Politics and Patient Advocacy

What does today’s politics have to do with being a patient advocate?

In our Family Centered Patient Advocacy Training which is based on being a Patient Safety Advocate for friends, family or becoming a professional, we stress the importance of being a good listener and being objective.  This past election year and the past weeks have become a great test for these skills.

As I listen to the news, I hear opposing comments and ideas. Depending on what channel I watch there can be very strong opinions one way or another. One reporter or speaker won’t make me change my mind, won’t make me feel differently, but it gives me the skills to try to understand that what is being said is  important to the people saying it and the people supporting them.

I am glad that there are people speaking out on their beliefs.  That is important to our country.  It has never been OK to call names and poke fun of people’s looks or behavior when that is not the focus of the issues.  It loses credibility when I hear about the way a person dresses, walks or laughs and that becomes part of the discussion.

Being a patient’s advocate means being able to focus on facts and what really matters to the patient. Being objective which may mean putting your own feelings aside to listen and then allow a patient to make their own decisions, even if it’s not what you would want for yourself - or them. 

If you are a friend or family member acting as an advocate for a loved one who wants to have surgery but you don't think its a good idea, it means listening carefully and trying to understand what they want and why they want it that way. If you can’t get past your own needs then you may not be the best advocate.  Find an advocate that can be objective and right for the whole family. 

As I watch what looks like a civil war starting on our own soil, I want to get some good out of this.  It may be to just practice my listening.

When One Door Closes

A Letter to My Doctor

Today I sent the following letter to a doctor.  I hope others are encouraged to share why they leave a practice before they go.

Dear Dr. XXXXXXXX

I am requesting that my medical records be forwarded to XXXXXXXXXXXXXXXXX

I will not be able to use your services any longer.  Please allow me to explain why.
First, I should explain how I chose you as a physician — and possibly a surgeon — that I would use.  I put a call out to friends and family for a recommendation.  Your name came up.  Even though our state physician profile lists you as having made five malpractice payments in the past six years, three payments above average, I did recognize that your membership of five prestigious organizations such as the American Medical Association, the Medical Society of State of NY and the Nassau County Medical Society might mean patient safety was important to you. 

I thought it would be important to share with you why I am leaving and can’t recommend your practice.

      1.  I found it offensive and disturbing that my reason for seeing you was discussed at the front desk.  I knew why other patients were there because it is asked when signing in, and written down where the next person can see; also, the receptionist confirmed aloud what my appointment was about.  Although this is not a HIPAA violation it would be a breach of privacy were there someone present from my circle of friends or family with whom I didn’t want to share my business. Imagine if a gynecologist’s receptionist asked whether a patient was there for a pap test or a yeast infection, or to see if she were pregnant.  These discussions belong inside your office.

     2. Although your x-ray technician was very nice, he seemed rushed and impatient with other staff.  He told your PA that he was waiting for me for a half hour.  I was not even there for 10 minutes.  He also did not describe what was happening to me, what he would do, or why he would do it.  He said almost nothing to me.  A brief explanation of what would be happening while he was working – thus taking no extra time — would have been helpful, especially if I were someone feeling scared or alone. It also would have made a great impact on my experience.

     3. I don’t appreciate being called “Doll” after every sentence by a staff person who is half my age (or any staff person).  If she couldn’t remember my name, there are safer ways of confirming she has the correct person.

     4. An unknown, elderly woman in a wheelchair was wheeled into my room while I was waiting for you.  I had to stop the staff person from bringing her in.  He apologized and said he had the wrong room.  This gives the impression that your office is in some disarray and there are on-going problems.

     5. On my first visit with you, you were obviously very sick with a serious head cold and let me know that.  I understand that it is not easy to take off from work, yet you never washed your hands and even after blowing your nose you went back onto the computer in your room without cleaning your hands.  Then, you left the room touching the door knob.
   
 Dr. XXX, this letter is not being sent as an official complaint to the Office of Professional Medical Conduct, but instead offers an opportunity to review practices that can be viewed as potential hazards to your reputation, your staff, and most importantly your patients. It is very difficult for me to write this letter but I think it is very important that these issues of respect, courtesy and safety are addressed.

Thank you for your time.

Sincerely,
Ilene Corina, Patient Safety Advocate

CC:
American Medical Association
Medical Society of State of NY
Nassau County Medical Society

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)