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.

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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.