The Missing Link

 

We Found the Missing Link By Ilene Corina, BCPA, President, Pulse Center for Patient Safety Education & Advocacy

When my world became about patient safety thirty years ago, it wasn’t only because of my personal experience. It became important because, by talking to others, I heard of many other stories where medical care went wrong or mistakes were made, and though the patients or their families saw it coming, they did not feel empowered enough to say something. Many of these people who lost loved ones or experienced harm worked in healthcare. Sure, we are in a pandemic now and that is the health emergency we all face. Many in society, myself included, are fearful for our own health and that of our loved ones. No one wants to hear that their beloved family member has Covid. But are you prepared if you or your family were to become patients? As I began attending medical — primarily patient safety — conferences over twenty years ago (my first was in 1999), I learned how errors happen from the people who were involved with causing them and studying them. I grew passionate about bringing that information back to the public, but it has been futile. Most people — understandably, perhaps — avoid planning for the probability they might ever be a sick or injured patient. But if they wait until its too late, they are not in a physical or emotional state to help themselves. I have spent many years sitting at patients’ bedsides, so I have seen what can happen. Going on doctor visits, helping people prepare for surgery, sitting with people in wheelchairs, people with limited English, people who are homeless and people who are transgender, I have seen how they were treated and how care can go wrong. Years ago, I believed that if the world became filled with patient advocates, that would be the missing piece, the link between the sick, injured or aging society and the complex, overworked, error-riddled healthcare system. The training we have offered the community over the years has helped people with no medical background prepare to help a loved one through the healthcare system or, in many cases, to become professional patient advocates. Maybe my old dream will become a reality: more advocates are coming and many are here already. Patient advocates can focus on many areas, such as legal, financial, medical and care management. There are the social workers, medical, support, self-trained, and Board Certified. Some specialize in rare diseases, some in geriatrics, and some in pediatrics. You can find them through associations that support patient advocates. Here are a few, and I hope you will join us on December 14th to hear from the founder of Greater National Advocates. AdvoConnect  Greater National Advocates  Washington State Health Advocacy Association (WASHAA)

Payoff For Wrongful Death, Will That Make it Better? Aftermath Explains It

 

I just watched Arnold Schwarzenegger in the movie Aftermath.  The movie is about a man who loses his family in a terrible accident that killed 271 passengers on two planes.  I’m not giving away anything that isn’t in the trailer.  A person is the cause of the accident.  A terrible mistake.  The devastated father and husband (Schwarzenegger) seeks an apology and is offered payment instead.  At some point he is offered money in exchange for a lawsuit.  The movie is based on his search for an apology.  

There are similarities in this movie to what families go through following the deaths of loved ones due to the medical care they receive.  A terrible accident because of someone’s error, a misjudgment or a system breakdown that causes injury or death is often responded to first with silence, an offer of payment and signing an order to not disclose the amount of the payment and sometimes to never speak about the incident.

Yet, many people say they want to be sure that the incident will never happen again or, no other family has to suffer as they did.  I’m not sure how that will happen when the family is paid off but of course, the attorneys need to be paid and that’s how they get paid, out of the settlement.

If you watch Aftermath, and you have experienced the loss of a family member because of the medical care they received, consider leaving a message on the similarities if you see it.  And can anyone learn from this comparison?

Bias and Discrimination - My View

Racism, Bias and Discrimination

I just listened to a news program during which a Black man was interviewed saying that he is sick of the rioting.  He believes there should be protests but violence is not appropriate.  He understood the anger because he too has been stopped and profiled numerous times by police.  He knew he did nothing wrong but still he was scared of what might happen to him.

The next segment of the show was about the large numbers of Black and Hispanic people dying from Covid-19.  Most of the news segments related to the underlying health problems the black community may have which are worse now with Covid-19.

I remember hearing months ago, when the pandemic was at its worst, that doctors needed to make the painful decision: who would get medical care because they could be saved and who would not receive care because they could not be helped.  Now I wonder: could some doctors also be making that choice because of the same thought process a white police officer might have when engaging a black man?

Isn’t it possible that our trusted healthcare professionals are also experiencing bias when it comes to seeing a patient who doesn’t look like them or their family?

I don’t know the answers but I do hope it is a way for us to recognize how we feel when we see someone who looks different from us, and in any aspect of our daily lives to recognize that this person is important.  Whether it’s a police officer or a doctor or anyone else who works with the public or lives in this society, we must recognize there may be underlying feelings and emotions that need to be examined

That’s all.

This short video might help explain why this happens. 

Understanding unconscious bias

Front Line Doctors are Hidden Doctors

Why is Stella Immanuel very, very important?

I can only share with you my very personal thoughts about Stella Immanuel and the Front Line Doctors.  I won’t discuss the content of what they are promoting, but instead, the fact that they have been given a platform to share what they believe.  And that they are practicing “medicine” in a community that serves people like anyone reading this now.

If what they say upsets you than think about this; they may have been promoting their beliefs and medical services for years to people who are not aware of what is correct or not correct when it comes to medical care.

For over 20 years I have been saying that when we, members of the public, (whether we work in healthcare or not), become patients, what happens behind the “curtain” of a doctor’s care is private and rarely discussed with others.

Not knowing if a doctor is giving appropriate, helpful information is crucial to continuing patterns of substandard care.  In our TakeCHARGE Ambassador training with young people this past week, a girl shared that her doctor was treating her with care that did not improve her condition.  When she spoke with others who had this same condition, she became empowered to change doctors. How many people believe they are doomed to a life of pain or a deadly disease because their beloved, trusted doctor doesn’t know what cures are available?  In the case of Stella Immanuel, for how long has she been able to make people believe what she has said is true, because they don’t know anything different?  After all, she is a doctor and shouldn’t she know best?

The fact is, until we all start talking about patient care and what to expect when we are with our doctors, they are free to spew misinformation or treat our family members inappropriately, incorrectly or even just wrongly.  But health care is not like driving a car. We learn to drive with practice and with a test and know when someone is not driving correctly.

We are all taught the rules of the road.  When we walk into a doctor’s care we are at the mercy of their advice and treatment.

I started working with young people in 2006 when two sisters called their doctor “creepy” during a patient empowerment presentation. Since then we learned about the Olympic gymnasts and what they suffered at the hands of their doctor.  My research has found that the Olympic gymnasts case was not an isolated case. 

You may say that this is not possible, but when someone doesn’t know what an exam is supposed to be like, it gives clinicians an opportunity to make up the rules as they go along.

Starting in 2010 I began working with some people from the transgender community and again was able to learn that the details of medical care and experiences were not being shared.  When we opened up the conversation, we learned that many exams and plans of care were different.  Whether or not there are standards of care the patients do not know what they are.

The Pulse Patient Activationthrough Community Conversations (PACC) was designed for this reason: so people can share what has worked for them.  This is not about giving advice, or what may be seen as medical information or a diagnosis.  A PACC is designed to discuss what has worked for you or me, or to find out what has worked for others.  When participants who realize they are getting inappropriate or unhelpful care, they then become empowered to change clinicians or at least ask for what they want.

I may hear that your medication worked for you when we have the same or a similar diagnosis, and can now go back to my doctor and ask if I should try that medication.  Some doctors may be grateful that you brought this information to their attention and for those who are not, it may help to decide if this is a doctor you want to continue to see.

I wonder how Dr. Immanuel would react if her patient did not want to be treated with the medication she was suggesting, that many feel is not appropriate.  A doctor not willing to listen or partner is a doctor I am not willing to continue seeing. But if I were to call her “crazy”, wouldn’t I be just as guilty — of diagnosing someone when I do not have a license to do so? If I said that suggesting her way of doing things is “wrong”, am I now giving medical advice, which is not appropriate for me to do?

As a patient’s advocate, part of my role is to support a patient’s decisions and if I can’t support what someone wants to do for their care or treatment, I should not be their advocate. 

I’m not suggesting you go to medical school, but I am suggesting we start discussing our care through PACC’s so we know what has worked, or not worked for others.

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.