This blog represents my experiences and my opinion only - often at the bedside. All posts are short enough for easy reading - therefore I couldn't possibly share all there is to share.
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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
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.
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
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!
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
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
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
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………….
Opportunities for improvement can come when we address them. Please address them!
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.
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.
errors are the third leading cause of death in the United States
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 www.oneisanumber.org.
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.
you for your prompt attention to this matter.
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
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.
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
all your doctors,
if you are allergic to
if you finished high school,
if you are right handed,
do you shave every day,
are you kosher,
how many children,
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
Please check us our here at www.patientsafetyevent.org 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
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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:
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.”
“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.
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.”
“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.
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
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.
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.
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?
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.