Senator Hannon's Senior Health Fair

Table at the Fair

I set up a table at Senator Kemp Hannon’s Senior Health Fair to distribute literature to the people (mostly over 60) who might be interested in patient safety.  PULSE of NY, now called Pulse Center for Patient Safety Education & Advocacy, has had a table there for many years and it has proven to be a wonderful networking event.  We have always been grateful to Senator Hannon for including us in this lively community event.   

For years it was a great opportunity for me to spend time with my parents who have been volunteers for 20 years, then just my mother, and now with them in Florida, it’s a chance to spend time with other Pulse volunteers as we meet the community.

Ideally, I suppose, we are supposed to be making the community aware of our services and how we can help. Instead each year it seems to be a bigger and better event for older folks to go trick or treating.  Just before Halloween the tables are piled with give-aways like pens, back scratchers, hand sanitizers and yes, lots of candy.  Some of the merchants even joke about who has the best candy and we find it fun to swap!

After all these years of setting up tables at fairs, it’s hard to imagine the best way to approach people about patient safety.  Why isn’t the public more interested in becoming an involved patient?  The people on either side of me who worked for an insurance company and another nonprofit each had personal stories of medical care that would fall under patient safety or medical injury.  They got it - but had no plans to share their experience so others could learn from it.  They suffered in silence.  What is the shame?

If we say “medical error” is there automatic blame?  I can assure you that when there is a medical injury, 100% of the time there is a patient involved but yet still patients are left out of the conversation.  That has to change!  Always looking for suggestions how.

Be an Ally

Why is Being an Ally Important?

Why is being an ally important to the LGBT community or any community that needs a voice?

I remember when I did a program at a hospital about sensitivity of working with people who have various disabilities such as using a walker or in a wheelchair.  During the open discussion someone in senior leadership said that they don’t have enough staff to work with people “like that.  “They” take extra time and the rooms are not meant to accommodate their equipment.

If I were in a wheelchair, I’m confident that those words would never have been spoken.  If you think that’s good, I disagree.  They need to be spoken and discussed.  If that VP carried her feelings out of the room and to her staff, it would be a ripple effect and the negative comments and feelings would reach a patient – somewhere.  Now that this is on the table we were able to discuss it, find the appropriate words she can share with her staff (who may feel the same way) and then make accommodations and plan appropriately.  The elephant in the room needs to come out for discussion and to learn what to do.  Keeping this bottled up helps no one.

The same with people who are gay or lesbian or transgender.  A bearded woman may make someone feel uncomfortable but isn’t it her right to grow a beard?  In healthcare it does matter because when toileting or body parts that are different on a male or female.  Should healthcare professionals ask men and women (who are presenting as one or the other) their last menstrual cycle, if they are pregnant or if they have had a prostate exam?  I know of a transgender woman asked her last menstrual cycle in an emergency room and instead of coming “out” she gave a date.

When people have been frustrated over questions and mistakes in pronouns their whole life or people who may seem insensitive to needs, it is the ally who can step up and help with the questions and education.

Yes, I will go to the bathroom with you and gently tell someone to mind their own business if they comment while you get angry.

Yes, I will help you with your wheelchair and ask people to give you room in the hallway. I will help you with your English or help get you an interpreter.  I understand that my friend doesn’t read well and I will help with the consent forms or admission packet.  As an ally, there are many places we can step up and help.  We need to be open to learning from those who want us, what they want from us and then do it.

To those who are living in the world that I don’t know or understand, I ask you to be patient and remember each person you meet does not know the lifetime of struggles you have had.  We make mistakes and may seem inconsiderate because we don’t know.  If you shut us out in your frustration, we will never understand each other.

High Cost of EpiPens

Epi Vs Narcan

These past few weeks the high cost of Epinephrine (or EpiPens) has made the news.  It’s not that new.  In March a story came out in ModernHealthcare about the high cost of this life saving drug.  Around the same time I was working with teens who sat at my dining room table and we talked about patient safety and being an Involved and Informed patient.  A young man at 16 years old with nu allergies questioned why Narcan is free to the public and his EpiPen is so expensive. 

We know that many more people will die from drug overdose than allergies but isn’t that the system once again using “measurement” to decide who lives and who dies?  If I had serious allergies and in my financial situation I might be hoping that prayer could work just as well.

Then I realized that if the pharmaceutical companies make a lifesaving medication, people who die from overdosing can come back and buy more medications from the pharmaceutical companies – look who gets rich off this.

What we really need is to encourage Jiff and/or Skippy and/or Peter Pan to go into the business of making EpiPens so those people who are allergic to nuts can eat them.

John Walsh a National Hero

Why John Walsh is Important to Patient Safety

I admire John Walsh.  You may know him as a television show host finding criminals, The Hunt and years ago he hosted America’s Most Wanted.  Or you may know him as the dad of a murdered child.  He is both.  And, 35 years after his son’s murder he still calls himself the father of a murdered child.  That’s who he is.  No apology.

I met John Walsh years ago when I was a guest on his talk show. (You can see I haven’t changed a bit)  I asked him what makes him an “expert” in what he does.  He is not a police officer, detective, or crime fighter.  He is a dad.  He said he learned everything he could and worked hard letting people know what he knew. 

I admire that in a person.  He believes in something and all these years later he is fighting for what he believes in.

I wish patient safety had a little bit of that support.  Imagine if all the law enforcement would say “Mr. Walsh we don’t need your help we can do this”?  Instead he is welcome as a partner in fighting crime.  Why then is it so difficult for the healthcare professionals and the foundations that help fund their programs to recognize that medical errors and injuries that happen at the bedside need the support of a community willing to help?

I’m not sure I would call myself an expert.  But, through PULSE Center for Patient Safety Education & Advocacy (Formerly PULSE of NY) I do have close to 1,000 hours as a bedside advocate witnessing errors, breakdown in communication and misunderstandings that might cost a patient their life and many, many hours working with people after an injury of death of a loved one.   My volunteering as a board member with TheNational Patient Safety Foundation and The Joint Commission – both for over 10 years each,  I understand how these “mishaps” can be corrected and how, if they are not taken seriously it is similar to playing Russian Roulette with a patient’s life.  Patients and the family who say something and are ignored, rarely have a place to take that information to have the system fixed.

If it is true that medical errors are the third leading cause of death in this country, and there is no reason to doubt this,  everyone needs to get on the same page and work together to not fight crime – but fight the system of errors which is left to only the often overworked medical professionals to deal with on their own.

Recycle the Pickle Jar

The Pickle Jar

I threw the pickle jar in the garbage.  I wasn’t sure if it was washed good enough and I didn’t want to wait to recycle day.  So I threw the pickle jar in the garbage.

If you asked me if I recycle I would say “of course” because actually I do – but not always would be the more honest answer.  I’m not sure where the magazines go so sometimes I throw them in the trash.  Yes, I recycle.  Sometimes if a can has sharp edges and I don’t know what to do I throw it in the trash.  Yes, I recycle. 

I care about the earth too yet often enough I forget - or actually I am knowingling breaking rules for convenience.  Convenience so I don’t have to find an answer or don’t have to obey the rules?  Either way these rules are there for a reason and if I am breaking these rules, my behavior may effect someone else.

Imagine if medical professionals did that.  Oh never you might think?

A patient needs two people to lift her.  The nurse does it herself and drops the patient injuring herself and the patient.  Asking name and birth date – takes too long.  Introduce themselves to the patient – why bother, I told them yesterday who I was.  Check medication with the patient in case the doctor stopped the medication and the order is not in the chart.  Why bother?

If you think they might cut corners, ask your clinician to check your medication, introduce themselves, wash their hands and explain information so you can understand it.  Just because they want to cut corners don’t let it be with you.  Even if the hospital you are visiting encourages staff to do these things and have been recognized for their work, doesn't mean the person walking into your room, or your family members room knows this.  Help them not cut corners.

Cutting corners and breaking rules is not a good thing for patient safety (or the environment)  

Where are the Best Hospitals?

Drug Free School Zone

I drove past a sign in front of a school that said “Drug Free School Zone”.  I wondered if I were starting a family would this give me confidence that my children would be safe from illegal drugs.

Then I hear a commercial that if I buy a mattress, I will sleep better.

The mayor just said that the people going to today’s parade will be safe because of the added police protection.

Here lies a serious problem (my opinion) with society.  I think people believe what they want to believe even when there is room for error.    That means the best, or safest hospital in the country must have all the latest safety equipment?  Or do they have the best food, clean sheets and nice rooms?

I had a conversation last week at a meeting with a woman who I know is highly respected in her business world. We talked about her colleague, someone we both knew who was very, very sick.  She told her colleague that he has to go into a NY City hospital for his very serious condition.  “It’s the best place to be” she told me she explained to him.  This was going back about six months.

I asked her why she thought so and she said it’s just the best. But her colleague insisted on using a Long Island hospital and she told me she couldn’t believe it.

We are often led to believe through advertisements or just because we want someone to have the answers that things will be done for us.  There will be no drugs at the Drug Free School Zone or we will be safe at the parade.  But, we still need to be on the look out at that parade and be part of the safety process.  How can our safety possibly be guaranteed – ever?  It is those of us on the ground who have to be prepared.  The parents who think a safe zone for their children means that their child won’t become involved in illegal drug behavior is mistaken.  They most certainly can.  The person picking up that drug or smoking that joint (or not) is the only one who can really make a change.  Not the sign or even the adults who talk about drug use in schools.

The woman who insisted that NY City hospitals are the only place to be didn’t even have a favorite.  Just any hospital would be better she said.  I didn’t want to debate her on the topic so I just gently explained that there are some great hospitals and healthcare workers on Long Island and if he is closer to family he will have visitors and in an emergency he will be close to his doctors. I explained that it is up to him, and his family to active and engaged and part of that team for the best outcomes.  She said she knew that and he is involved but still  “nope” the city is the best place to be.

I asked her how her colleague is today.  She told me he is fine.  I rest my case.

Who are We to Advocate For?

Advocates for Patients

Part three of the FamilyCentered Patient Advocacy Training came with enthusiasm from the group.  By the third evening, though tired from a long day’s work, each participant seemed glad to be there and were now getting to know each other.  A mix of classwork, conversation and lecture, each shared experience with the group is based on truth.  With over 700 hours at the bedside of patients and hundreds of hours in the past 20 years of my patient safety work in the community, there are more than enough stories to share and learn from.  

To be respectful of the people who have shared their stories, or who have allowed me to be part of their hospitalization, it is very important to me that each story and experience is given the utmost respect.  I often remind the group that this is personal, and we are learning from real experiences.

This allows for during role play sudden, unexpected changes that a patient safety advocate must be ready for.  If all patient experiences went well, and there was no need for a partner at the bedside, than medical errors probably would not be the third leading cause of death in the country.  The reason more isn’t done, in my opinion, is because there are so many different ways that things can go wrong.  Advocates, especially patient safety advocates, need to be ready.

In this past session, a young man who missed the first two classes and came over an hour late to the last class wants to be an advocate.  We already went over almost everything we were going to - including ethics.  Our ethics is based on the Alliance ofProfessional Health Advocates (APHA)  Code of Ethics.   

In the last class, we discuss the case of a young transgender man who was hospitalized and the situation turns to the possibility of sharing a hospital room with a non-transgender person.   I explain at the beginning of this session that we may not agree with how someone lives, but professional (some in the group will not become professional advocates) need to be respectful that they are in need of services and we do not discriminate (Ethics #9). In this part of the class, the advocates-in-training work this out.

When the class was over and everyone left, the young man came to me with an older female friend who also took the class and who he obviously looked up to and shared his concern over the experience of a transgender person having the right to choose his room.  (There are no quotes here-just my memory of the conversation).

The young man (possibly just out of high school) told me about his long term illness, on-going hospitalizations and concern that his rights might be violated were he to be forced to share a room with a transgender person.  Why are they the only ones’ who have rights he asked me repeatedly?

As a young black man, I tried to use that as an example.  Would a white man be able to say he did not want to be in the room with a black man, Asian man or Hispanic man? His friend, the older woman said that was different because in a hospital, patients are exposed and may be naked.  They also seemed offended that I would use this comparison.

I realized that after a discussion, I was not going to change their mind so I decided to listen and become educated.  What was this they were so against?  Something I could not possibly understand in the few short minutes.  I was grateful to come face to face with someone who shared their views which were not mine.  Whether or not I believed in the same principles as them.  We all walk this earth together and there are people with different views.

I asked if they would be willing to be an advocate for a transgender person and they both said “no”.

Then I had to think about that question for myself.  Would I be willing to be an advocate for them, if they wanted their room changed because of who was in the next bed.

I welcome your feedback but please say who you are for an on-going discussion.

Next class starts August 3, 5:30 PM

Register Here

Adding to the Transgender Bathroom Conversation

People Who Are Transgender & Bathrooms is That Today's Priority?

Why does the lives of transgender people affect all of us?  Why does it matter to all non transgender people where a transgender person uses the bathroom?  Because it is more than using the bathroom, it is about a society who doesn’t understand and instead of learning, builds a wall. Today it’s about people who are transgender, tomorrow will be about something else.  Leave things as they’ve always been and maybe it will all go away?  Well it won’t go away so we need to be talking about it.

I have been writing about experiences of people who are transgender since 2009 as they use the healthcare system. I had the opportunity at that time to speak about my experiences at the Transgender Day of Remembrance honoring people who are transgender and are murdered because of who they are.

If there is a fear of men, dressing up as a woman to commit a crime in the ladies room, men can do that now.  What is stopping a criminal from dressing in women’s clothing and stalking a rest room now?  This is not about being a person who is transgender, it’s about not having the resources to fight crime. It’s another way for the same people who are voted in to keep us safe by hiring enough protection now being told they must protect us from criminals – not transgender people. 

People who are transgender (in my experience) when using the bathroom they do what they have to do and get out.  There is no conversation and no one is exposed. Personally it’s probably better if we all do that!

Some questions come up in healthcare and how hospitals are supposed to find private rooms for patients who are transgender.  Yes, that would be ideal for all patients to be in private rooms to avoid the spread of infection and for privacy.  But, has anyone been to an emergency room where people lay sometimes for hours (or even days) and are separated by a curtain, all their business is being heard and sometimes their bed is in a hallway! 

When I spoke in another country about patient safety I realized, maybe too late I probably shouldn’t be speaking about people who are transgender or some other topics I spoke about.  We have to be sensitive to other cultures.  I may not approve of their having 4 wives or that women can’t drive but it’s the respect for each other that we need to be focusing on.   

The public must be more tolerant that we are walking this earth together and need to be respectful of each other even if it’s not comfortable.  More attention needs to be on the side of acceptance.  (If you are reading this, you are probably there already)

Is Your hospital an A or Clean?

Hospital Report Cards

Another release of hospital report cards can leave you shocked that a hospital you thought was wonderful, is now reported at a “C” or worse.  A hospital where you were injured, the nurses were not available to you or you got a hospital acquired infection is now reported to have an “A”.  What does this mean to the average patient and / or family?

It means plenty, and it means nothing.  How do you choose your hospital?  It’s probably where your doctor tells you he wants you to go.  Some people may then look at the Department of Health website, or Leapfrog hospital report cards and then what?  If you don’t like what you see will you tell your doctor you don’t want to go?  Will you look for a new doctor in the midst of a heart attack?  Maybe you can start looking for a new doctor who is affiliated with the A rated hospitals now, just to find out that if you were admitted, your doctor doesn’t go there to visit you because they have hospitalists working there.

I think the report cards are for the hospitals to brag to each other.  They use this as an opportunity to market in the news or on a commercial.  But, even with that, its buyer beware.  Hospital report cards don’t guarantee patient safety for each patient.  It’s just another tool to help make a decision. 

There is no guarantee even the hospitals with an A rating year after year there won’t be a medication mix up, a surgical error or a patient won’t get an infection.   There is no guarantee that the food tray will be within reach, the nurse will remember to wash her hands or the garbage won’t overflow.  There is no guarantee that you will be treated with dignity by every employee or you will understand your medication or discharge process.  There is never a guarantee.  Just keep vigilant, active in your care, have your family and / or friends as your support system and chances are things might go better than expected – at any hospital.

Bring Back Trust

When the Trust is Gone

I recently bought pens from a company I have been doing business with for years.  The price was right, I was promised extra’s and it would come in time for a fair we were holding. 

They came on time, the day before the fair, but when I opened the box, they were the wrong color, missing the promised free logo and a word was spelled incorrectly.  I was angry and immediately called the company with my concerns.  There was a promise to call back the next day.  Five days later and still nothing.  Now it’s not the error that has me angry.  That could have been handled with an apology and explanation.  It’s the lack of sincerity to make it right.  The disrespect of not calling back and ironically, where should I buy my pens now?

When we use the healthcare system and things go wrong, there is a similar dilemma.  If I don’t “trust” the people caring for me, where do I go?  Some people might say that after a bad outcome they don’t want others to suffer the same thing.  I know in my case, after my son died because of his medical care, I needed to trust again.  I hear in many people’s plea for answers, courtesy and respect, they are also looking to trust the system and the people who work in it.

Customer service has come a long way in some hospitals and throughout the healthcare system.  But learning to navigate it is troubling.  Some of my most recent calls are asking who the patient’s family should call to get answers to questions or a response to concerns.  The Patient Advocate, Patient Representative and now the Patient Experience Department.  Just try calling and asking for customer service and see who you get.

Feel free to share your experience.

Another Task Force

Is it a Task Force We Need?

A gentleman called me one afternoon. He was angry that his doctor would not fill his prescription for pain killers.  He didn’t trust his doctor anymore and wondered if his doctor of 15 years was mad at him because he was getting a second opinion.  I asked if his second opinion was to get medication and he said “yes”.  He swore to me that he is not addicted.  I listened carefully, let him tell his story and then asked him “how many people who are addicted, do you think are going to say they are addicted?”  He agreed.

An elderly gentleman told me that when he was on vacation, he ran out of pain pills and thought he was going through withdrawal.  He described a terrible experience.  When I spent some time researching what steps he might take and got back to him with some places that might assist, he said he didn’t want to get off his medication.  They are doing for him what they are supposed to – keeping him from feeling pain.

Nassau and Suffolk Counties have developed a heroin Task Force because of the epidemic of heroin overdoses on Long Island.  They are charged with investigating every heroin overdose on the Island in hopes of tracking the drugs to its source.

Now who wants to be the next overdose that will be “investigated”? Who wants to volunteer their child?  Why isn’t the source being investigated before the prescription – the very first prescription is filled, the public has to take medication safety seriously.

A recent Newsday article explains that the epidemic of heroin overdoses started with opiates such as OxyContin.  In 2012 it is said that over 2 million people were addicted.  A recent AARP article tells us that 46 Americans overdose on pain killers each day!

When I was sitting at the bedside of a patient leaving the hospital, the nurse called in her prescription ahead of time so it would be ready.  No warning, no instructions to be aware of addiction or dependency.  I was given a bottle of pills after my surgery.  No one asked who will be helping you with this prescription?  Who will be your DMM / Designated Medication Manager?

So the answer is to continue writing the prescriptions. Allowing patients to become dependent and then accuse them of “doctor shopping” to get their medications.  Punish doctors who want to give them medication or arrest people for selling pills to feed their heroin habit.  And this is where money will be spent?  On yet another task force?

Listen to this one young man, Steve Dodge, as he tells the reporter where he got started, on pain killers in the ninth grade Video.  It doesn't seem like anyone is listening to him!

Imagine if the task force focused on Before the Prescription is written?  Imagine if every patient was asked who will be your DMM and help you?  They will see if you are on your medications too long?  They will see if you are taking them correctly?  They can read that small print that the patient can’t see and bring the long list of medications, as well as pain killers to the pharmacist for review or to the doctor.

Imagine if we were able to control the problem before it became a problem and not after the next person dies?  But maybe that’s not where the money is?  I have been ignored by the Nassau County Health Commissioner when I went to see him about this.  I guess they want to put the money into another “task force”.

Maybe a discussion about medication safety on Long Island will open up some awareness BEFORE THE PRESCRIPTION IS WRITTEN

Swiss Cheese and Patient Safety

What Does Swiss Cheese Have to Do With Patient Safety?

I don’t comment on specific medical error cases. Too often details come out later that we are unaware of.  We rarely get all the details in the media.   But, it does seem like the fact here is that a child had the wrong procedure done in the hospital and the doctor apologized.  Mix-Up Leads to Surgical Procedure on Wrong Baby

When it comes to patient safety and medical errors, these are the exact stories we are talking about that even patients and families can learn from.

In the PULSE of NY Family Centered Patient Advocacy Training, participants will learn about the SwissCheese Model of patient safety.  With all the safety process in place, how can this error reach the patient?  Too often it does and we, the patient and our families MUST learn how and why this happens so it doesn’t continue.  At any time anyone, including the patient or family must feel empowered to say “stop” something doesn’t seem right. 

At any time patients, their family and / or their advocate must understand the Swiss Cheese Model so they are aware of how errors happen.  Whether it is getting the wrong medication, the wrong procedure or even when hospital staff start discharging the wrong patient, if we don’t talk about it, it will continue.  Yes, these incidence will make the news but sadly not for the right reason.  We MUST use these stories to educate and advocate for patient safety.

Over and over again the healthcare system proves that they need the patient and family involved but sadly too often we are excluded from the conversation.

If you can join us for the next conversation and training, please register now – we always fill up.  Family Centered Patient Advocacy Training

Communication for Better Care

Respect and Communication in Medical Care

It’s not always about medical errors.  There are many opportunities for care to be less than OK when we use the healthcare system.  I have said it before, and I will say it again; no two cases are identical when it comes to unplanned results. So many problems can stem back to communication, and poor communication can be perceived as poor care.

A man does not want to leave the hospital and waits for a conversation with the social worker.  Hours go by and he is still waiting.  A person with nothing to do counts the minutes while the social worker is trying to help, without reporting back, the patient feels ignored. The hospital visit begins to spiral out of control because the patient is angry.

The patient doesn’t keep track of when he receives his medication and the nurse doesn’t tell him what medications he is getting.  When the patient thinks he was double dosed on his medication, the rest of his hospitalization is spent looking for additional errors.

A patient has questions but the nurse leaves the room before he gets to ask.  Now he feels ignored.

A patient needs to use the bathroom.  When it takes too long, according to the patient, for someone to come, the patient feels ignored and neglected.  An apology could have helped the patient feel respected.  If the CNA was apologetic instead of annoyed, the patient may have actually been sympathetic to the overworked nurse assistant.

How patients are treated very often make up the patient experience.  Kindness and respect can go a long way and may actually change an outcome.  A nurse who is rushed, a doctor who is not approachable may be closing doors to a patient sharing important information.

Hospitality in healthcare,  whether a smile or hello need to be taught early in training and reinforced constantly.  Patients and their family should “assume good intentions” and give staff an opportunity to be kind and respectful and be kind and respectful back.

As an advocate,  the intervention may be just to keep communication open, apologize for each side, and remind each party of the stresses during this time.  We should not be telling someone not to be angry, but instead acknowledge the anger and frustration and then offer to help get answers.  Telling someone how to feel is once again taking their independence away.  Allow a patient to be angry and frustrated.  Once their feelings are justified, they can usually be easily become more reasonable.

Planning for Home Care x

Listening to Her Words

When I answered the phone I could hear the panic and desperation in the woman’s voice.  I have met her at programs PULSE has hosted and knew that she is highly educated and by my standards very bright.  What could she possibly be so frantic about?

Her husband was hospitalized and coming home needing home care services.  Now she needs surgery and will be off her foot for a few weeks.  How will she care for her elderly husband?  Her concerns were reasonable but who can she share this panic with that she felt was unreasonable?

This woman, who has always been in control was feeling out of control.  A very reasonable feeling when already scared for her husband and now herself.  She didn’t want to hear the words “don’t worry” which is the reaction of most people.  She didn’t know it, I did, that she wanted to know how to get back in control.  That’s what we did.  I was surprised to learn she already had a home care agency picked out to help around the house for herself and her husband.  So what was I there for?

By allowing her to talk, prompting her with questions, I learned the representative of the home care agency was coming to visit.  By listening, I learned she was not prepared for that interview.  Together we thought of questions and what her, and her husband’s needs might be.  Interviewing the people from the home care agency as well as having a stranger in her home caring for her husband what was causing anxiety.  Helping her control this situation, unrelated to her surgery or her husband’s illness is what helped her through.

We can’t assume that we know what is upsetting someone.  Believing it was her concern about surgery or her sick husband would have wasted valuable time and would have steered her into a direction she didn’t need to go.

With her list of questions ready for the person from the home care agency, and her requests for how they should behave in her home, she now felt better and back in control.