Mikey's Birthday

Today is My Son's Birthday

Today would be my son’s birthday.  If he were alive, I’m guessing we would celebrate in some way.  Truthfully, I don’t miss him anymore and I’m not ashamed to admit that.  I’m happy with my life.  I have two perfect sons.  Michael’s life, and death has given me a bigger cause, so I think of him every day.

How many people do we know who have said that the doctor made a mistake, a loved one died from a preventable medical error, they have suffered their life with the aftereffects of a hospital acquired infection?

Yet still, there is no education for the general public about safe patient care.  Books continue to come out on safe patient care from medical professionals or injured people which is where we are expected to be educated.  Is the public reading academic research on safe patient care?  The public needs to be more responsible but we won’t take that seriously until one day you too are saying, it happened to me.  Truth is, I don’t belong to a cancer group or march to stop gun violence.  It hasn’t affected me or my family.  Medical error did.  Michael died following his surgery because of the doctor’s mistake.

Imagine a campaign for all people to be more responsible for their own safety.  As we buckle up on an airplane, we know to stop at a red light, we learn early to stop, drop, and roll if we catch on fire.  Why not have 5 Steps to Safer Health Care for your family to follow, for your employees to do, for your faith community to help each other?

We do!   www.TakeCHARGE.care  In memory and in honor of all those who wish they knew that they too could have done more, saved a loved one or spoke up.

Let's talk

Another Patient Safety Conference

A Patient Safety Conference; About Patients But Not For Patients

I sat on zoom for hours today to attend a patient safety conference. A PATIENT safety conference.  The first one I went to was in 1999 when I heard healthcare professionals share their stories of their own lost loved ones.  Some, over the years, have even shared with me in secret what they have gone through.  The pain, the anger, the struggle, and grief of losing a loved one because of the system they worked for.  I don’t even know how many I have gone to since then.

Today I heard about human factors and how we all make mistakes.  A nurse makes a mistake and the patient dies.  Should she be fired? What should the punishment be when a doctor injures a patient because of the wrong diagnosis? The popular Swiss Cheese Model that anyone can plug up a hole and keep the mistake from reaching the patient.  Yes, there was talk about family involvement, but extraordinarily little, and only after the patient arrives at the hospital.  Who is teaching the patient or family about plugging up that hole?

We will keep blaming hospital staff when they get it wrong because no one is even suggesting that the PATIENT needs to take some responsibility for their own safety.  Sharing their allergies – accurately - prepare your symptoms - accurately – full medical history – accurately – list of medications – accurately and yes, even demand that the room is cleaned, and hands are washed to avoid infection.    This is not rocket science. 

One speaker brought up the airline comparison that when there was a bird strike, as annoying as it was to be delayed, they played it safe and changed planes.  The pilot, he said showed concern for the passenger’s safety first.  Well – go figure, maybe it was the pilot’s own safety that concerned him….

Two more days.  Maybe something good will come out of all this.

Are You to Blame When Errors Happen?

Who's to Blame?

I will be the first to suggest that when an error in care occurs, the patient or their family should start at the place that made the error, and suggest that they fix it. But if they don’t share the incident any further, could that error be just hidden away, only to happen again with someone else?

Following injury or death from a medical treatment, many people will say they want to make sure the same thing doesn’t happen to another family. For years, I would suggest that the patient or family write a letter and also suggest what can be done to fix the “system” that caused the unplanned outcome. But what if there are rules and policies and training in place, yet problems still arise? 

Here is what happened. Not a physical injury, but enough to make me lose faith that a “system” can work without filing formal complaints.

The short version: at a psychiatrist’s clinical practice, the patient and I dropped off the patient’s full list of medications, the HIPAA form and a letter stating that I would be assisting the patient throughout their medical care. Two days later, the information still had not found its way to the psychiatrist, who had an outdated list of medications for this patient. When I suggested that the list he was reading from was wrong, the psychiatrist said, “Well, I don’t know if it’s accurate. There is a list, I don’t know who loaded it in, so I’m not going to confirm it that it’s accurate.” Days later the information we had handed in showed up. This doctor wasn’t curious about where it had gone in the meantime, nor was it a major concern to me because the info was now correct.

 

Now, several months later, it has become a concern, because the same patient received a packet of personal mental health records and notes, medications and diagnosis, and along with this patient’s information was another patient’s information, with name, medications, psychiatric notes and diagnosis.

Just one patient, and two incidents only months apart. Is this a coincidence? Or is it the result of a careless system that has seriously violated a patient’s privacy? Am I guilty because I ignored the first incident? (Where did the envelope we dropped of actually go?)

Should we assume this is not the first time a breach like this happened? If I just throw out the other patient’s private health information (there is no phone number to let the other patient know of the breach) this patient may never know. If we tell the clinic what happened, can we assume that “it will never happen again”?

So, who is to blame? Careless staff? A system that lacks training and policy? Should we blame no-one because of the system that failed these two patients? Should we assume that this breach will be taken seriously?

I would love your thoughts and welcome your opinion. Yes, I will be filing a formal complaint because if it happens again, I’m to blame.

So, You Think You are Helpful

YOU MAY NOT BE AS GOOD AS HIS AS YOU THINK YOU ARE

Now that there is a COVID-related policy in many hospitals and nursing homes that families can’t be with their loved ones, I’m going to touch on a topic that may make many people angry – but I expect that, deep down inside, many of you will agree.  Maybe, just maybe, you aren’t the best person to support a loved one in the hospital.

It is often assumed by family members that they need to be there to support their sick loved one who is hospitalized. That’s not always the case. I have been with people who are hospitalized and have been asked to keep a husband or wife away. They may be bossy, loud and feel it is their job to demand everything their family member wants or needs without thinking of the nurse’s position or the other patients.

You may just imagine hearing a father raising his voice to a nurse: “I said, my daughter needs her pain medication!”  There is no reason to think a nurse doesn’t want to get a patient pain medication. Yelling at a nurse usually doesn’t help.

A chatty family member or friend who thinks a patient wants to be entertained instead of sleeping can often not only aggravate the patient, but also roommates who need to rest. If you are visiting the patient, have you discussed how you might be helpful?  When the patient says “I want to ask the doctor or nurses about………….” grab a notebook and start writing these questions, thoughts and ideas so when the doctor comes in, you have the questions, and any new symptoms, ready. Will a visiting family member be polite and check medications,
answer questions to the nurse if you’re resting? Will they repeat back instructions, get information in writing, and work on the discharge early in the care plan? Will they ask who each person entering the room is, and why they are there? Will they make sure staff check a patient’s ID and have the correct patient?  Will they wipe down doorknobs and the TV remote and bed rail after someone touches them? You may be reading in other blog posts or articles that the patient should be doing this, but that’s not always the case and they may feel that being their own advocate can be confrontational. It can be, and that goes for the family too. Practicing to be a caregiver, support person or advocate is important to be good at what you do.  There is more to this than just being there.

I have spent thousands of hours with patients and their family members in the hospital which is why I believe that training that the Pulse Center for Patient Safety Education & Advocacy provides is crucial to anyone who will be a “guest” of a patient.  When you hear someone say that they got what their loved one needed because they are a great advocate and yelled at everyone until they were heard, think again.

 

She Had No Intention to Listen

 STOP YELLING AT ME

A woman on the phone asked if the class that was being offered would help her handle the terrible treatment her husband received at the hospital recently.  I wasn’t sure how to respond so I asked her what she is looking for the class to address.  The Family Centered Patient Advocacy classes we are offering at Pulse Centerfor Patient Safety on three Thursday evenings in March include hospital policies and procedures, communication skills, understanding and avoiding bias (conscious or unconscious) and other information to help a family member or friend become an advocate for a patient and even help someone decide if being an independent patient advocate is for them as a possible career.

It seems her husband, who was very ill, also had disabilities that made it difficult for him to care for himself.  She did not want to leave him at the hospital without her but she was not permitted to stay at the hospital with him because of COVID-19.   Her voice was raised, she was obviously angry, she used words that were not helpful in our conversation and every once in a while, she would take a breath and ask, “so will these classes help?”  Not waiting for an answer, she would continue in a rage about how terrible this hospital staff treated her.

I was able to get out the question “have you thought about talking to someone at the hospital?”  That started a whole new blast of anger. 

I could start practicing my empathy and my active listening skills but truthfully, I didnt see this conversation continuing.  So, I just listened and when she asked for the fourth or fifth time “so will these classes help”?  I just responded “no, I don’t think so, best of luck” and that was the end of our conversation.

If you want to join us, we would love to have you, but we won’t be solving past problems and communication plays a big role in Family Centered Patient Advocacy.  Communication such as active listening, empathy is a skill that people must want to learn and practice.  Some people want to play an instrument but don’t do it well and may never make beautiful music. They may think they are a musician but others cringe when they hear the sound.  Some people may want to advocate and communicate, but they may never make it without practice.  If you want to learn and practice, I’m happy to help – after the program, we can practice together.  Give me a call and register here:

FCPA Class - Pulse Center for Patient Safety Education & Advocacy

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.