Wednesday, June 10, 2020

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. 

Friday, April 17, 2020

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

Monday, February 24, 2020

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

12 Leaders in Nursing and Medicine To Honor This Black History Month

68 African American leaders in healthcare | 2019Why America Needs More Black Doctors

68 African American leaders in healthcare | 2019

Monday, January 20, 2020

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.

Sunday, December 1, 2019

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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