Matters

March 14th isn’t just another day for me.  Many people have anniversaries and birthdays worth remembering or celebrating. March 14th is a day I allow myself to feel sorry for myself.  But, as I have learned over the years, it is often the build up to that day that causes more anxiety, sadness or upset than the day itself.  Allowing myself time to be angry, depressed, or sad - with a limit, has been helpful to me.  I encourage other people to do that too instead of feeling guilty, for being sad or angry. 

Fighting our sadness or anger can cause buildup and resentment.  Allowing it to happen, without guilt or shame can be healthy and then thinking about being finished with negative feelings can bring us back to our old selves and be “done” and move on.

March 14th is one of those days for me that I always regret coming around.  It was many, many years ago, but the words said, and almost every movement I made is implanted in my brain.  This is believed to be because of the adrenaline that happens with sudden emotions.  

I was escorted into a room by the emergency room staff and behind closed doors I sat for what felt like hours.  Each time the doctor would come in and tell me they are working on him; I would suggest she leave and go back to caring for my son.  It didn’t occur to me that there was a team caring for him and she was the one sent to keep me updated.  Until finally, she came back and said there was “nothing else we could do”.  My son was dead.  It took a while to sink in and though I remember the gasps I heard from the people I love with me; it took me a long time to cry.  I had to see him, decide to donate what organs could be saved, and plan for – what now – there was no one to tell me what to do. 

As the days and months moved on, I had to figure out how a little boy, who had chronic ear infections, would get his tonsils removed and bleed for 8 days – bleed to death, and a body filled with infection went ignored by all the doctors I saw during that week.  Each of the 5 times in the week leading up to his death, I was in a different emergency room, everyone said he was fine. 

I sat numb in the weeks that followed his death thinking that I was right, and all those doctors were wrong.  To prove I was right, it cost my son his life.  I wondered why, in all the months that followed, no one asked me what went wrong.  What did they miss?  Would anyone learn?

If Michael survived because of what I know now, and I spoke up louder, insisted more that something was wrong, insisted that they bring him back to surgery and any one of the 5 doctors I took him to in that week saved him, there would be nothing to learn.  It would be how it’s supposed to be.  He would get better, and we would all go on with our lives.  We do not count the people who survive or prevent medical errors by speaking up.  Only the dead are counted and that often doesn’t work either.  Medical mistake was not on his death certificate.

As the years moved on, I committed myself to encouraging people to speak up for themselves or their loved ones. I began attending medical conferences in 1999 so I could hear the medical professionals talk to each other about safe patient care, medical errors, and injuries, caused by their mistakes or systems that failed them and us, the patient, and families. 

I will never forget the phone call of a woman who said her child was going in for a tonsillectomy.  She was nervous but wanted to ask me what she should know before taking her child for surgery.  Would I mind giving her advice.  It was when I realized that we could save lives by talking to each. What we, the people who live these tragedies can be doing.

When families experience an injury or a death caused by the healthcare system, it is hard to “blame” because we often don’t have the facts and there is no report written up as there is in a car accident.  Medical care is often as complex as driving with no driver training.  We must completely count on the expertise of the others on the road. 

Over the years I like to think of my activism turned advocate as a good thing.  I would like to think that in the 25 years with a nonprofit organization Pulse Center for Patient Safety Education & Advocacy based on educating the public, encourage the sharing of information and helping people learn to advocate for themselves and their loved ones, we are in a way the driver’s education we all know, and respect meant to help, support, and save lives. 

This week, the second week of March is Patient Safety Awareness Week on its 20th year - The IHI knows of the importance and many hospitals celebrate patient safety as well as healthcare quality organizations such as The Joint Commission.  Some even use this time to honor those lives lost, but still., you won’t find it on any calendar of awareness though I have tried for years to get it recognized. Awareness Months, Appreciation Weeks, National Days for Marketing | Crestline

So as March 14th comes and goes quietly for me, I can only hope that someone will speak up, speak out and another life will be saved.

Thursday, December 30, 2021

Call Only If It’s an Emergency

What's an Emergency?

The news reports are telling us lately that people are calling 911 when its not an emergency and tying up the emergency response teams who are needed for “real” emergencies.

But what is an emergency?  Don’t assume people know this. It is part of the disconnect between patient care and patient safety.

In 2010 I was accepted into the American Hospital Association/National Patient Safety Foundation Patient Safety Fellowship Program where I was trained for a year by experts in patient safety.  I was the first person from Long Island accepted into this program and only the second who did not work “in” healthcare.  I had to submit an Action Learning Project which I called a “Patient Safety Council,” now called "The Health Care Equality Project” and because I did not have a hospital where I worked to support me, I was sponsored by Nassau Suffolk Hospital Council, Northwell Health, and a grant from the Long Island Unitarian Universalist Fund. I will forever be grateful for that support.

My project was to bring groups of people together whom we called “vulnerable populations”, teach them about patient safety, and then ask them what its like to be them, when using the healthcare system.  Some of the groups we worked with were people with HIV/AIDS, people with physical disabilities, families and hospice workers, people who are transgender, non-English speaking community members, and young, homeless mothers living in shelters. Thirteen groups altogether.

We would work with each group to find out what the concerns were, and the obstacles to safe medical care.  The young mothers come to mind today because I was told by the house mother that at these shelters where we worked with them to discuss keeping their children’s medical records, medication lists and preparing for the medical visit, they also called an ambulance for non-emergency calls. The house mothers were concerned about the abuse of the system.  I didn’t believe in labeling it abuse when it was a matter of asking them what they think of when they think of “an emergency”.

Some considered it an emergency if their baby had a fever, sore throat, bloody nose or a cut.  They understood that a splinter was not an emergency as long as someone could remove it.  After learning of the disconnect in understanding what an emergency actually is, a paramedic and then a pediatrician spoke to the mothers, and we put together a policy to help them understand what an emergency actually is and isn’t.

Patient Safety starts with better communication.  Let’s all try to imagine where that breakdown might be. For more information on the Healthcare Equality Project visit  HealthCareEquality - Pulse Center for Patient Safety Education & Advocacy

We are still looking for groups and welcome an opportunity to hear from you if you have a group we can work with.