Be Curious

The Country is in Turmoil so Be Curious

By Ilene Corina, BCPA, President, Pulse CPSEA

The country is in turmoil.  I won’t comment specifically on what is happening now.  There are enough comments and opinions.  What I want to share is how we must be careful when we think we are showing empathy by saying we understand how someone else feels, what they are going through or what it is like for them.  When someone is experiencing an injustice, a personal experience or even an illness, you don’t know.   

The best we can do is “be curious”.  Find out what the other person is experiencing by asking.  As a patient advocate and someone who assists families supporting each other one of the worst things I hear someone say in trying to support someone is “I know how you feel”.

These words can close down a conversation because if you know how someone feels, they don’t need to share with you how they feel.  Though empathy means, being aware of, sensitive to, and experiencing the feelings of another, and you may tell someone that you share their feelings, your experience may be very different.  One person can experience COVID-19 completely differently than someone else because of their underlying medical conditions, family support or symptoms.

As an advocate I am aware that one person may experience an illness, even if diagnosed as identical to someone else’s, very differently, due to their different circumstances.  Finances, family support, insurance and other conditions may all cause different outcomes and emotions — which means one person does not know what another person is experiencing.

So, I suggest that no matter what the situation — whether it is about race, religion, political beliefs, health or health care — we “be curious” and learn what it’s like to be someone else.  Go one step further and try not to share what you think, or your experience, and just listen to the other person. 

Practice Your Patient Advocacy Skills Now: Communication is Crucial in Supporting Others

Elaine was telling her friend that she was really upset about being quarantined and stuck at home all day. Elaine couldn’t wait for this to be over, I heard her say.

Her friend Dana immediately responded with, “I know how you feel.” I assumed she was trying to be helpful, but Dana continued: “I can’t stand this. I miss my friends at work, my house is just too small for all of us all day and we are all getting on each others’ nerves.”

Dana thought she was being helpful and empathizing with Elaine, but instead, she was not. She took the attention away from her friend and brought it to herself. She said she knew how her friend felt and shared her friend’s frustration, yet never listened to what her friend’s frustration was. In trying to connect with her friend, Dana did just the opposite.

Elaine actually was sad because she had lost her mother shortly before the quarantine started, and being alone with her thoughts all day long caused her sadness. The conversation never went back to what was disturbing Elaine. It was now all about Dana.

Don’t Talk, Listen

This is not uncommon, and as patient advocates one of the things we need to do is avoid believing we know what someone else is thinking or how they are feeling. No matter what the topic is, if you don’t keep the conversation about the other person or if you to start talk about yourself and your own experience, you will take the conversation away from the person you are trying to connect with.

In our Pulse Family-Centered Patient Advocacy classes, communication is a key part of the training. Listening without interrupting, encouraging the other person to continue a conversation where they want to take it and not steering them somewhere else isn’t easy, but it is important to being a good listener and connecting with and helping others.

I usually use the example of the woman who tells her adult daughter that she doesn’t want to take her medication. The adult daughter gives her reasons why she should take her medication. “You need to take it, Mom, so you don’t end up in the hospital again,” or “Mother, you know it’s important to take the medication.” Instead, the daughter could ask, “Tell me what’s going on that means you don’t want to take the medication.” It could be that it is a sad reminder that she even needs medication, or that the medication causes other medical problems, or maybe it’s too expensive. By not opening the conversation with words like “tell me more”, people who want to help often lose a good opportunity to do so by not learning more.

When Larry was sharing his experience of being in a car accident, his brother said that he knew how Larry felt because Larry’s insurance “wouldn’t cover all the damage and his insurance premiums would go up.” In fact, Larry was much more concerned that he had caused serious injury or damage to others. The brother had closed Larry down from sharing his real concerns, which was not supportive at all.

Be Curious

By being curious we can be supportive. At a time such as we are living in now, almost everyone has concerns in common. Financial concerns, national upset, fears of health problems for ourselves and loved ones and even the possibility of death — our own or that of someone we care about. Still, there are many ways to offer support and empathy to others. Allowing someone to share what is actually upsetting them is important to supporting them.

The next time someone says that they are getting frustrated, angry, upset or . . . (fill in the feeling), look them in the eye, put down your cell phone and — as we teach at Pulse Center for Patient Safety Education & Advocacy — ask them to tell you more. No advice, no trying to solve the problem, just listen.

Ilene Corina

Black History Month

Black History Month

February is Black History Month, a time to celebrate the accomplishments of African Americans and the important roles black people have held throughout our country. 

Have you ever heard someone say, “I didn’t notice you were black”?  What a disservice we do to others when we don’t even notice the color of their skin.

If we don’t notice the color of someone’s skin than we may miss out on finding out what it’s like to be them. 

As a patient’s advocate, I never thought it mattered in my early years until I stood at the bedside and watched white nurses fuss with a white patient and somewhat ignore a black patient. Now, this could have been my imagination but either way, it stayed with me.

As I sat in a room of thirty black people while my friend and colleague, a black nurse, did a Pulse presentation, I will never forget how someone said something completely inappropriate for the topic, and because I felt like the awkward “minority” in the room, I kept silent and didn’t correct her. The only reason was because of the color of my skin. My friend said to me with a smile, “Now you know how it feels.”

I was in a room of people who all looked different from me and though it shouldn’t have mattered, my behavior was different. They were different. When a black female doctor walked into the room for my examination a number of years ago, I was taken aback.  She was a wonderful doctor as it turned out, but I was uncomfortable, for a moment, that we looked different. 

This should never matter, but it does.  When someone looks different we might think their beliefs are different or their upbringing is different and that might be true; still, we can respect each other, like each other and love each other even with these differences.  We need to be sure we are looking into each other’s hearts and being curious about others.  Don’t assume you know what they need or what their life has been like – no matter what their skin color is and if it is different, reach out even further and learn from them. Greatness comes in all colors. We need to honor that.  I hope this reminder helps.

Don't miss out on this important information worth sharing:

11 African Americans Who Made Medical History   https://www.auamed.org/blog/african-american-doctors/

Top 25 Minority Executives in Healthcare for 2016  https://www.modernhealthcare.com/article/20160213/MAGAZINE/302139955/top-25-minority-executives-in-healthcare-for-2016-text-list

12 Leaders in Nursing and Medicine To Honor This Black History Month   https://nurse.org/articles/black-history-month-nursing-leaders/

68 African American leaders in healthcare | 2019Why America Needs More Black Doctors  https://www.usnews.com/news/healthiest-communities/articles/2018-08-31/why-america-needs-more-black-doctors

68 African American leaders in healthcare | 2019

 https://www.beckershospitalreview.com/lists/69-african-american-leaders-in-healthcare-2019.html

After decades of effort, African-American enrollment in medical school still lags   https://www.usatoday.com/story/news/health/2019/02/28/medical-school-student-african-american-enrollment-black-doctors-health-disparity/2841925002/

Can We Predict the Sexual Predator?

No Prediction of a Sexual Predator 

Evelyn Yang (married to presidential candidate Andrew Yang) has come out about being sexually assaulted by her physician. She has a public platform so I believe it’s wonderful that she would use that. It’s important, especially after the awful experience of the Olympic gymnasts. 

Those stories, both Evelyn Yang’s and the gymnasts’, though devastating to many, should not come as a surprise. I wrote an article about this ongoing problem but also have personal experience where some of the problems are - and I have been concerned about this for years. 

Years ago – in 2005 or 2006 – I was speaking to a group of teenagers about preparing as a patient, when two sisters called their doctor “creepy”. Having only sons, I realized I really didn’t know what a medical exam should be for girls. First I invited a gynecologist in to speak to the young people and their parents, and then my own children’s pediatrician to talk about their expectations in the doctor’s office.

I learned that children should be alone with their doctor to talk about private things, yet they can be dressed and they need to know what the exam is about and how it will be conducted.

With my dear friend Susan, a high school social worker, we worked with a team to then put together Teaching Young People to Become I-Patients: “Informed and Involved”. As early as 2006, we were conducting these 30-minute programs in the high school where Susan worked, and later in other schools.

Early in the history of Pulse support groups and as years went on, I received reports from women who were assaulted by their doctors. In meetings, or even social events, when people found out what I did, they shared their stories.

Out of curiosity, I went into a police station and asked the officer behind the desk what they would do if a woman was sexually assaulted by her doctor. The officer said they don’t “handle that” and she would need to go to the Department of Health. I didn’t pursue it and dropped it.

One day, I was with a doctor in his office during an exam and he did something completely inappropriate.    I was stunned and angry and was absolutely violated. I left in complete shock, never spoke about it, and never went back. Like many women,  I never shared this because who would care? What proof did I have? I just never went back and found out later that the doctor was no longer with that practice. Maybe someone else was braver than I was?

A few years later, I was to go for a checkup and saw a doctor I had never seen before. This was not to be a major exam and though I am rarely, if ever asked to remove all my clothing, this doctor did ask that. I assumed nothing, and even though I was not comfortable, I did what was asked. Again, what happened in that room was an absolute violation and assault. I pushed him away, got dressed and never went back again. I also never spoke about it again. I was shocked not only because of what happened but because I was nervous about being “disrespectful” to a physician. Both experiences were long ago and I still wonder who I could have ever told, that would have mattered and made a difference.

I am a survivor of rape (multiple times - same attacker) that happened while back in high school. In that case there were witnesses and the attacker admitted what he did. A few years later, I became involved in developing the local county’s rape crisis hotline. I was trained to take calls, meet victims in the emergency room and even follow them through the court system. This was in the early 80s, and I saw how victims were treated if it wasn’t an obvious assault. It always seemed that it was a bother to the police and the healthcare team if there wasn’t “proof”.

So, why is it important to me - for me - to share this now? Because for those who need to report sexual assault by someone who may be uncooperative — whether it’s a celebrity, a priest or a clinician — there needs to be a place in each community that can track these reports and be sure they are followed up.  If someone reports to the police that they were “touched” inappropriately by a clinician, will the patient be made to prove that is inappropriate when the patient willingly removed their clothing?

I know what exams are supposed to be like only because I have had numerous exams where I felt I was being treated respectfully. I still don’t know what is correct or not. Only what seems appropriate.

At Pulse, we have programs that do this, such as PACC  where we encourage people to talk about their experiences. Years ago, working with a support group of people who are transgender, I opened a conversation about their exams. The differences were incredible. No one seems to know what to expect. 

Healthcare professionals need to stop saying things like “no one wakes up in the morning wanting to hurt someone.” That is obviously not true and is an excuse for cover up.

Programs need to be set up where people can learn to be patients and know what to expect.

A system needs to be set up in every county to record incidences of abuse by clinicians and to support people who are not sure.

I welcome your comments and feedback.

World AIDS Day

World AIDS Day: and What I have Learned by Being with People Who Have HIV/AIDS

A few years ago, I did a Pulse PACC (Patient Activation through Community Conversations) with a group of thirteen participants all living with HIV /AIDS.  They chose topics that are important to them about receiving medical care so they can share their experience with others, learn what has worked for others, and learn ways to be an active participant in their own medical care.  There is no advice given.  Participants are permitted to only share what has already worked for them so no one hears the words “you should”.

One of the questions that was popular and checked off on the list was: Do you have a healthcare proxy and how did you choose that person?

When I read off the question (all questions are anonymous so no one knows who wants to talk about what) no one spoke.  I told them that five people wrote that this was important.  Finally, one young woman spoke.  “How can we choose someone to make decisions for us if we don’t want anyone to know we have this disease?”   

Her question stunned me.  Something I never thought about.  Others shared their similar thoughts and concerns out loud and the conversation became how other chose someone as a support person or to be listed on their proxy form.   Some even offered to be that person for the one’s who had no one.  The discussion then became what the healthcare proxy form is. I handed some forms out and learned a lot that day.

AIDS, in my generation is still a scary topic.  I remember when people died from HIV /AIDS, now they live with it.  Still, many people feel that they wear a sign on them that says that they are promiscuous, gay or a drug abuser.  We know now that none of that may be true – but even if it is, doesn’t everyone deserve safe care?  And, if we want safe care, we must be honest about our health and habits to the medical team without fear of being judged.

According to the World Health Organization almost 38 million people are living with HIV/AIDS worldwide.  In 2018, 770,000 people died from HIV-related illness which is over 50% fewer who died in 2004.  Talking about the disease, as any disease must be part of treating a patient safely.  Being honest and open about your health and healthcare must take priority.  People need to seek medical attention from clinicians who do not show a bias and have experience with the care you need.  If fear or embarrassment is an issue, people should bring a support person who could help a them feel in control and get the care needed.  The support person should know what the patient’s fears and concerns may be so the support person can be prepared to help address them.   And, if you know someone who may be nervous about seeing a clinician because they have HIV/ AIDS, offer to go with them to their doctor’s appointments.  Having a “team” with them could help.

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New Amsterdam TV Drama

NEW AMSTERDAM Television Drama

For the first time I watched New Amsterdam and was shocked at the content.

The title of this episode ‘Good Soldiers” was not the part that I watched that made me a fast fan.  It was the interwoven story line of a woman who had a “botched” surgery a number of years ago by a surgeon who was “protected” by his peers.  The surgeon continued working moving from hospital to hospital leaving a trail of medical injuries.   In this case, the woman has spent years in a wheelchair while the surgeon continued doing surgery often injuring other patients.  When Dr. Max GoodwIn, the Medical Director played by Ryan Eggold found out about this surgical screw up that happened years earlier, he started asking questions and found that there were cover ups.  Approaching the Dean of the medical school, Dr. 

Goodwin learned that the dean knew how bad things were but continued the cover up with his peers to “protect their own”.

Dr. Goodwin suggested the patient may start a lawsuit and thought it would be a good opportunity to change policy to become transparent and be honest with the patients.  Instead, a check was written to satisfy the woman.

There are many real-life aspects top this.

The cover ups:  It must be hard for a new person in the medical field to expect to be a whistleblower early in their career.  Who could they possibly trust to report what could -and maybe should be seen as a crime?  Injure or kill someone and cover it up is giving people in healthcare a license to kill.  I have heard this is not uncommon.  I too would have to wonder how do you go to someone with what may be half the facts and report something so horrible about someone who probably brings in millions of dollars a year to the hospital?

The check:  Should the hospital have written a check and stopped this whole story from getting out?  Should the woman have accepted a check to be quiet?  In a lawsuit people often sign what we call “gag orders” discouraging the injured party to not speak of the incident or the amount of the settlement.  When they sign, some people feel that they shouldn’t and are allowing the behavior to continue.  This may be true but why shouldn’t a person who wants to move on take the money and do that?  Some people want to fight it and will get less money.  It is a personal preference.  Unfortunately we rarely hear the whole story or all sides. Injury = money it’s not that simple.

So what happens when the woman takes the money and the doors get closed?  Is there retraining for staff?  Are all patients who used the doctor leaving a trail behind him of dead and injured called out on his/ her behavior?  What does a patient or family do to be sure “This doesn’t happen again” like so many people say they want?

Why doesn’t the media cover every story so others can feel safe?  When there is a train crash or a plane crash it makes the news, an investigation, every detail shared.  When medical errors kill people or injure the unsuspecting……………………….

No One is Saying Blame

It's Not About Blame

I went with some friends and colleagues  from Pulse Centerfor Patient Safety Education & Advocacy yesterday to meet with a businessman to talk about our brilliant ideas to improve patient safety.  After all, this is a public safety issue.  Patient safety and medical errors is not only focusing inside the hospitals, nursing homes and doctor’s office.  Patient safety starts long before a person becomes a patient.  We are people.  No matter our color, age, gender, bank account, career choice, path we have taken in life or education – we are all people.

It was interesting when this businessman realized we were not there to complain about the system.  He was ready for an argument – blame.  “No” we told him, “blame, accountability, anger and punishment all come after the fact.”  We are not there to blame or hold anyone accountable.  This is not what we do.  Our goal is to keep people from getting injured or worse.  Accountability, apology, disclosure all mean someone has been hurt and we have not done our job.  As a community based organization, we can’t expect to improve if we continue leaving it up to one side of the aisle to fix this 20 year discussion of medical errors. 

The public must be better involved.  At Pulse CPSEA we can help make that happen!  

RACIST E.R. DOC

From Boardroom to Bedside

We often hear from the owner or the person running a business how their staff behave.  “We don’t allow that behavior here” someone may say to an irate customer.

It’s not unusual for that statement to be shared to patients or their families who are not pleased with the care they are receiving.  Years ago, when I worked with people who were living with various physical disabilities as a patient advocate, someone in leadership at a hospital said to me, as well as the group he was presenting to, that nurses and nursing assistants take extra care of people who have disabilities.  They take extra time and address any special needs they might have at his hospital.

“So”, I asked him, “do you have extra staff to help these nurses or are they just told to work harder?”  His look was the answer I expected.

I was there because of the problems people with disabilities were having in their medical treatment and he was supposed to have the answers.

Another time, a hospital director explained that “we rarely, if ever see people who are transgender so we don’t need to address that here”. (See March 2015)   After my presentation which was touching on bias and disparities, I was asked by an employee “how do we address people who are transgender?”  When I asked why that was important to him, I learned he was in charge of the transport team and they see many people who they believe are transgender mostly in the emergency room.  Something leadership was not aware of.

I have heard what a hospital's policy is for handwashing and then watch how many staff do not wash.  By reporting this, at times, I have received thoughtful responses from the leadership, or the doctor themselves who I challenged.   This is how, I believe we, as patients can make change.

Hospital leadership (and I am careful to use the term leadership because a hospital or healthcare facility is usually made of brick.  The leadership is made up of humans and decision makers with their own feelings and needs) the human beings who are in charge of the healthcare system, often do not know what is happening at the bedside.  Many times, I have asked them to “take off your tie and go sit with a patient to see for yourself the comments and care your staff – good or bad – use in treating patients.”

I know when I worked at my last customer service job customers would speak to me about how lousy service was at times. The management didn’t know because we were addressing the unhappy customers for them with apologies - so improvements couldn’t be made because they didn’t know where the problems were.

Then I get a look at this video that has come out and wonder how long this PA has worked in this hospital.  How many complaints were mishandled and how many people have been injured or hurt?  Should they go back to any patient he has ever treated as they would if it was a disease that could be spread through dirty needles of unclean equipment?  Maybe all his patients who he ever treated should get a letter that reads “Dear patient, we found a parasite in our hospital and want to prevent this from spreading further”.

I only ask that though the majority of healthcare workers are kind, considerate and qualified, the expression “no one wakes up in the morning wanting to harm their patients” is never used again. There are good and bad people in every job, every color, every religion, every gender………….

Watch Video

In all fairness, the comments by the hospital are on their Facebook Page  https://www.facebook.com/MemorialHermann/photos/a.161161947712/10157102790052713/?type=3&theater

Letter to Another Doctor

Letter Sent to Another Doctor's Office

Opportunities for improvement can come when we address them.  Please address them!

Dear Management,

On August 8, 2019 I was contacted by a person who used your services because of a swollen pinky.  An x-ray was taken and the patient was told that the next finger over (the ring finger) was fractured and an infection had developed.  This patient was prescribed antibiotics and it was suggested they see an orthopedist specializing in hands because of the fracture, which they did.

As it turns out, the patient did not have a fractured finger (the x-ray was read incorrectly). The patient had gout, which needed medication, not an antibiotic.

Pulse CPSEA is a patient safety organization dedicated to raising awareness about patient safety through advocacy, education, and support.

The following information may be helpful to share among your staff.

• Medical errors are the third leading cause of death in the United States  
• 80,000 to 160,000 people are harmed due to misdiagnosis each year with 40,000 to   80,000 deaths each year caused by misdiagnosis 

Additional patient safety statistics, with references can be found at www.oneisanumber.org.    This letter and information are being sent to you in the hope that they may be used to improve knowledge and understanding as well as quality of care and patient safety in your office. I trust you will take my comments in the positive spirit with which they are offered. No official report will be filed at this time but I would appreciate a response indicating how this information was shared, and the steps taken to correct the concerns raised, so I can inform the person who contacted our office that it is, in fact, being addressed.

Thank you for your prompt attention to this matter.

Consent: What does it mean??

The Meaning of Consent

I was recently at the hospital with a patient who was getting a complex surgery.  The patient didn't seem to understand what was going to happen during or after surgery. Just before the surgery we saw the surgeon who was going to explain the procedure. The surgeon had the consent form on a clipboard ready for signing.

I offered to read the consent with or for the patient after the doctor explained the procedure.  The doctor did the explanation, handed the patient the forms and the patient signed without reading.

The AMA says:

The process of informed consent occurs when communication between a patient and physician results in the patient’s authorization or agreement to undergo a specific medical intervention.

https://www.ama-assn.org/delivering-care/ethics/informed-consent

To enable patients to participate meaningfully in decisions about health care, physicians have a responsibility to provide information and help patients understand their medical condition and options for treatment.

No where does it say that the patient who signs, actually understands the procedure or surgery only that they are authorizing the procedure /surgery.

So, does the consent mean that the patient understands the procedure and risks?  Maybe it means that to the clinician, To the patient it may mean only that they are giving permission.