Sunday, November 22, 2020

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?

Saturday, September 12, 2020

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

Tuesday, August 4, 2020

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.

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