Doesn't Safe Care Matter?

Patient Safety Matters

We watch commercials on television about the latest medications, and the news carries information on breakthrough medical care and treatments.  But, if the public isn't prepared to be a full partner in their medical care and treatment, the outcomes can be disastrous.  Why then is the media not more focused on campaigns like TakeCHARGE: 5 Steps to Safer Health Care where no matter what disease or health issue is happening, being a prepared patient can help improve the outcomes.

Whether in high school and preparing to leave home or a college student on their own TakeCHARGE is potentially lifesaving and can absolutely improve outcomes for anyone at any time of their life.

The 5 Steps, that are helpful to the patient, as well as the people who work in the healthcare system are:

1.       Understand & complete your advance directives  

2.       Keep a record of your medical history & current medications

3.       Prepare for doctor/medical visits / Make a list of questions

4.       Ask caregivers to wash their hands to help reduce infections

5.       Use an advocate or support person / support or help advocate for others

Help us grow this campaign with your support. Whether is $5 or $500 or more, your support as well as helping to share this message is what we need to improve outcomes – you van make a difference!    

Donate Below

https://www.gofundme.com/f/support-pulses-takecharge-campaign 

Patient Safety or Payment from a Lawsuit

 

December 23, 2023

The Honorable Kathy Hochul
Governor of New York State
NYS State Capitol Building
Albany, NY 12224

Dear Governor Hochul,

I watched with interest the news that “Grieving families across New York are fighting what they call an injustice”.  The decades old law that limits payouts in wrongful death lawsuits based on the persons age and / or financial worth. https://www.cbsnews.com/newyork/news/new-york-grieving-families-act/

This fight has been going on so long and I for one, lived it when my young son bled to death following a tonsillectomy over 30 years ago.  I didn’t need the money, my son was dead, I wanted answers as to how this happened and without a lawsuit, no one would talk.  There is an important piece missing.  The lawsuit happens after the death.  We need to avoid the death to begin with and one reason I believe death from medical errors are so high is because the public is not prepared to be patients. 

In 1996 we started Pulse Center for Patient Safety Education & Advocacy a small grassroots organization based on Long Island, New York to educate the public to be a support and advocate for each other for the best outcomes in care.  Learning how errors happen (something many survivors want to know) and how to avoid medical injury needs the attention we have never received.  Whether it is for older adults, cancer, lupus, epilepsy, mental illness, disabilities, broken bones or rare diseases, learning patient advocacy can save lives and reduce lawsuits following death or injury. So, while there is a discussion about payment after a wrongful death, please consider the work we have been doing for 25 years to avoid the injuries and death within the healthcare system, by educating the public to begin with.

 

Sincerely. Ilene Corina, BCPA

President, Pulse Center for Patient Safety Education & Advocacy

www.PulseCenterforPatientSafety.org

icorina@pulsecpsea.org

516.579.4711

I Didn't Tell My Children "No"

 

Communication Starts Early

Starting at a young age and even before birth, we communicate with our children.  Verbally or through facial expression, how we communicate with others can trigger happiness, sadness, anger or disappointment.

Babies know when we are happy and they know when we are angry.  Even my dog crawls away when I scold him as if he knows I am disappointed or angry.  So, with that in mind, I get frustrated when I hear parents in the store telling their child “no” you can’t have that toy.

I don’t think I ever told my kids no.  Instead, I asked them how they will pay for the item they cried for.  What will they give up to get that new toy?  Sometimes they would offer to do chores to earn money to buy something or, not wanting to give anything up, they would stop asking for wasteful items.  When I hear parents telling their child “no” without a deeper explanation, it makes the word seem useless.

I also didn’t make my children share.  If I was reading a book and someone asked me for it, should I stop reading it and offer it to the other person?  I never told my kids they must share.  I did say to them “make a deal”.  If you want something from someone, are you willing to wait and ask for it when they are done?  Would one child want to give up an item to another because they are told to?  Won’t that just make them resentful?   I never got between my two boys, 12 months apart if they both wanted a toy or game.  They always worked it out after knowing mom would tell them to figure it out.  Yes, some parents thought I was nuts when I told them my kids were not required to share their items.  I would tell the other parents to suggest their child makes a deal with mine.

When they were old enough to crawl, my kids had chores.  They started off lining up their shoes.  They didn’t have to match and even if there were just two shoes, they needed to be lined up.  Telling my kids to clean their room was wasteful energy.  What is clean to me may not be clean to others.  Instead, if it doesn’t belong on the floor, it needs a home. 

Communication is what makes up relationships, helps in understanding and can predict outcomes.  Good communication can make for the best outcomes.

Even today, the parents of my children’s friends remember I would tell all children playing in my home, when it's time to clean up, each child would find five or ten things to put back where they found it.  I remember one child asked, “is a deck of cards one thing or 52?”

A Hospital Stay in 2023

 

A Hospital Stay

While a close family member was hospitalized for over a week,  I had the opportunity to remember how scary it is for the family (me) and how vulnerable we become at the mercy of the team caring for the patient. 

It would be easy to say this hospital was wonderful.  The nurses were caring and helpful.  They answered questions and came when called.  The doctors performed potentially life-saving tests and procedures to care for my family member, and when asked to explain things again and again so we could capture information and directions, everyone was patient with us.  When I asked the doctor not to say “don’t worry” to me, I was able to collect information and keep communication flowing .  It was a teaching hospital, and my family member would tell me if I missed the neurology class or the cardiac class; all the students would help with information needed to make decisions. 

So what was the problem?  Can I still find a problem after nine days of acceptable medical care?

Yes, and there is a reason I will share some of what I experienced.

The tray tables were never left near the patient, who could not get out of bed.  Each time the food was brought into the room, it was left out of reach.  Even the patient in the next bed, who had no visitors, yelled for his tray table.  Life-threatening?  No. Inconvenient and inconsiderate? Yes.

When an Occupational Therapist put her box of tools on the bed and spread them out, I went and got all new bedding, explaining to the nurse that this was not OK.  The nurse offered to help me change the bedding, as did the OT, but she acted as if this was acceptable practice.  Even putting a towel down over the bedding would have been acceptable.  When I pulled the sheets off,  I found the bed itself was torn and stained.  Life-threatening?  No clue.

I asked the nurses when the last C-Diff infection was discovered on this floor, and they said it had been at least two years.  I responded that that was a good thing, because no one was washing their hands.  No sinks were available except in the patient’s bathroom. Some staff used hand sanitizer before entering the room but not before treating the patient. Everyone wore gloves and some did not use hand sanitizer (that I could see) before putting on gloves.  I never saw the stethoscope being cleaned before use.

I wiped down the chairs before sitting down. Most were dirty. One was in such bad shape it was chipped and torn, and when I wiped down the arms, I got a splinter.  The garbage was emptied daily but the bathroom was not cleaned for the whole time we were there.  The family cleaned it.  When I asked the person who emptied the garbage when the bathroom gets cleaned, he said, “I will find out”. 

Why do I share this?  Believe it or not, its not a complaint.  It is really just a reminder that the family and friends of the patient play an important role in helping to keep the patient safe.  Whether it means cleaning the bathroom, wiping down anything staff may touch and then not wash their hands, keeping notes, or making sure the patient can reach their tray table without falling out of bed, we have a place. Remember to use it!.

Why Donate

Where Does Your Money Go When You Donate?

Each year, all across the country, there are nonprofit organizations looking for funding through donations, events, grants, or sponsorships.  Sometimes we know what they do with the money, such as help pay for cancer research, feed the hungry or build homes for the homeless.  Sometimes we are not sure where the money goes.  The money may support the salaries of the CEO and other staff, the office space needed to conduct business or the equipment for the organization to function.

Still, sometimes blindly, people offer up money to help support a cause they believe in.  Nonprofit organizations need that support to function.  So, as we come to another fundraiser for Pulse Center for Patient Safety Education & Advocacy, as we move out of our 25^th year and keep going, I want to share with anyone who wants to know where your money goes.

We have no salaried staff.  Instead, we have people who get paid for a few hours a week to do some of the important administrative work.  We have never had a paid CEO or Executive Director.  Unless there is a funded project, our President has been a volunteer for over 25 years.

We do not have an office.  All volunteers are virtual, and we used Zoom long before the pandemic.  But, as you know, Zoom costs money, During our yearly symposium, we had as many as 29 volunteers all meeting virtually.

So where does your donation go to?  It helps cover the costs of running Pulse and our three free programs a month that help support people navigating the healthcare system. Also, we need the website, telephone, consultants, and memberships to keep up with what is happening.  These are all important to an organization that has existed for more than 25 years strictly as a support for the people who need us.  We hope you will give as much as you can.  A $5.00 donation helps, as does a $500 donation — because until we can hire a grant writer, professional fundraiser, marketing professional, business consultant or salaried staff, we count on you to help keep our doors open (even if it is virtually).

Thank you for considering supporting the Pulse fundraiser or making a donation. Or, please consider volunteering your time and talents; even if it’s for just two to three hours a month, it matters.

Feel free to Donate Now!

The Union Story

Unions

Many people know that I am now a full-time caregiver for my brother.  This is not how I had planned for my later years, but I am happy to be in his life and able to offer him the care and services he needs.

I work for an agency which pays me.  I report my hours to them and am trained by them.  The past few months, I have been called and emailed by healthcare workers unions. They want the employees of this home care agency to vote to unionize and pay them to “represent” the homecare workers.  The homecare agency is calling and emailing telling us we don’t have to do that, and we can ignore the unions asking for our money.

Yesterday I was visited at my home by a woman. She was in front of my house as I was coming back from a long walk with my dog.  I asked her who she was looking for and she was looking for me.  She asked if we could go under the carport out of the rain.  I said “no”.  I wanted her to go through her speech as to why I should join their union.  I do support unions.  I have always belonged to unions but this one was different.

“So,” I asked her after she went through her presentation.  “Your union will represent me if I abuse my patient, if I steal or I use drugs illegally”?  She looked puzzled and said “yes”.

“Who” I asked her “represents the patient?”

As I originally searched for a caregiver for my brother over a year ago, I said he needed someone in the morning.  They sent people who would only work evenings.  I said he had cats (he no longer does) and they sent people who were allergic to cats.  I said he lives upstairs.  They sent people who couldn’t walk the stairs.  He needs rides to go shopping. They sent people who don’t drive.

I explained this to this lovely woman as we stood out in the rain and asked again, “who represents the patient?”  I invited her in out of the rain to sit at my kitchen table.  She didn’t have an answer.

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

 Patient Safety Awareness Week, I Remember Why

Each year on March 14^th 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.

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 website: Medical/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.

STARS

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

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[i] https://effectivehealthcare.ahrq.gov/products/diagnostic-errors-emergency/research#field_report_title_1

 

 

 

 

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/

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?