Friendly is Not Safety

Towel used to clean patient's bed

The room is lovely.  An oversized couch, a recliner and another high back chair. There is plenty of shelf space in the single occupancy room and downstairs a cafeteria that is inexpensive and open until 1:00 AM.  In most cases staff are friendly and accommodating offering me coffee, blankets and comfort items.  I can use the patient’s bathroom, ask questions and am accepted as part of the patient’s team – until I asked the first nurse who walked in the door to please wash her hands.   She grudgingly did so but also told me that it dries her hands if she does it too often and she did before she walked in the room.   “I didn’t fly all these miles here to have this patient contract an infection” I told her jokingly.  She used the gel in front of me.   I also requested early on, that the patient reviews all medications that she gets.  The patient agreed that the “order” came from her and not me.  Word may have traveled since others who have come into the room have scrubbed what seemed to be up to their armpits.  Some don’t.

When one tech came in and I asked him to wash, he told me that the antibacterial gel is better.  I told him that antibacterial gel does not get rid of c-diff infection.  His response “we don’t have c-diff in our hospital”.

Before the patient arrived from surgery and after I watched the tail end of the staff clean her room.  I went in, with the hospitals own antibacterial wipes and with my gloved hands wiped down the side rails of the bed.  With the patient’s 2 friends watching, as I explained to them what and why I was doing that, the photo below is the dirt that came off just around the bed area.

I continued to wipe down the door knobs and the doors, remote control, call bell, sink and tray table.  Anything someone might touch including the marker that is used to write the nurses name on the white board.  Since I got into the room before the patient, I was able to wipe down the IV pole, screens that are touched to set alarms and the computer keyboard and mouse next to the bed.  All came up dusty if not dirty.

This patient, who has open wounds from major surgery is susceptible to infection at many different points.  Though everyone is friendly and accommodating, I just can’t help but not feel this patient is still lacking some basic safe care that is obviously not consistent to everyone who works here.

Following are some links about C-diff

http://www.webmd.com/digestive-disorders/clostridium-difficile-colitis

http://www.cdc.gov/hai/organisms/cdiff/cdiff_infect.html

Patient Centered Smile

Measuring Kindness?

The patient, we know will die at some point from the cancer that has quickly taken over his body.  After a treatment, he is too weak to go home with his wife and now ends up in a hospital that I often hear advertised on the radio.   I am familiar with this hospital and its specialties as being one of the best.  This is a “great” hospital to be in if you have cancer – but what makes it so great?  Is anyone counting the survival rate?

When I arrived with the wife who has to start making decisions about her husband coming home, we park in the parking garage where the attendants are shouting orders to people to move their car and telling them what to do next.  As we walk through the hallways, people who obviously work for this hospital are engrossed in conversation, staring straight ahead or talking on their phone.  I looked for eye contact or any acknowledgment that we were customers of this facility. Nothing.

The wife left messages, and needed to speak to the discharge person to take her husband home, get home care, or bring him to a hospice facility.  Her calls weren’t returned so it was best to get to the hospital to have a conversation.  The discharge nurse was involved with other patients and we were told she would be paged.

As I often tell Care Coordinators how they can help, I was there to make this meeting happen so the wife could just be at her husband’s side.  After working on phone calls about insurance, medical needs, paying bills and dealing with her husband’s business information that she was never before involved with, I thought that the least I could do is help make this meeting as smooth as possible.

When I walked over to what I thought was the nurse’s station where 2 women in white coats were working on a computer, one looked up and said “The Secretary’s desk is over there” pointing to the other side of the hallway.  She didn’t smile, she didn’t ask what my needs were; she just pointed with a pen.  The woman next to her looked up also and then immediately back at her computer.

Besides the very charming aid in the patient’s room, this was my first encounter at this hospital with a medical professional who actually spoke to me and the nerve endings in my arms and back stood straight up.   I knew why I was angry, upset and frustrated.  It was because my first encounter with a medical professional hadn’t had the decency to smile and no one has yet to make me feel welcome.

I asked the “secretary” for the discharge nurse who said the patient’s nurse had to get her.  Then I was told the nurse was busy with other patients.  I asked the aide and he said that he would see to it that the nurse gets the message.  The nurse comes out and tells me the discharge nurse is busy.  When I tell the nurse that we came to the hospital because the wife’s phone calls were not being answered, he then called the discharge nurse.  It’s now getting late in the day so I asked for the nurse manager.  I was now told the discharge nurse is waiting for an important call and will see us when it comes in. 
At each opportunity I was made to feel that others needs were more important than our needs.

So it goes that this may be a wonderful, or even the “best” hospital but I may have been a different person going in were staff to smile, greet me warmly, pretend I was important or even acknowledge us as a customer. 

Patient safety or patient centered care can start with a simple smile.  It costs nothing but opens doors for better communication which we all know leads to better outcomes.

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