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.

Bring Back Trust

When the Trust is Gone

I recently bought pens from a company I have been doing business with for years.  The price was right, I was promised extra’s and it would come in time for a fair we were holding. 

They came on time, the day before the fair, but when I opened the box, they were the wrong color, missing the promised free logo and a word was spelled incorrectly.  I was angry and immediately called the company with my concerns.  There was a promise to call back the next day.  Five days later and still nothing.  Now it’s not the error that has me angry.  That could have been handled with an apology and explanation.  It’s the lack of sincerity to make it right.  The disrespect of not calling back and ironically, where should I buy my pens now?

When we use the healthcare system and things go wrong, there is a similar dilemma.  If I don’t “trust” the people caring for me, where do I go?  Some people might say that after a bad outcome they don’t want others to suffer the same thing.  I know in my case, after my son died because of his medical care, I needed to trust again.  I hear in many people’s plea for answers, courtesy and respect, they are also looking to trust the system and the people who work in it.

Customer service has come a long way in some hospitals and throughout the healthcare system.  But learning to navigate it is troubling.  Some of my most recent calls are asking who the patient’s family should call to get answers to questions or a response to concerns.  The Patient Advocate, Patient Representative and now the Patient Experience Department.  Just try calling and asking for customer service and see who you get.

Feel free to share your experience.

Put Ice ON it

I Don't Get It

So I get my shot and I ask the doctor about any side effects.  She tells me it may swell and get red but ice and Motrin will help.  It is a bit uncomfortable so I begin sucking on ice cubes and tape a Motrin pill to the area that has swelled.  Just kidding!!!!!

But it’s really not a joke.  Many, many patients don’t get the doctor’s information correctly.  The way this was explained to me may have been confusing to someone who doesn’t know what to do with their directions, can’t read well or speak another language.  In all of our lives we often assume people know what we know.  That comes from using words that aren’t used by everyone or not encouraging someone to reflect back instructions or information.

As a patients advocate we need to be sure we are hearing exactly what the doctor or nurse is telling the patient to do.  Think of ways the information can be jumbled and assume the patient isn’t hearing it because it can get jumbled or they are distracted. 

If I were with an advocate when my doctor gave me instructions to just use ice and Motrin for pain, what are some of the things you could have said to help?

Doctor, can you explain exactly how much ice and how much Motrin?  Can you explain further what to do with the ice and Motrin?

Or

Doctor, how long should we use ice and Motrin or is there another medication we can use?

Ask the patient to explain what she will do.  “Ilene, what will you do with the ice and Motrin?” The response should be in front of the doctor so when I say I will suck on the ice, the doctor knows additional explanation is needed.

Thanks for reading!

What is a Patient Safety Advocate? A Good Listener

Patient Safety Advocacy; Listen!

Listening can sometimes be difficult. We often think of ourselves as a good listener because we are physically present when someone speaks. But being a good listener and a patient advocate are very different.

As an advocate, we need to really listen and hear what the patient is saying and even feeling. When hospitalized, it is important to always have a notebook handy. Taking notes when the patient says something like “I haven’t eaten since noon yesterday” you will have that information available if the patient is resting and the nurse or doctor come in and ask “when was the last time the patient ate”?

When the doctor comes in to speak with the patient, always ask if you can stay. This helps keep the patient in control. Plan on taking notes as the doctor and the patient speak. The doctor will ask if there are any more questions. Ask the doctor to come back if he or she will be in the building for a little bit longer. When they leave the room, you will probably say that you wish you asked about………………. Write it down. When the doctor sticks her head back in you will be ready with any additional questions.

Listen for the patient’s worries and fears. Try to never say “don’t worry” it’s confusing to hear those words. “How can I help you to not worry?” or “what will make you feel better?” can be words that are not only more soothing, but more productive.

The patient may have underlying fears that you aren’t aware of. Help the patient to find them and address them if they can. The worries may not be about the surgery itself but may in fact be about the bills, children at home or lost time at work. By saying “don’t worry” you aren’t helping to address any of that.

Finally, listening is also about hearing what the patient says. Don’t push the patient to eat or drink if this is not your role. Be careful not to treat an adult patient like a child. When the patient says I’m not hungry and refuses to eat, this information goes back to the nurse or doctor. Usually sipping water or juice is fine. By pushing a patient to eat is to satisfy your own need to feel productive, useful or even in control. Be careful to not cross that line. You are there for the patient’s comfort and safety and not to be in control of the patient.

In patient safety, there is a spoken and unspoken “rule” that we are not supposed to blame the people who make errors. There is a system, in most cases that causes these errors to occur. This is known as the Swiss cheese model. This term is used regularly to explain how errors happen.

Because there is usually a system break down, where the error is not caught, if it makes it through the holes in the Swiss cheese, it is not just one persons fault. Therefore, we couldn’t possibly punish (suspend or fire) an employee who causes harm to a patient.

On my way back from the airport, following a 1 ½ day patient safety meeting, I was surprised to hear on the radio that the Secret Service agents who allowed a couple to crash President Obama's first state dinner were suspended.

In the newspaper today I read that Secret Service Director Mark Sullivan said it was “human error," which allowed these unknowns to intrude. For this, three men were suspended.

Although I am not advocating firing or suspending someone who makes an error, I’m just wondering why I am seeing this as a bit controversial. Care to comment? Please do.

HRET Patient Safety Leadership Fellowship

I had the absolute honor of addressing the HRET American Hospital Association and National Patient Safety Foundation Patient Safety Leadership Fellowship last week. I myself have submitted an application to work along side the most committed group of people in this country when it comes to patient safety.

My presentation was almost 3 hours if you consider the 45 minutes my colleague Ken discussed compassionate communication. Being a small group, there was plenty of interactive discussion and sharing. They mostly shared their commitment to their patients and their patient’s safety, but when I returned home, I received heartfelt e-mails about their own experience with medical injury to themselves or their families. It really does support my claim that it isn’t “if” you or someone in your family has experienced harm, it is “when”.

I hope my presentation reached some of them to consider patient safety as a lifestyle, not just a job. I was pleased that NY City Health and Hospital Corporation played such a big role as participants in this program as they met in NY City as part of their year long commitment to the program.

Unfortunately, no one from any of the many Long Island hospitals participated in this years Patient Safety Leadership Fellowship. This may just be a reason I can worry using the hospitals in my own community.

Remembering the Medical Injury

Have you ever wondered why people who have experienced medical injury seem to remember for many years later the conversations with healthcare providers following the incident? A 60 Minutes program about the medication called Proprandol that can block painful memories for post traumatic stress also mentioned how post traumatic stress or PTS happens. Another article on the same subject has just surfaced.

Adrenaline is released when an incident happens that makes you angry and emotional and this adrenaline actually makes you remember better.

Those who experience medical injury remember the details of the incident itself. However, it is often the conversations that follow the incident, with the medical personnel in which answers are not honest and forthright, that the patient and their family remember and focus on. I call this “he said she said”. Although it is better to focus on facts so others can learn from the incident, it is the conversations that follow that get the most focus.

Example: a patient may have had a delayed diagnosis because no one called about her test results. This alone is very traumatic and has a lesson - we should always call to get our own test results if we do not hear from the doctor’s office. But, the conversation may continue, “I asked the doctor why they didn’t call and he said he would look into it.” This may seem a reasonable answer, but this answer may be what has actually traumatized the patient long after she received her treatment, even with good results, because this conversation is what caused the adrenalin to be released. Additional conversations are also remembered in detail and are as painful.

Although there is no proof, it does seem like something worth knowing. Studies have shown repeatedly that honest disclosure and upfront compensation or an apology reduces the chance of a lawsuit. It may be another reason that patients experiencing medical injury should be treated fairly and with honesty from the beginning. Maybe treated with respect and honesty will keep that adrenilin from flowing.