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.

About World AIDS Day
Get more tools here

Saturday, November 9, 2019

New Amsterdam TV Drama

NEW AMSTERDAM Television Drama

For the first time I watched New Amsterdam and was shocked at the content.

The title of this episode ‘Good Soldiers” was not the part that I watched that made me a fast fan.  It was the interwoven story line of a woman who had a “botched” surgery a number of years ago by a surgeon who was “protected” by his peers.  The surgeon continued working moving from hospital to hospital leaving a trail of medical injuries.   In this case, the woman has spent years in a wheelchair while the surgeon continued doing surgery often injuring other patients.  When Dr. Max GoodwIn, the Medical Director played by Ryan Eggold found out about this surgical screw up that happened years earlier, he started asking questions and found that there were cover ups.  Approaching the Dean of the medical school, Dr. 
Goodwin learned that the dean knew how bad things were but continued the cover up with his peers to “protect their own”.

Dr. Goodwin suggested the patient may start a lawsuit and thought it would be a good opportunity to change policy to become transparent and be honest with the patients.  Instead, a check was written to satisfy the woman.

There are many real-life aspects top this.

The cover ups:  It must be hard for a new person in the medical field to expect to be a whistleblower early in their career.  Who could they possibly trust to report what could -and maybe should be seen as a crime?  Injure or kill someone and cover it up is giving people in healthcare a license to kill.  I have heard this is not uncommon.  I too would have to wonder how do you go to someone with what may be half the facts and report something so horrible about someone who probably brings in millions of dollars a year to the hospital?

The check:  Should the hospital have written a check and stopped this whole story from getting out?  Should the woman have accepted a check to be quiet?  In a lawsuit people often sign what we call “gag orders” discouraging the injured party to not speak of the incident or the amount of the settlement.  When they sign, some people feel that they shouldn’t and are allowing the behavior to continue.  This may be true but why shouldn’t a person who wants to move on take the money and do that?  Some people want to fight it and will get less money.  It is a personal preference.  Unfortunately we rarely hear the whole story or all sides. Injury = money it’s not that simple.

So what happens when the woman takes the money and the doors get closed?  Is there retraining for staff?  Are all patients who used the doctor leaving a trail behind him of dead and injured called out on his/ her behavior?  What does a patient or family do to be sure “This doesn’t happen again” like so many people say they want?

Why doesn’t the media cover every story so others can feel safe?  When there is a train crash or a plane crash it makes the news, an investigation, every detail shared.  When medical errors kill people or injure the unsuspecting……………………….

Saturday, October 19, 2019

No One is Saying Blame

It's Not About Blame

I went with some friends and colleagues  from Pulse Centerfor Patient Safety Education & Advocacy yesterday to meet with a businessman to talk about our brilliant ideas to improve patient safety.  After all, this is a public safety issue.  Patient safety and medical errors is not only focusing inside the hospitals, nursing homes and doctor’s office.  Patient safety starts long before a person becomes a patient.  We are people.  No matter our color, age, gender, bank account, career choice, path we have taken in life or education – we are all people.

It was interesting when this businessman realized we were not there to complain about the system.  He was ready for an argument – blame.  “No” we told him, “blame, accountability, anger and punishment all come after the fact.”  We are not there to blame or hold anyone accountable.  This is not what we do.  Our goal is to keep people from getting injured or worse.  Accountability, apology, disclosure all mean someone has been hurt and we have not done our job.  As a community based organization, we can’t expect to improve if we continue leaving it up to one side of the aisle to fix this 20 year discussion of medical errors. 
The public must be better involved.  At Pulse CPSEA we can help make that happen!  

Saturday, August 17, 2019


From Boardroom to Bedside

We often hear from the owner or the person running a business how their staff behave.  We don’t allow that behavior here” someone may say to an irate customer.

It’s not unusual for that statement to be shared to patients or their families who are not pleased with the care they are receiving.  Years ago, when I worked with people who were living with various physical disabilities as a patient advocate, someone in leadership at a hospital said to me, as well as the group he was presenting to, that nurses and nursing assistants take extra care of people who have disabilities.  They take extra time and address any special needs they might have at his hospital.

“So”, I asked him, “do you have extra staff to help these nurses or are they just told to work harder?”  His look was the answer I expected.

I was there because of the problems people with disabilities were having in their medical treatment and he was supposed to have the answers.

Another time, a hospital director explained that “we rarely, if ever see people who are transgender so we don’t need to address that here”. (See March 2015)   After my presentation which was touching on bias and disparities, I was asked by an employee “how do we address people who are transgender?”  When I asked why that was important to him, I learned he was in charge of the transport team and they see many people who they believe are transgender mostly in the emergency room.  Something leadership was not aware of.

I have heard what a hospital's policy is for handwashing and then watch how many staff do not wash.  By reporting this, at times, I have received thoughtful responses from the leadership, or the doctor themselves who I challenged.   This is how, I believe we, as patients can make change.

Hospital leadership (and I am careful to use the term leadership because a hospital or healthcare facility is usually made of brick.  The leadership is made up of humans and decision makers with their own feelings and needs) the human beings who are in charge of the healthcare system, often do not know what is happening at the bedside.  Many times, I have asked them to “take off your tie and go sit with a patient to see for yourself the comments and care your staff – good or bad – use in treating patients.”

I know when I worked at my last customer service job customers would speak to me about how lousy service was at times. The management didn’t know because we were addressing the unhappy customers for them with apologies - so improvements couldn’t be made because they didn’t know where the problems were.

Then I get a look at this video that has come out and wonder how long this PA has worked in this hospital.  How many complaints were mishandled and how many people have been injured or hurt?  Should they go back to any patient he has ever treated as they would if it was a disease that could be spread through dirty needles of unclean equipment?  Maybe all his patients who he ever treated should get a letter that reads “Dear patient, we found a parasite in our hospital and want to prevent this from spreading further”.

I only ask that though the majority of healthcare workers are kind, considerate and qualified, the expression “no one wakes up in the morning wanting to harm their patients” is never used again. There are good and bad people in every job, every color, every religion, every gender………….

In all fairness, the comments by the hospital are on their Facebook Page

Friday, August 16, 2019

Letter to Another Doctor

Letter Sent to Another Doctor's Office
Opportunities for improvement can come when we address them.  Please address them!

Dear Management,

On August 8, 2019 I was contacted by a person who used your services because of a swollen pinky.  An x-ray was taken and the patient was told that the next finger over (the ring finger) was fractured and an infection had developed.  This patient was prescribed antibiotics and it was suggested they see an orthopedist specializing in hands because of the fracture, which they did.

As it turns out, the patient did not have a fractured finger (the x-ray was read incorrectly). The patient had gout, which needed medication, not an antibiotic.

Pulse CPSEA is a patient safety organization dedicated to raising awareness about patient safety through advocacy, education, and support.
The following information may be helpful to share among your staff.

  • Medical errors are the third leading cause of death in the United States  
  • 80,000 to 160,000 people are harmed due to misdiagnosis each year with 40,000 to   80,000 deaths each year caused by misdiagnosis 
Additional patient safety statistics, with references can be found at    This letter and information are being sent to you in the hope that they may be used to improve knowledge and understanding as well as quality of care and patient safety in your office. I trust you will take my comments in the positive spirit with which they are offered. No official report will be filed at this time but I would appreciate a response indicating how this information was shared, and the steps taken to correct the concerns raised, so I can inform the person who contacted our office that it is, in fact, being addressed.

Thank you for your prompt attention to this matter.

Sunday, August 4, 2019

Consent: What does it mean??

The Meaning of Consent

I was recently at the hospital with a patient who was getting a complex surgery.  The patient didn't seem to understand what was going to happen during or after surgery. Just before the surgery we saw the surgeon who was going to explain the procedure. The surgeon had the consent form on a clipboard ready for signing.

I offered to read the consent with or for the patient after the doctor explained the procedure.  The doctor did the explanation, handed the patient the forms and the patient signed without reading.

The AMA says:
The process of informed consent occurs when communication between a patient and physician results in the patient’s authorization or agreement to undergo a specific medical intervention.

To enable patients to participate meaningfully in decisions about health care, physicians have a responsibility to provide information and help patients understand their medical condition and options for treatment.

No where does it say that the patient who signs, actually understands the procedure or surgery only that they are authorizing the procedure /surgery.

So, does the consent mean that the patient understands the procedure and risks?  Maybe it means that to the clinician, To the patient it may mean only that they are giving permission.

Friday, April 26, 2019

Family Centered Patient Advocacy and Patient Safety Training

Family Centered Patient Advocacy Training

You probably have heard the saying “bring someone with you to the doctor or hospital” but what does that person do? 
  • Should they be asking questions for you?   
  • Should they tell everyone to wash their hands? 
  • Maybe they should be available to hold your coat?

    Do they need to know your: 
  • medical history, 
  • your medications, 
  • all your doctors, 
  • surgeries, 
  • insurance, 
  • home address, 
  • drug use, 
  • smoking habits, 
  • drinking habits, 
  • if you are allergic to anything, 
  • if you finished high school, 
  • your religion, 
  • if you are right handed, 
  • do you shave every day, 
  • are you kosher, 
  • how many children, 
  • grandchildren or 
  • if you are sexually active?

If this seems to make no sense, it’s because it probably doesn’t. No one is teaching these skills – now you can learn to be a patient – a patient’s advocate, a support person or a good neighbor and friend when someone needs your help going to the doctor or hospital.

In just eight hours I promise this will change your life!

Please check us our here at and sign up for our next course.  Thanks to the space donated by the LI Community Foundation we can discount our price.  Let me know you are interested and register before May 1st and we can work out a price that fits your budget.

Watch this short video to learn about how we have helped people and now you can too.  After eight hours we will support you through all your advocacy for friends, family or become a professional!

Tell your friends and family.  Don’t come alone!  Special price for 516/631 Ads Members and Friends just $25.

Wednesday, March 6, 2019

The Selma Blair Story

The Selma Blair Story is So Much More 

Patient Safety Awareness Week March 10th-16th 2019

I recently saw the interview with Selma Blair talking about her diagnosis of multiple sclerosis.  The interview is meant to be uplifting and a great way to help people understand this awful disease.

If I were to interview her, I may ask different questions.  I may ask “so tell me what it was like to be told you were just an exhausted mom?” Or, “tell us what it was like to struggle with fatigue for seven years and not be taken seriously by your doctors?”  How about “Is there a lesson here that patients need to believe in their symptoms and look for other doctors who take them seriously?” 

I wonder what the lesson here is for the doctor.  Were the doctors retrained or taught about the bias they may hold unconsciously because of who she is, what she looked like or that she is a woman?  Is all this important information slipping away so that society can forget about what this is really about, a misdiagnosis for seven years.

This is not the first time this has happened in recent years. Remember Fran Drescher openly spoke about her two-year journey to be diagnosed with uterine cancer.  She went on to talk about her fight for cancer research not addressing publicly that maybe there was more we could do to get a proper diagnosis.  It was only after her eighth doctor did a biopsy—something that her first doctor said she was too young for—that Drescher was diagnosed”.  If we aren’t addressing the emotional pain, how about the financial burden to society by the wrong diagnosis such as the cost of seeing eight doctors.

There are studies about women’s medical care and the problems associated with getting diagnosed or being listened to (it’s even worse for women of color) but these happen one at a time and the articles and stories disappear. 

There is an answer.  If the people who work in the field of healthcare haven’t gotten it right yet, maybe we should be involving the public – the patient - even more.

There needs to be funding available to continue the discussion when something like a misdiagnosis happens so people can learn about being a patient and start taking some of the responsibility for their own safety in healthcare – not just their health.

If people were more involved in their healthcare, they would take their health more seriously and not assume some doctor will fix it all up – because they don’t always get it right.

Here are just a few articles that may bypass the public:

See for more information and for more facts visit 

April 2018
MODERN MEDICAL RESEARCH has historically centered on men's health, by tradition and by statute. Only in the past 25 years – with the lifting of a law that barred most women from participating in clinical trials and another requiring their inclusion – have researchers begun to systematically consider how women's health outcomes differ from men's.

Everybody Was Telling Me There Was Nothing WrongMay 2018One 39-year-old woman quoted in the report recalled: “One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.” 

May 2018
“Well, you look like you’re doing great,” my primary care physician cheerfully informed me.
I stared at her from the examination table in disbelief. I had just told her that I wasn’t enjoying being with my children and was having trouble doing what needed to be done at work and at home. As a health journalist, I had interviewed dozens of physicians and psychologists. I knew that being unable to live one’s life was the big red flag signaling it was time to get help.
June 2018
When Katy Seppi first got her period, the pain was so debilitating that she frequently missed school.
“I also had really heavy periods,” she says. “In high school, my mom taught me to use two super tampons at once so I could go to school. My dad once had to take me to the hospital because I was having such bad pelvic pain on one side. But the ER doctor just said that I was probably ovulating and it was normal to have more pain with ovulation.”

How DoctorsTake Women's Pain Less Seriously

October 2015

“My wife,” I said. “I’ve never seen her like this. Something’s wrong, you have to see her.”
“She’ll have to wait her turn,” she said. Other nurses’ reactions ranged from dismissive to condescending. “You’re just feeling a little pain, honey,” one of them told Rachel, all but patting her head.  

Saturday, February 23, 2019

The Vanderbilt Nurse

The Medication Error on the News

The recent news about the Vanderbilt University Medical Center nurse is getting on-going attention.  While I try not to comment on specific cases, I want to comment on this because it is constantly in my news feed and is deserving of a comment.  Recognizing we don’t have all the details (and probably never will) this is what I want to say.

Many people sympathize with the nurse who allegedly broke rules and gave the patient the wrong medication which supposedly was the cause of death. Nurses rally around her for support.  They have raised thousands of dollars for her defense fund on GoFundMe. There is nothing good to come of this and there will be no happy ending so let’s look at another perspective.

Who is rallying around the family of the 75-year old woman who died?  Where is their support system?  Can they be told how this happened, treated with dignity to understand or are they being made to look the bad guys?  Are the malpractice attorneys’ part of this media blitz to get a faster settlement for the family and bring attention to this case? 

Has the nurse made numerous mistakes before, broken rules and injured or killed many people?  If so, shame on that hospital for keeping her on.  If she has never done this before, then shame on them for not showing sympathy to the family, offering full disclosure, a settlement and a description on how changes will be made for improvement and even retraining the nurse.

For goodness sake if you have ever looked at your cell phone when driving, you can injure or kill someone.  And because you are breaking the law you are held accountable and will be treated as a criminal.  Does anyone really think this nurse committed a crime?  Maybe she’s just not a very good nurse, was in a rush or just made a mistake of poor judgement – does that make her a criminal?

As long as we keep medication errors, medical injuries and patient safety a secret from the public, it will stay newsworthy when someone dies and causes this sort of media attention.

Could this have been avoided if the patient had an advocate and new what medication the patient was supposed to get?  If the patient’s advocate sat with the patient during her treatment could the problem have been found sooner?  We will probably never know.

As long as the healthcare system and medical professionals are the only one’s responsible for patient’s safety and working in silos with the patient and family looking in from the outside, you bet this problem will continue.  As a parent who lost a child from medical error and was chased down by attorney’s calling my home for days wanting to take the case but doors closing from the medical community, I will tell you to this day, years later, all I ever wanted was an apology and an explanation and to move on.

I’m wondering what this family really wants and how this all got to this point.

Sunday, February 10, 2019

Words to Help Communicate

Critical Communication and Words to Help

When I went to visit the woman at the hospital because she was not getting her medication, her questions were not being answered and she was barely able to speak and eat, she shared how angry she was at the lack of attention she was getting.    It is understandable being alone, scared and as someone always in control, having your independence taken away.  Anyone would be vulnerable in this situation.  She was calling people down the list of phone numbers of people who worked in the hospital she received and in her weakened voice from a painful condition affecting her voice. She told me she screamed “Help, help!!” into the phone.

By the time I got there and cleared up the problems she was having, I explained that yelling “help” into the phone, or in a hospital, may actually get people to turn the sound off in their head.  They may think of you’re as crazy, or annoying, I told her and like many of the buzzing sounds and alarms that scare or annoy us, they can tune sounds out – or, if someone needs them more, that’s where they will go and yelling help will only annoy other patients and staff.

Instead, what patients can do is let them know that you don’t feel that you are part of the care.  Patient centered care is a term that professionals use to keep the patient in the center of the care team.  Nurses shift changes should not be at their desk or in the hall. The patient should expect the shift change at the patient’s bedside so you can help answer questions or share concerns.  Don’t hesitate to let the staff know that the care does not feel “patient centered” if it, in fact doesn’t.    

Yelling help also doesn’t give specifics such as letting them know if you don’t feel “safe”.  Feeling unsafe because you’re not getting your medication, or the proper medication, your doctor has not come around while you are awake to speak to you about your diagnosis, treatment plan or answer your questions are real reasons to feel your safety may be at risk because you are not being included in the planning.

A clear explanation of your needs is important for the medical staff to know what you need and of course, if you can’t get out of bed having a friend or family member help you is important.  If the person visiting you can’t do this, think now who that person will be, before you need them. 

Now available seminars and programs Critical Communication  

Tuesday, January 8, 2019

Accountable or Responsible: Who is Monitoring the Medication?

Medication Safety and Management

I attended a presentation today by a hospital pharmacist.  Most of the people in the audience of about 50 professionals were representing nursing homes, home care agencies and people who work with older adults.  The presentation was very informative about understanding some of the complications and interactions that older adults experience with their medications.

The audience questions and comments focused primarily on who is responsible for monitoring the medication and reviewing medication.  The “responsibility” seemed to fall on the pharmacist or nurses in the nursing homes, rehabs, assisted living etc. Then the question about the home care agency in the patient’s home – who is checking on the medications?

The Food and DrugAdministration estimates that 1.3 million people are injured by medication errors annually in the U.S. 

With numbers this high, there needs to be some responsibility of the patient and their family in this discussion.  When I brought up that this presentation should be offered to the public, others seemed confused.  When things go wrong, the public has no clue of the complexities in medication management or other areas of medical care.  We only know that if something goes wrong, someone will be held accountable.  These silos have to stop and the public must be more involved in not just their health, but their healthcare and that means opportunities to hear a pharmacist present on medication safety and management.