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

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.