The Tonsillectomy

Just My Opinion

A child goes in for atonsillectomy and comes out of surgery “brain dead”.  The family wants answers, the hospital wants to disconnect her from life support.  The family wants to move the child to another facility. The hospital wants to disconnect her from life support.

This story is eerily similar to another case I know intimately.  Over 20 years ago my only child at the time went in for a tonsillectomy.  He didn’t come out brain dead but he did die a week later from blood loss after 4 different doctors on 5 different occasions told me don’t worry, the bleeding stopped and he’s fine.  What an awful way to prove doctors wrong. (By the way, I have had about 10 calls over the years from families who lost a loved one from a tonsillectomy)

This is another opportunity to show not only how dangerous surgery, including the tonsillectomy is, but it also shows that there is a problem with communication between the patient (in this case family) medical providers and the press.

Here are my thoughts.  There are 24 hours in a day.  There is a lot more happening in that 24 hours than the media is telling us.  We aren’t getting the whole story.  What I am getting is that this family is not getting the answers they want nor are they getting the respect they deserve.  If they were, chances are they would never go to the press and if they were, the press wouldn't be interested.

If in fact, this was a medical injury, caused by the care she received, it would be great if the hospital did everything and anything the family wanted - including keep her heart pumping, get her to a different facility and get counseling for the family and staff.  But, it is probably too costly to do that.  Plus a medical malpractice case would cost more if she does live and needs more, long term care.

I would think that this would be a great case for medical mediation.  The family, the hospital and their lawyers would need to approve of a conversation / dialogue to each be heard.  What are the needs of each involved?  Honest, open, confidential dialogue that can be kept out of the press should be part of the families and lawyers suggestion.   If in fact this is a local hospital, that this family may need again, why would they want to be wrapped up in a lawsuit for years?

Through mediation, the family can ask for financial compensation an apology, answers and even a way to make sure someone learns from what happened and not close it away someplace so patients can’t learn nor can the medical system learn. 

I wish they had that available 20 years ago.

IPFCC

Institute for Patient and Family Centered Care

Gentle, compassionate, caring, warm, friendly, kind are just some of the ways patients and their families describe the care they receive at hospitals that are patient and family centered. The skills of the medical team seem to never be addressed.  It is the way people are treated that we remember.  We expect when flying in a plane to get to the destination. So, when the service is extraordinary, the staff friendly and the seating  comfortable, that’s what stands out.  The same goes for hospitals, clinics and at doctor’s offices.  Ask almost anyone what they think of their doctor and they will tell you they like him / her because they are nice, listen or are friendly. 

I had the opportunity to hear similar stories at the IPFCC conference held in Minnesota last week.  It was uplifting, educational and moving.  It was a week of learning ideas that “work” or have worked to make a hospital patient and family centered.  Making for better outcomes often is based on communication and the better communication, feeling of acceptance, respect and treated with dignity builds relationships.  Honest, open relationships can mean better outcomes.

One woman shared the story of going to radiation with a friend and they dressed up in costumes.  (An appropriate story for Halloween eve).  Soon the others receiving radiation were also dressing up in costumes and instead of no one talking to each other, at each treatment there was laughter and friendship.  The presentation ended with a slide show of patients in costumes hugging and laughing.  There wasn’t a dry eye in the room of over 400 people.

What does patient centeredness mean?  It was a common theme of medical professionals, patients and family members at this conference.  Most were representing patient and family advisory councils where the patient or the family members of patients come together and talk about improvements to the hospitals or healthcare system they use. 

Visiting policy, the human touch, talking eye to eye, how patients share their stories were some additional topics.   Work groups were formed over lunch to develop an action plan helping to move each person’s or groups agenda forward. 

Breakfast roundtables were for researchers, PFAC members, nurses, social workers or any group you may want to start, a sign would be ready at a table for you.  Patient and family centeredness can mean something different to anyone, or it can mean a lot to one.

I "vote" for Patient's Safety

Who to Vote For When Your Issue Doesn't Count?

As election-day comes upon us, it is hard for me to choose who I want to vote for.  Campaign promises come and go but my issue is patient’s safety and no one wants to take that up.  This year, I approached the county administration to support the Designated Medication Manager (DMM).  This would offer a tool for the general public to understand how they can help each other reduce medication errors, dependency and misuse of prescriptions, vitamins and herbs.  I was told that that for the county to support  a DMM it needs approval from the medical society.  The medical society’s role is not to protect the public, it’s to protect the physicians (who protect the public).  So, we can be sure Nassau County Executive Ed Mangano is not going to protect the public unless it’s approved by the special interest. 

Tom Suozzi on the other hand was approached when he was in office too.  We asked him to get involved in patient safety.  That too never happened.  As long as $1.00 of Nassau County funds is going to healthcare costs, safety must be part of the conversation.

A recent meeting hosted at C.W. Post campus of Long Island University about the future of healthcare on Long Island didn’t address patient safety.  The conversation didn’t turn to safety until members of PULSE of NY, a community based patient safety organization brought it up privately and interviewed some of the panel members.

There is a tremendous cost to the economy that can be reduced.  Are you tired of hearing that 98,000 people die each year from preventable medical errors?  Well good, because the new number is 440,000. 

Costs of medical errors in the United States of $19.5 billion during the year 2008 according to the report by  The Economic Measurement of Medical Errors  Sponsored by Society of Actuaries’ Health Section.

Imagine that with each death there is the loss of an employee, now someone new needs to be hired and trained.  A patient who misses work and needs a temporary replacement because of a hospital acquired infection, a second surgery or a missed diagnosis.   Life insurance policy payments stop but are now distributed to the patient’s family.  A misdiagnosis is costly when tests must be redone. 

Patient’s health can get worse and not better when there is simple communication problems.  Patient’s who don’t understand what the doctor meant when he said “come back in two weeks” or a patient who doesn’t take his medication because he forgot, didn’t understand instructions or can’t afford the pills for his chronic condition.

Medical errors are not about blaming anyone.  We need the public to know how they happen and how they can be avoided.  Medication errors injure 1.5 million people a year creating huge healthcare costs.  A Designated Medication Manager can help change those numbers but it’s not important enough this year I suppose.

Anesthesia Patient Safety

Jeffrey Cooper PhD

Remember when the biggest fear of dying in a hospital was the anesthesia?  We don’t hear about anesthesia deaths anymore – or at least not too much.  Maybe that’s because the Anesthesia PatientSafety Foundation was formed in 1985.  Through research and the sharing of information, advances have been made and lives have been saved.  Jeffrey Cooper PhD is the founder and Executive Director of the Center for Medical Simulation, which is dedicated to the use of simulation in healthcare.  He is also a founding member of the NationalPatient Safety Foundation and a colleague of mine on the board of governors of the NPSF for many years.

I remember years ago when I visited the simulation lab run by Dr. Cooper in Massachusetts.  I stood behind the glass and watched the physicians as they did “surgery” on mannequins.  The person behind the glass with me would make things go wrong so the anesthesiologist would have to find the problem.  I still remember that it was a mucous plug clogging the breathing tube.  The young physician couldn’t find the problem.  In this case, the patient would have died if it were real.  But it wasn’t real – no one died and I bet that doctor never made that mistake again.  This is what they do daily there – save lives through education in one very important area.

Dr. Cooper received the highest honor from his colleagues at the The American Society of Anesthesiologists, The Distinguished Service Award.  It’s my personal honor knowing him all these years and knowing what an impact he has made in safe patient care. Congratulations Dr. Cooper on this recognition.  I wish it could have come from me!

Who is Responsible for Patient's Safety

Your Telling it to The Choir

Dr. Bob Wachter wrote in his blog Wachter’s World about the recent conference in Chicago on diagnostic errors.  Dr. Mark Graber, a trusted physician and advisor to PULSE of NY for many, many years has been passionate about diagnostic errors in medicine since I have known him.  He founded the Society to Improve Diagnosis in Medicine.  The only thing I think Dr. Graber is almost as passionate about is disclosure to the patient and / or their family when something goes wrong. 

There are a few good, no great medical professionals like Dr. Wachter and Dr. Graber out there who are passionate about patient’s safety.   Some, because of their own experience and some because their fear that their number may be up soon.  With numbers like the recent study that there are as many as 400,000 deaths in hospitals due to preventable medical errors it seems to be only a matter of time that everyone will experience either an unplanned outcome to themselves, a friend or family member.

What I don’t get is why are there constantly conferences for medical professionals to learn better ways of doing things.  There is some improvement, but the focus needs to be more on the public.  When the public learns what WE are supposed to expect, we can start expecting no less. 

A recent program I did for the community of about 20 people brought together a mix of homemakers, business people and blue collar workers.  They were learning for the first time that things can go terribly wrong in hospitals.  I am careful to explain that for every “bad” thing that happens, there are thousands of good outcomes too.  But, would our government and medical societies be pumping patient safety money into a system that works?  I just fear it’s being pumped into the wrong place!

Here is something that can be done: Cautious Patient Communities

Jerod Loeb PhD

I Will Miss Him

A great man died today.  Jerod Loeb worked for the JointCommission.  He was the Executive Vice President for Healthcare Quality Evaluation.  A researcher, scientist, PhD, he was brilliant at his work.  But what made him most special was his humor, the way he explained things and way of speaking to me, a lay person at TJC, in terms and words I understood.  He was always sure to make sure I knew what he was talking about.  Funny and lively, Jerod was a brilliant, but very approachable and not in the least bit intimidating.

The last few years, even more powerful, he became a patient - openly fighting cancer.  He was gutsy enough, time after time to tell his audience, usually of medical professionals, what it was like to now be on the receiving end of sometimes questionable care.  Each time I saw him, he would have stories about his care.  He recorded the past few years on a website so his friends, colleagues and loved ones could follow along.

I didn’t see Jerod often, but I always knew he was someone I can count on.  He had a loyalty to the patients that the customers of the Joint Commission serve -  because he was one of us. 

Rest in peace Jerod.

September 11 Again

Can We Learn From Other Tragedies?

I watched the September 11, news coverage yesterday.  From 8:42 AM when the first plane hit, and in the hours that followed, MSNBC replayed every moment as it played 12 years ago that day.   September 11 is etched in the minds of so many people.   I didn’t see all the reports that day.  I was running to the school to get my children as so many other parents did that morning.   When we hear the numbers 9/11 we think of that day.  When we get on a plane and have to wait in long lines or we can’t carry on liquids in bottles larger than 3 oz. or I see the German Sheppard, bomb sniffing dogs in the city I know it’s for my own safety.  It’s a way of life most of us have gotten used to.

I asked a friend if he watched the news and he said he can’t, it brings up too many emotions.  I thought to myself that he must get it then why I struggle each time I hear a report about a misdiagnosis, hospital acquired infection, surgery that has gone wrong or someone who got the wrong medication.  Each time it brings me back to the pain of losing a loved one because of their medical care.

Changes have been happening in hospitals, but not fast enough.  There is rarely a lapse in sending a customer through the metal detector, or checking their bags or security missing someone getting a gun on the plane.  But, still in hospitals we are expected to ask a nurse or doctor to wash their hands.  When was the last time we had to ask to go through a metal detector?

Imagine if we had to live in a world where we had to remind people what their job is, especially when it comes to safety?

5 Tips for Helping at the Hospital

5 Tips When Taking a Friend to the Hospital

Here are just 5 some simple basic tips if you bring a friend or family member in to the hospital for surgery or a procedure.  You will probably be in a room waiting with the patient.

1)   Find a pair of gloves and the antibacterial wipes.  Wipe down the bedrail, door knobs, tray table, call bell, chair and anything else you want  to keep busy and useful.  You and the patient are bringing germs in the pre-cleaned room.

2)   Be sure each person who comes in introduces themselves and tells you or the patient why they are there.  “Hi, I’m Lynn and I will be your nurse.  I’m here to take some information from you”.

3)   Make sure they are wearing an ID badge, that means cleaning crew, transport and doctors.  Yes, you can ask “Do you have an ID badge I don’t see it?”

4)   Anyone who talks to the patient or moves the patient must ask the patient two identifiers such as name and birth date.  Not to verify but patient needs to say it.  Be sure the wrist band is correct also, it will follow the patient.

5)   Hand washing is crucial to help avoid infections.  “I know you probably washed already but I would appreciate you washing when you get into the room so we can see.  I’m here to make sure my friend doesn’t an infection”.  Make sure this is agreed upon by the patient keeping the patient always as the team leader.  By making it about you, and the patient, and not about the nurse who didn’t wash, they won’t get as defensive.

Asking too much?

A Day in the Life

 

I couldn’t exactly chase them down the hall, but three times I asked the person taking the patient to surgery if he was going to ask the patient her name and birth date.  Each time he said he knew who she was.  I was in disbelief that given ample opportunities to follow proper procedure, this person, who never introduced himself and was transporting the patient to surgery opted not to ask the patient her name or birth date.

Later, as I wait the 3 hours during the surgery to hear from the doctor that the patient is fine and in recovery, I picture all the things I could have done;  Refuse to allow the patient to leave?  Stand between the patient’s bed and the elevator?  Should I have screamed “HELP, HE DIDN’T ASK THE PATIENT HER NAME AND BIRTHDAY?”

The morning started early, we had to be at the hospital at 6:30.  When I asked for antibacterial wipes to clean up the room, I knew I wasn’t going to win any new friends.   The nurse hesitated – even told me the room was already cleaned.   But, I explained, that the patient came from outside and was touching everything in there and it needed to be wiped.   I was surprised at the black dirt that came up.  I showed the nurse.

I was confident the surgery would go well – and it did.  The staff at the hospital were friendly,  answering questions, giving the patient appropriate time.  The problems I am addressing are not, in my opinion a systems problem.  It is people knowingly deciding not to do their job properly or to the best of their ability.  Sure, the dirt in the room was from one chair (although in another room it was on the radiator and window ledge). Could someone have forgotten to clean it?  Of course, but it shouldn’t be a pattern.  Did someone forget to teach the transporter to ask the patients name and birth date?  Probably not.  Did they tell him about the people who have suffered through errors because of staff not following the rules to make an impact so it doesn’t happen again?   Would anyone in charge allow any of this to happen to their family?   I’m confident this staff doesn’t know what we know about patient safety.  They need to know.

Advanced Directives and Patient Safety

Are Advanced Directives a Patient Safety Issue?

A great man died this week.  Most people won’t know him.  He was a member of the congregation I have belonged to for over 25 years.  He was diagnosed with cancer that quickly took his life in a matter of months after the diagnosis.

According to the Society to Reduce Diagnosis in Medicine there are an estimated 40,000 – 80,000 deaths annually in the Unites States from diagnosis errors.  Diagnostic error is responsible for billions of healthcare dollars for inappropriate care, and is the leading cause of medical malpractice claims.

As the patient, a prominent and well loved member of a close community, quickly became sicker and weaker, his wife was forced to start making decisions.   What doctors are the “best”, what hospital should they use that would support their wishes of care and as things progressed quickly, what to do now that he had to leave the hospital;  nursing home, rehab or hospice?   Does he need at home care or should he be in a facility that he could get care?  What could they afford and now that he is weaker, what would he want?  What could his wife live with?  Could she really take him home to overwhelm her life and home?  What does it all mean and why, oh why couldn’t his lovely wife just sit at his side and hold his hand as the end of his life comes to a close?  

How do we make these decisions before we need it?

How do we want our end of life care to be?

Is this a patient safety issue? 

I put the question out there because I struggle myself to explain how advanced directives or living wills fall under the heading of “patient safety”.  Patient safety, as described by the corporate world is very different than that of the advocate / activists side. 

According to an 18 page paper by some of our patient safety leaders;  What Exactly is Patient Safety; quality is described as three parts, underuse, overuse and misuse.  The term misuse became the term for conceptualizing patient safety as a component of quality.

Patient safety is a discipline in the health care sector that applies safety science methods toward the goal of achieving a trustworthy system of health care delivery. Patient safety is also an attribute of health care systems; it minimizes the incidence and impact of, and maximizes recovery from, adverse events. 

The National Patient Safety Foundation  describes patient safety as the avoidance and prevention, of adverse outcomes or injuries stemming from the processes of healthcare.

I asked members of a patient safety advocate Facebook page what they thought of advanced directives and end of life care being part of patient safety.

The response is an obvious “yes”.  Advanced directives is a patient safety issue.  Here are just some of the comments:

• When unwanted or unnecessary medicines and procedures are done at the end of life (or any other time for that matter) they bring risks.
• Root-causing the failure to die in peace underscored for me, even beyond our personal experiences, that safety is more than physical. It's existential.

Although one can argue that advanced directives and making your wishes known is a human rights issue or encourages patient empowerment and makes healthcare more patient centeredness and does not fall into a patient safety category.  But, if we think of advanced directives as “informed consent” of which it really is, it surely becomes a patient safety issue.

I would love to know your thoughts.

 

Here are some things on the topic you don’t want to miss:

Bart Windrum Dying in Peace                                                  

http://tedxtalks.ted.com/video/Dying-IN-Peace-to-Die-AT-Peace;search%3Awindrum

Institute of Medicine Committee on Approaching Death: Addressing Key End of Life Issues: Second Meeting

http://www.iom.edu/Activities/Aging/TransformingEndOfLife/2013-MAY28/Videos/1-Feinberg.aspx

Decide now who will be your agent and speak for you if you can't speak for yourself and ask yourself, do they know what I want?http://www.pulseofny.org/resources/HealthCareProxy.pdf

CBS News on Medical Misdiagnosis 

http://www.cbsnews.com/video/watch/?id=50146628n

 

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

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