Medical Care and the LGBT Community - L.G.B...............T.

Medical Care and the LGBT Community

Hospitals and medical staff are beginning to understand the importance of certain special concerns in treating the LGBT community. This group has special needs and sensitivity issues that may need to be addressed.

In fact, I believe that it is a serious mistake to group together the lesbian, gay and bisexual community with the transgender community – specifically transsexual. No, I am not transgender and I don’t even have family who are (not that I am aware of) but I study this topic, talk to people who are, and have been at the bedside as a patient safety advocate for people who are transgender.

The medical needs of the transgender community, in my non-medical opinion, are very different from those of the LGB community. Who you love — as in being L, G or B — is different from who you are. Just as important, is how transgender people see themselves. A lesbian may be very accepting of her body and may not cringe at the thought of exposing it. 

A transgender person, on the other hand, may have been ashamed their entire life of their body parts. Taking testosterone or hormones may have changed a transgender person’s body dramatically but without surgery; this can be surprising and confusing to healthcare workers who have not been taught about transsexuals and the stages in their transitions.

A woman who needs a prostate exam, or a pregnant man, should not be cause for alarm or even curiosity. This is not part of the lesbian and gay society. Many transgender people started off as gay or lesbian and some have become gay or lesbian. But that’s not always the case: as one friend explained to me, he is just a straight man now – almost.

Ilene Corina is the President of PULSE of NY, a community based patient safety organization and a patient safety consultant. She received a scholarship with the NPSF / AHA Patient Safety Leadership training where she studies patient safety in diverse populations on Long Island. One group she has worked with is the transgender community.

Join me and bring a friend!

Disruptive Behavior

Disruptive Behavior Can Change Outcomes

 

“Disruptive behavior” in healthcare is a fairly new term to explain medical professionals who may otherwise be called rude, arrogant and not easy to get along with. An article in USAToday describes disruptive doctors as a patient safety risk.  For many reasons they are a patient safety risk including that others won’t stand up to someone who is intimidating and probably bringing in money for the hospital or practice.

Arrogance, bullying and disruptive behavior is not only in the operating room.  It can be seen in meetings and in the board room. 

A few years ago, I was at a meeting with a number of high level medical professionals.  All who seemed to get a long and respect one another.  When one physician told a story of her caring for a patient and how the outcome affected her and can be important for others to learn from, another well respected physician, who didn’t agree that that experience should be counted as a “measurement” began to raise his voice and become argumentative and explain that she was wrong.  This physician was louder and much more aggressive to get his point across.  His comfort with his own behavior made me realize that this is not new.  I intervened and shared my displeasure.  When it was all over, the physician chairing the committee announced to the group of about 30 people, including the newcomers that it is wonderful that we can all share our thoughts and ideas in a conversation and still get along and be respectful.

I followed up in a letter to the leadership of this group, some who are deeply involved in “disruptive behavior” that this behavior was not respectful nor a conversation.  The physician who was telling her story was “attacked” (she admitted that to me).  Her colleague was rude, aggressive and being “disruptive”.  My letter was taken seriously and acted upon.

It is important that we, as patients are not afraid to speak up.  We MUST acknowledge that there are improvements being worked on in patient safety and improving the patient experience but it may never leave the c-suite.  If the information doesn’t get to the bedside, it is up to us, the patients and advocates working in patient safety to make sure patients and families feel supported when speaking up. 

If you feel disrespected by a sales person, auto mechanic or customer service representative, you have a choice to not return and give them your business.  The same holds true for medical professionals.  We can't live in a world thinking that we must tolerate behavior that makes us uncomfortable.  If they treat us, the patient that way, its probably affecting their work and their relationship with their team.

 

Rating Doctors

North Shore-LIJ Health System Raises the Bar Once Again

North Shore-LIJ Health System is now posting ratings from patients on-line to help choose a physician. 

Now patients who use doctors affiliated with North Shore LIJ Health System can expect that their concerns - and compliments will be used as a tool to hold physicians accountable for patient relations.   How many times have you felt that your physician didn’t spend enough time with you to explain a new medication, a procedure or a diagnosis? This dialogue and communication between patient and physician is crucial to help in getting the best care possible and better outcomes.

The site is simple enough to use.  Go to the system website, type in doctor search and you can start narrowing down your search.  In one instance I went from 374 choices and by choosing my insurance narrowed it down further to 236 and then by hospital – if you have a favorite hospital, narrowed it down to 79 physicians practicing in the field I searched.

Although in the time I spent searching, I couldn’t find any negative comments.  That leaves me to wonder where they are.  Are people just leaving a practice and moving on without filling out the survey?  This is a great opportunity for patients to help patients by getting the information out and for holding the physician responsible for their “patient relations”.

I would like to see it go one step further and let us know how the office staff treated us.  So often we have more interaction with the staff managing the practice.  That should be encouraged in comments.  Although this is not a guarantee for positive outcomes – there is never a guarantee, it is yet another tool for patients to be part of the team in making choices.   

Here is something else family and friends can do to help a loved one recently diagnosed or searching for a doctor.  Do the search. 

Watch a video explaining Rating Doctors

Peggy Lillis Foundation

Preventing C-Diff in Loving Memory

I had a very educational and eye opening experience being in the room with passionate advocates at the recent PeggyLillis Foundation symposium and training on C-Diff awareness and prevention.

This amazing group of people were there for one reason – learn about - and prevent the spread of c-diff.

These are the people who are hands on, loved ones and survivors of this awful, preventable infection.  According to the Centers for Disease Control Clostridium difficile was estimated to cause almost half a million infections in the United States in 2011, and 29,000 died within 30 days of the initial diagnosis.

There were an estimated 722,000 hospital acquiredinfections (HAI) in U.S acute care hospitals in 2011. About 75,000 hospital patients with HAIs died during their hospitalizations. More than half of all HAIs occurred outside of the intensive care unit.

According to the Mayo Clinic, C. difficile spreads mainly on hands from person to person, but also on cart handles, bedrails, bedside tables, toilets, sinks, stethoscopes, thermometers — even telephones and remote controls.  Illness from C. difficile most commonly affects older adults in hospitals or in long-term care facilities and typically occurs after use of antibiotic medications. However, studies show increasing rates of C. difficile infection among people traditionally not considered high risk, such as younger and healthy individuals without a history of antibiotic use or exposure to health care facilities.

Christian Lillis and Ilene Corina

At some point you may want to throw your hands up and give up telling healthcare professionals to wash.  What kind of disservice would we be doing for the public, for those people who shared their story at this conference, for the next generation of our children? 

Can we even for a second say that Peggy Lillis’ death didn’t matter?  It did, her beloved sons have made it their mission to educate and advocate and make their mothers life matter.   She must have been amazing to raise her children to do such great work. We owe it to her and to the people we love.  Next time you are with someone at the hospital in the emergency room or at the bedside you can say– “DO YOU KNOW PEGGY LILLIS WHO DIED FROM C-DIFF?  I DO!  NOW DON’T TOUCH MY LOVED ONE UNTIL I SEE YOU WASH!” 

Read Peggy's story here  http://peggyfoundation.org/story/peggy-lillis/ 

A New Flag

The Patient Safety Flag

When so many of my Facebook friends’ pages turned rainbow in support of same sex marriage, I marveled at the connectedness amongst so many people – gay or straight.  That rainbow meant empowerment, loyalty and “we are here, we are one”. 

When men, women and children wear pink it shows the sisterhood of those suffering as a patient or loved one of a patient, or those who died from breast cancer.  Red ribbons share the common goal of finding a cure for AIDS.

What connects those who have suffered preventable medical harm?  Those who have lost people they love – those who fight to keep healthcare safe often feel alone because when we talk about patient safety or patient empowerment it may come across as blame to the people who work in the system.  But patient safety is not about blame.  It’s about encouraging our most vulnerable people; those who are sick, frail or injured – patients as well as their scared and frustrated family and friends to feel empowered and be part of the solution.  It is about giving the people who work within the system the tools to do their job and keep patients safe and the center of the team.

With the staggering numbers of 400,000 lives lost each year from preventable medical harm, there needs to be a connection.  Purple, a powerful wavelength of the rainbow is said to be a fairly new color.  In the book The Color Purple, Shug tells Celie “I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it”.  A sign of mourning, the color purple can make us take pause.

Yellow, the color of the sun and sign of a new beginning can give people hope.  A yellow dot, not quite hidden within the grief can keep us focused that there is a future in the work we do.

Too Many Stories

Stories from the Field

In less than 24 hours I heard 3 different stories.  One from a patient who used their local emergency room and told me about how rudely they were treated.  The nurse spoke down to the patient (giving me numerous examples) and then when an error was found on the patient’s record, the staff seemed annoyed instead of apologetic at their own error.

Another conversation was about a grandchild who died days after being born because the problems associated with this birth were not escalated the way they should have been.

One conversation was from a spouse in the hospital watching clinicians who didn’t wash their hands.  The patient’s “advocate” who shared the experience with me gave up in asking and just wanted their family member to get better and get out – defeated in trying to protect a loved one.

Patient centerdness is not a television
 show - it is real life



Why are these stories so frustrating and even more upsetting than usual?  These were from 3 different physicians heavily involved in the patient safety movement for much of their adult life.  Recent stories of inappropriate care are still happening and called a “system problem" so blame can be avoided.  Is the “culture” patient safety experts talk about?

Behavior that is anything less than safe, kind and sympathetic to a patient can easily lead to avoiding an intervention that can cause injury or death. Speak up has become just words in many institutions.  “Sure, speak up - but not to me” is probably what many people working in the system think.  Not wanting to ask a question about test results, medication or a treatment plan because a patient may bother their clinician, or the nurse is too busy, leads many patients taking their care into their own hands.  Called “noncompliant” by medical professionals.  Maybe they need to look at themselves to learn about noncompliance.

I was contacted by a California man whose mother is in a New York nursing home.  They “found her” he said in pain with a dislocated shoulder.  Then a broken hip.  His mom who has cared for him his whole life now suffering from dementia is alone, injured and in pain.  It took them days to contact him.  He has no idea how these injuries happened but the staff isn’t answering his questions.    

I  have had to let families know when staff are doing their best.  The patient may be being a bit unreasonable or there is a major tragedy on the floor that the staff are tending to - keeping other patients waiting.  But when patients are vulnerable – sick, frail or injured, they often remember how they are made to feel, even more than what is said.

How do these things happen?  How are we living in a society that the patient is still not in charge or made to feel respected?  Families and loved one’s must find their voices and expect no less than, at the very least, having respect in a system that is meant to save lives but designed for failure would be a start.  If this is the “culture” of our healthcare system than that means it comes from the leadership and the boardroom.  Errors don’t happen in the boardroom – they happen at the bedside.  This is where the training of family needs to be done.

Where does a patient or family go when someone isn’t “nice”?  How does being nice, respectful or kind to a patient change the outcome? 

It’s been 25 years since my son died because no one listened.  I was intimidated and scared but not angry enough to demand service.  His body filled with infection and bleeding to death from a tonsillectomy it’s too late to change that outcome.  Those stories at the beginning are from medical professionals who, when sitting on a gurney are no different than the scared mother I was 25 years ago. How far have we really come? 

Choosing an Assisted Living Facility

How Does One Choose an Assisted Living Facility?

Over the years I have been asked numerous times and again this week, now that I, or someone I care about is leaving rehab or the hospital, and need / want to go to assisted living, how do we choose the "best" place. 

After speaking at SUN (Senior Umbrella Network) meetings and networking with numerous people who own, work for or know of assisted living facilities, I have learned that there are some wonderful facilities run by caring and wonderful people.   But that doesn't always make it easy to choose.  I want to put together a short list of why someone should consider one assisted living facility over another.

Please consider sharing here where someone should start looking on Long Island and why.

Only positive comments requested.

Thanks!

Patient Centered Care

 Patient Centered - or Not

Patient-centered care supports active involvement of patients and their families in decision-making about individual options for treatment.

We all believe in patient-centered care, or do we?  Maybe there is another side to this we, patient safety advocates, patient safety healthcare professionals and anyone who says that they support patient centeredness hasn’t heard.

A dear friend and physician has been a long- time supporter of patient’s involvement in their care.  This doctor is well known for spending more time with patients than the average office visit.  Patients have this doctor’s cell phone number and there are handouts in this office with information about Ask Me 3, Patient Safety Tips and other patient safety literature. But, in a recent conversation, this physician tells the story of a patient who decided to not receive a procedure that the physician agreed could wait.  After all, if the patient doesn’t want to have a test or procedure, that can probably wait, isn’t that patient centeredness?


What happens when that test might have been a life-saving?  Should a physician be expected to spend extra time trying to convince a patient to have a procedure or take a test that  is important but can wait because that's what the patient wanted?  There must be a yearning for some medical professionals to go back to the days when a doctor says what a patient should do and the patient does it.

Choosing Your Medical Team

Patient Safety is Not About Bad Medicine

When friends or family choose a clinician or hospital, I find that they often try to convince me how wonderful their choice is.  They will tell me that the doctor is great or the hospital is the best. That usually means that for whatever the reason, the patient and the patient’s family are happy with their choice.  Whether it’s bedside manner, a gentle personality or a clinician who has a large practice of patients who work in healthcare, the choice is personal and meets the needs of the patient.  Choosing a medical team is a personal choice and I don’t need to be convinced as to why someone chooses their team.  I too choose my team for what may be important to me, not others.

SILOS

Patient safety is not always about good or bad medical care.  Even in a hospital where everyone is treated like a special guest and patient centered care is apparent “things” can go wrong.  A nurse who is rushed or distracted may forget to wash her hands, pick up the wrong medication or forget to check the patient’s identification.  Mix ups, miscommunication or human error can happen in the best facilities and by the most experienced medical professionals.  The reasons how errors or unplanned outcomes may happen is not about incompetence.  Maybe in the “better” hospitals errors may happen less.  Maybe when choosing a physician who comes well recommended the outcomes may be better but a medical team is made up by many more people than one clinician.  It is made up of teams, working within systems where many things can go wrong.  My role is to educate the public and break down those silos (a term used to describe a business that lacks team work) to keep the patient and family aware how something might go wrong and be part of the medical team – that prevents anything from going wrong. 

Our team will be doing that again this May 19 and 21 from 5:30 PM to 9:30 PM . Register early – classes fill fast  Family Centered Patient Advocacy Training