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 I can start to describe this amazing event that triggered so many different emotions. I wonder 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 went as a speaker to hold the PULSE of NY, Family Centered Patient Advocacy Training and discuss the work we have done with transgender patients as an advocate for them during hospitalizations and medical care and learning through discussions, interviews and during their support groups, what it is like to be a transgender patient and face obstacles for receiving safe, quality healthcare.  My workshop consisted of nursing students and social workers looking to learn more about advocating for the transgender patient.

I sat through some other workshops and met many interesting and friendly people and 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.  People learned from each other.   Some were closed so participants could share among themselves.

Transgender, an umbrella term is 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.  They can be cross dressers, trans-sexual or as some have said, it is not who you love such as gay, bisexual or lesbian, it is who you are.  LGBTQIAAQ,   or Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex, Ally, Asexual, Queer, describes people who not just live but are born different than what many people call the “norm”.  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.

Here, there were hundreds, if not thousands of people who either live this life.  Some people at the conference love someone who lives this life and others want to understand this life better to include them 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 sexreassignment 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.

A person may have the face and build of Dolly Parton but wearing a baggy jacket, jeans and sneakers with a baseball hat turned around.  This person walks in struts and stands with hands in their pockets high fiving old friends while hugging new ones.  Name tags have the person’s name and preferred gender; “he/him” or “she/her” or some had “they/them”.    



There were children who seemed as young as 5 years old and one who 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.

Although we, as a society want to label people one of the many letters in the “alphabet soup” of sexual orientation and gender identity, in just my three short days with this group of loving, fun, smart and now, to me, normal people expressing themselves, the label we need to give each of them is “person”.



The common theme that I saw in my travels through the workshops was that many of these people did not feel “safe” when using the healthcare system as we know it.  Imagine anyone of the people I described stepping foot into the emergency room and though 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 working in the hospital.

Healthcare providers might challenge them realizing that the person who has come through the door is not a person they have “studied” in medical school.  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.  One workshop spoke about the diseases that are passed on through sharing needles are not just from IV drug abuse but even those who don’t use IV drugs may share needles to use hormones obtained illegally.  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.

Many of these issues I learned as an advocate and through the Long Island Patient Safety Advisory Council which addresses, among other groups of people the transgender community and their rights to safe patient care.  But 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 further in sensitivity and 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.