Monday, December 7, 2020

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.

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.