Philadelphia Trans Health Conference

My Experience at the Philadelphia Trans Health Conference

I just returned from my first Philadelphia Trans Health Conference.  As I look at my keyboard, screen and keyboard again, I wonder where to  start .  How can I begin describe this amazing event that triggered so many different emotions? How I can possibly put it into words.

The Philadelphia Trans-Health Conference (PTHC) was founded in 2002 by a group of transgender activists, allies, and service providers.  It started with 150 participants and now has approximately 3,000 attendees and 210 workshops over three days.  Held at the Philadelphia Conference Center, there is no charge to attend the conference which is sponsored primarily by the Mazzoni Center.

I attended as a speaker  to hold the PULSE of NY,Family Centered Patient Advocacy Training. In the context of this training, I shared the work we do  to advocate for transgender patients during hospitalizations and medical care . I shared what we have learned about the obstacles for receiving safe, quality healthcare we have heard through our discussions, interviews and support groups,.  My workshop was attended by nursing students and social workers looking to learn more about advocating for the transgender patient.

Besides my session, I attended  several workshops and met many interesting and friendly people; I  learned more than I could have ever taught.  The themes of the workshops focused on topics for the transgender person such as surgeries, support services, insurance, laws and empowerment.  Most of these programs were open to providers as well as the community.  It was amazing how people learned from each other.   Some sessions were intentionally closed so participants could share among themselves in a safe environment.

Transgender is an umbrella term applied to a variety of individuals, behaviors, and groups involving people who vary from culturally conventional gender roles.   Transgender people can be gay, lesbian, bisexual or heterosexual  As some have said, it is not who you love (your sexual orientation- such as gay, bisexual or lesbian) it is who you are (gender identity).   An “alphabet soup” of achronyms are used to represent the LGBT population including LGBTQIAAQ, or Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex, Ally, Asexual, Queer.  These terms describe people who not just live but are born different than what many people call the “norm,” e.g identifying with our birth sex and being attracted to members of the opposite sex. Just as some people like spicy food and some don’t, the gender identity is what makes us who we are.  At birth our parents are told we are either a boy or a girl.  It’s time to recognize that the sex organs do not make the person.

The Philadelphia Trans Conference  there were hundreds, if not thousands of LGBT and non-LGBT people.  Some people at the conference love someone who is LGBT, while others attended to understand  better to include LGBT people in their work.  In many cases, the only way to recognize someone who was born a woman and went through the sex reassignment surgery to fully live as the man they were born to be is that they sit in front of the room and talk about their sex reassignment surgery  their life during their transition or mention, casually in their lecture that they were not born in the body they now have.  Some wear t-shirts that describe their transition or hint that their identity at birth was not what we see now.   

Some people share differently.  A person who resembles Clint Eastwood, Rocky Balboa or Morgan Freeman may be in a flowing feminine skirt, pink blouse, no makeup and heels.  Or, they may be in tight leather with lots of makeup, many piercings and blue, orange or (and) green hair, or any combination of the above.  Others looked like every day business people in their Saturday dress to go on a family outing.

Name tags have the person’s name and preferred gender; “he/him” or “she/her” or some had “they/them” which is very important for transgender people since many wish to pass as the gender to which they most identify. 

There were children who seemed as young as 5 years old.  I saw a child I know from Long Island who is about 8 years old and living a perfectly normal and happy childhood with her family as a little girl.  These children at this conference felt safe and loved for who they are – not for what society thinks they should be.

Our society likes labels.  However, despite the alphabet soup of terms and acronyms that could be applied, I learned the simple fact that no matter one’s sexual orientation, gender identity or gender expression, we are all people.  

The common theme that I saw in the workshops was that many trans people did not feel “safe” when using the healthcare system.  Imagine anyone of the people I described stepping foot into the emergency room.    Though he may have a perfectly good job, health insurance or loving support system at home, the first reaction of anyone might be to stare.   And though you (and they) may be used to the staring, it is the comments and inappropriate remarks that can be hurtful and insensitive especially if it comes from the people from whom you are seeking care.

One person shared a story that when he went to the doctor for a sore throat, the doctor said he doesn’t treat transgender people.  Another person said that because she wanted a private room instead of being put in a room with male patients, she was labeled as disruptive.

A professional person said that when she told the clinician she was a lesbian, the clinician didn’t believe that she had no sexually transmitted diseases.  

Some, with no one to support them because their family is not there for them for a variety of reasons, said they don’t feel safe when going to a doctor’s office for treatment.  Many questioned how to find someone who won’t judge them.

One workshop addressed diseases that are passed through sharing needles.  These diseases are not only transmitted from IV drug abuse but some transgender people may share needles to use hormones obtained illegally. 

I learned of many of these experiences through my work as an advocate and the Long Island Patient Safety Advisory Council  which addresses, among other groups of people the transgender community and their rights to safe patient care.  Despite my previous exposure to these issues, to hear so many more stories it brings alive the studies by National Center for Transgender Equality make me realize we have a long way to go to teach tolerance to even some of the most educated people.  Some facts from the 2010 study:

•   Subjects seeking health care were denied equal treatment in doctor’s offices and hospitals (24%), emergency rooms (13%), mental health clinics (11%), by EMTs (5%), and in drug treatment programs (3%).


•   8% of respondents were subjected to harassment in medical settings.


•   Very high levels of postponing medical care when sick or injured due to discrimination (28%).


•   Over a quarter of the respondents misused drugs or alcohol specifically to cope with the discrimination they faced due to their gender identity or expression.


These numbers are staggering and show the need for medical professionals to be trained in sensitivity and educated on the needs of the transgender community.  The cost of healthcare is high, but much of it can be changed with a safe place for people to go where they won’t feel judged, ridiculed or made to feel unsafe and get early care and treatment.  This is a journey I don't take lightly.  I hope others will join me in it.





 

Ilene Corina with Jacsen Callanan Philadelphia Trans-Health Conference
 Logistical Coordinator

End of Life Care(ing)

End of Life

“He died”.  The words shook me to the core though I knew it was going to happen.  “He” was an elderly man who was in hospice after having a stroke and being hospitalized.  He had Alzheimer’s and a family and friends who loved him.

In the past few weeks, I spent many hours on the phone with Bill (name is changed) who was his primary caretaker.  I suggested Bill for the job when an out of town colleague asked if I knew anyone who could care for her uncle.  Bill is a professional person who studied and worked as an occupational therapist.  Bill is smart, caring and has a gentle soul and someone I would completely trust to take this role as caretaker seriously.  He became a wonderful advocate, protector and friend.  He was happy, and became close friends with his client and the family he served.   Bill often thanked me for this position of trust.  It was I who should be thanking Bill for being the person I knew he would be.

Getting the call that his client has died meant a sad ending to a few years that Bill showed appreciation for but at the end, he shared the turmoil that he, and the family were going through.

His client, who was not in a position to make decisions for himself, had someone who would make the decisions for him.  But neither she, nor Bill knew what his client wanted at the end of his life.

The people in the hospital, and then in hospice held back food and water.  Bill would often tell me that he was frustrated and couldn’t believe that this was OK.  If this is what his client wanted, no one would be in a position to react, but no one knew if this was OK.  Depriving a patient of food and water and keeping him heavily sedated may seem to some as the most humane way to allow a person to die.  It didn’t feel right to Bill.  Each day he would tell me that he was going to learn the wishes of all his family and share his wishes with them.  This way, there would be no questions and the turmoil and energy that this family, including Bill is feeling in making these decisions, could be better spent on loving each other and grieving the loss.  What a gift we can give each other.

Too see a Living Will go to NY Living Will

More detailed information is here from the NY State Attorney General Health Bureau

End of Life Decisions and Care

End of Life

My heart breaks when I think of someone being alone in the hospital to help a patient, and not sure what to do.  It's not always because of the care they are receiving, but also because the loved one may not know what the patients last wishes are.

Bill (names are changed) is with Gary who he cares for as a paid caretaker.  Gary is elderly and sickly.  Bill has been with the family for many years and is watching Gary's decline.  As Gary enters the hospital and now can not speak for himself, there is no direct guidance on what Gary's wishes might be.  Do they fight for him to survive with feeding tubes and forced treatment to keep him alive or do they send him to hospice to die peacefully?

When the patient has family, and money, people come out and want to help make decisions.  This causes even more turmoil.  As Bill watches from the sidelines only able to give guidance to what he believes would be best knowing Gary so well all these years, he shares with me that he will go right back to his own family and make his wishes known.

Having a support system available to you before you need them is crucial and having these conversations though unpleasant are much needed.  The only guarantee we have in life is that we will die.  Why not than have the conversation now about what we might want?  It can be changed later. If you are healthy and young, you may want the medical team to fight for your life, but if you were so severly injured or sick, with no chance of a happy ending and would rather not be kept alive through forced feedings or machines, make these wishes known.

Don't be afraid to talk about it.  It's a gift you will be giving others.  

Here is a Health Care Proxy Form to help start the conversation.   http://www.pulseofny.org/resources/HealthCareProxy.pdf

Simple Lessons from NPSF Congress

National Patient Safety Foundation 15th Congress, and the simple lessons learned

I just returned from the National Patient Safety Foundation 15^th Annual Congress.  I know it should be better attended because I am a big fan of NPSF and the programs offered.    I happen to like that it is not as big as some other conferences.  It gives it a more personal atmosphere and people get to know one another.  You can pass each other in the halls and elevators and recognize faces.    The content of speakers are as good as one can make of it.  There are programs available for everyone’s interest.

The common themes, once again that I heard from participants is that they have found tools to go back and make it happen in their own hospital.

If this is what is happening when at the conference, why then am I still seeing such problems as the bedside?  If the one nurse doesn’t want to wash her hands or gives a patient an attitude about it (as a patient safety friend just shared during her hospitalization) then there is still a disconnect between what is actually happening at the bedside and these conferences.

When I checked in to the hotel and walked to my room, a staff person walked past me with no greeting or acknowledgment.  My first reaction was that this was not a Marriott Hotel.  At a Marriott everyone greets the guests.  Although I was greeted by every other staff person at this hotel, it stood out that one did not greet me.  It surely didn’t change my opinion of the hotel, but the experience stayed with me.  It’s often no different in hospitals.    Care may be perfect but we often remember the one incident that made us uncomfortable.  That is why we need 100% participation in safety, service and care when in the hospital.  There is no room for the one straggler.

Although so much more comes out of attending a conference like this, I just wanted to touch on that small piece.  Other things I heard was how to start a patient and family committee at a hospital. Ways to include patients and families in programs and projects.   Calling a Code Lavender when a patient may die or has died to send healing thoughts and prayers to the family and staff who are also in pain over this loss.  The list goes on and on.  Two days well spent.

 

Hospitals That Do it Right - Patient Safety is Priority

Finding Perfection

I just had the opportunity at a meeting to learn of hospitals that are doing such extraordinary work improving bad outcomes that they are winning awards and sharing their information.   Finding and sharing solutions is important to the industry to learn the best way to save lives, save money and improve the care and satisfaction of patients. 

Over the years I have heard that it is “almost impossible” to avoid all hospital acquired infections or injuries, but more and more I am learning that this is not true.  Those hospitals that are willing to work hard at changing the culture of staff and even the patients and their families will be able to reduce injuries.  It’s not impossible, it is hard work and we, as patients must demand perfection. 

The people who work in the hospital usually know what needs to be done.  But, on many levels there is a breakdown of either communication or people get too comfortable and forget proper procedures – as simple as hand hygiene.  As I sat on a bus with a physician following this meeting, I shared with her that the bus driver knows what he is supposed to do.  He knows that he needs to be well rested, stop at stop signs and drive the speed limit.  He can either choose to follow these behaviors……or not.  There is nothing we, as the customer can do to change what he will decide while we are in motion.  Why then are we, as patients expected to remind hospital staff to wash their hands, mark the site of surgery or make sure we are getting the correct medication?

A nurse at one of the hospitals that shared their stories, caught that a medication, meant for a small child was about to be given an adult dose.  The medication error went through numerous check points with many opportunities to be caught.  But, because this nurse stopped to check every medication as she was trained to do, this child’s life may have been saved.

The speakers all agreed that the change must come from the top.  Senior leadership willing to go to the end with a patient safety agenda that demands perfection, willing to fire people who don’t comply and reward those who do.

I still believe it must come from the customer too.  We must demand that it can be done and do what we can to share the information when we see something done correctly.

Care Coordinators

Care Partners

The first thing I asked was “is she safe?”  The elderly man on the phone called to tell me his wife fell and is now in the hospital.  They took her to the community hospital (all names are being changed for obvious reasons) and I waited at the general hospital, he said in a shaky voice.  No one told me where they were taking her.  He was very distraught and now felt even more vulnerable.

A loving couple in their 80’s and never significantly separated; he is her caretaker and just recently realized he may not be able to care for her any longer.  Her dementia, falls and incontinence are taking a toll on both of them.  “How can I help”  I asked.

He felt she was safe where she was but didn’t know what he needed.  In his long career, he was an expert at his work.  As a coach, he is an expert in that field, but when it comes to his need for healthcare services, he had no idea.  I went to his home and together we found his insurance policy, contact information and names.  I took their ID numbers, birth date, address and other information and started right away making the calls.

As a care coordinator or patient advocate, there are many roles we can play.  I couldn’t possibly tell him “This is what you need to do”.  He wasn’t in a position to do anything but visit his wife and hold her hand.  It took me a few hours but well worth the time starting a claim on their long term care insurance.  When I asked him about his policy he said “I just pay it each year” and knew nothing else about it.

I have been told that I should charge for the services we offer at the nonprofit organization PULSE of NY that advocates for safe care.  Helping to start a claim and having someone talk to the family about the available services, fixing the wife’s walker so when she gets home she is able to go to the bathroom with the help that is needed are all samples of patient’s safety.  How does one put a price on the peace of mind we are able to give to one another just by helping where it is needed?

Any small community group can do this for each other.  Care partners can all take a role whether its phone calls about insurance, equipment, medication or helping to manage doctor’s visits, one person can be the care coordinator and never has to leave their home.  From their phone they can just log on who will be coming to check on the patient, what they are able to do and at what time.

If more communities had care coordinators and care partners watching out for each other, we could all rest assured that our loved ones are being cared for and helped by people they know.  This won’t take the place of qualified nursing or medical care, but it is a way to make sure our loved ones are getting the best possible care.

Below is a sample care coordinators chart.

Start off by sending out an e-mail or make some phone calls that this person may (or will) be needing help.  Offer some choices of what people might do or ask them what they are willing to do.  Most people want to help but aren't sure how.  Are they a leader and can organize people?  Do they cook, are they able to deliver meals, visit?  Are they more assertive that they can help plan their doctors visit,  research medications or check on side effects?   All that needs to happen is someone decide the first step and you can plan a care team!

To Boston With Love

Following the Rush

In the days following the Boston bombing, we can carefully reflect on the hard work and heroism of the people of Boston.  No doubt the medical professionals outdid themselves over and over again.  Many training their entire adult life for the moments they can work long and hard to save lives and be prepared for the rush of people who depended on them last week.  Skills, expertise and compassion showed through in the reports of nurses and doctors who did their job under such duress only few of us could ever imagine.  May we never forget that this is the healthcare system we know and love and though this can never take away from the pain many have experienced because of its failings, we also must be grateful for the people behind those walls who are saving lives and putting people back together the best they can with the tools they are given.  God bless every one of them.

Patient Support

Medical Injury and Trauma

I took a two day course in New York City called Pastoral Crisis Intervention.    I called ahead to find out that I didn’t need to be a pastor or religious leader to take the course.  Although most of the sixteen participants were clergy of some type, the skills I learned in those two days had very little to do with being a religious leader.

Tragedy and trauma that someone may encounter after an event can be obvious or subtle.  Learning the mental state of a person following a trauma, making an assessment and possibly a need for referral must be fast and accurate.

Patients or family members who have suffered a medical error or anything that causes them to distrust or question the healthcare system can be severely traumatic.  At our most vulnerable, due to illness, injury or just age, we need to trust those who are caring for us and often making life decisions.  Each time we are asked to sign a consent (which won’t happen in an emergency anyway) we are trusting the professionals to do the right thing.  When that trust is broken, then what?  It’s not like we can say let’s do this over. 

There is a cost to not receiving help that goes beyond the patient’s rights.  Patients or their family members may avoid care until an illness needs attention that costs more and takes more time.  Avoiding treatment because a patient is fearful of the healthcare system is a symptom of post traumatic stress.  Not being able to overcome their fear, anger or depression because someone they love was injured or killed by a medical error, medication error or hospital acquired infection can be deadly.

When there is an unplanned outcome with someone’s medical treatment, it is important that they are assessed for trauma.  It can make a big difference in their future medical care and that of the people close to them.

When My Work is Easy

Patient's Safety and So Much About Communication

A man from the north eastern part of the country speaks to a colleague in the south about his brother’s friend in a Long Island hospital.   He feels that the care is below acceptable standards for a variety of reasons.  Knowing about PULSE of NY, the person in the south recommends that I might be able to help.  The man from the north calls me and I tell him he must have his brother call me directly.  It is not my place to call when I hear a story through someone else.  I am not looking for cases and if the patient or family have worked it out, I have no business getting involved.

Minutes later I hear from the brother, Bill (names are changed).  Bill is visiting Long Island when his friend became hospitalized.  He is concerned about the care.   Bill is not being permitted to stay overnight by the nurses.  He feels there is a shortage of nurses and his friends care is being compromised.  He does not feel he is getting a full accounting of his fiends care so he can be helpful.

I offer to go visit but first I will make a phone call.  I ask him to be honest, has he lost his temper?  Who has he spoken to?   Does he have names and dates?

When we finish this conversation I call to management at the hospital.  Explaining briefly what is happening, within minutes of hanging up the phone they are at the patient’s room clearing up misunderstandings.   The patient’s loved one’s received explanations and apology and days later the patient is released with only positive things to say about the hospital and care received.

The problem; The senior level staff are busy running a hospital expecting the people at the bedside are giving quality and patient centered care.  With the possibility of shortages of staff, overwhelming admissions and paperwork, compassion and communication can easily get lost.

A gentle reminder that there was a communication breakdown happening within the hospital is the best service we can offer.  In this case, as with most, there is a legitimate concern that rules and policies are not being followed.  Patients are permitted to have someone at their side.  There was no reason Bill couldn’t stay, but because that’s the way it’s always been done, no one was looking at how they could make this work so the family could feel safe and satisfied.  It took an outside phone call to help build a bridge to better communication.

How do we measure this success?  Would the outcome have been the same if there was no intervention?  There is no way of knowing.  What we do know is that there was a happy ending to this story.  Another day and the patient may have had a bedsore or been given the wrong medication or worse were the friend not at the bedside.  There is no system in place to count the lives saved by an advocate’s intervention.  If there were, we could start counting.

Safe Doctors

Physician Profiles

An article in Long Island Newsday by Reporter Robert Kessler was released on Wednesday March 20, 2013 that Dr. Gracia L. Mayard, a New York physician surrendered his license to prescribe controlled substance in February but continued to prescribe Oxycodone.  There was a warrant out for his arrest.

Mayard’s license was surrendered on February 7 but a pharmacist reported a prescription written on February 28.  Just yesterday, on March 21, Maynard was “captured”.  The report says that he brought in $1.2 million in less than two years.

It’s safe to say that this physician is a criminal and a drug dealer and a danger to the public.  He had been selling prescriptions for $150.00 the report says.

When we look up the name Garcia L. Mayard on the NY State Physician Profile website www.nydoctorprofile.com,  Mayard comes up that he is a licensed practicing physician in New York State.  He is listed as a practicing general surgeon with two offices in Brooklyn, NY and no discipline against him. 

Healthgrades also has him listed as practicing in Brooklyn and Vitals.com has him listed with a perfect rating from a satisfied patient.

It is appalling that this story has completely gotten past our NY State Patient Safety Center that was developed to protect us from unscrupulous doctors such as this giving fine physicians a bad name.  I understand that we can not play judge and jury and he is entitled to his day in court, but there must be a system in place that patients (and their concerned family members) are better aware of these happenings so new people don't fall victim (in case it is true).