Wednesday, November 28, 2012

What's the Plan?

Getting the Plan


He is a very, very large man.  He is not warm and fuzzy but instead outspoken and assertive.  He is disabled with the loss of one leg following a horrible accident almost ten years ago.

He was found in his home, during Hurricane Sandy in water neck high when his electronic wheelchair stopped working.  He yelled for his girlfriend to get to higher ground with their dog.  He waited there until he was rescued.  His rescuers brought him to a local hospital.  His girlfriend is still in a shelter with no place to go waiting for some help and direction.  Their beloved dog has been left to be cared for by others.
He met me, on this visit, in the lobby of the hospital in a new loaned electric wheelchair that he used to scoot around the hospital lobby.  While sitting and talking with him, he shared that his “good leg” was in a lot of pain but he wasn’t getting his pain medication.  When I looked down, I waited for him to remove his sock but soon realized it wasn’t a sock at all but his leg was turning dark purple or even black.
“What have they done for this” I asked him.  “Nothing” he told me.  He said he told someone about it two days ago but still no one has done anything about it.  I brought him in his wheelchair to the nurse’s station and asked for someone in charge.  The nurse told me she was in charge and would call the doctor to meet us in his room.
I asked the man who came in if he was the attending.  He told me he was a resident.  “What year” I asked.  “First year” he said.
I asked him to look at the patient’s leg and let him know what will be done about it. As the first year resident put his hand out to touch the elevated leg, I stopped him and said “please wash your hands before touching him”.  He complied and then took gloves and looked at the leg.  He said he didn’t know what the problem was.  I insisted he find out.  “Is there anyone who would know?  A vascular doctor, the attending, someone has to know before I leave what the plan is to treat this?”   The young man avoided eye contact with me but kept looking at the leg.  When the silence went on too long I asked him, “If this was your father, brother or child, would this be ok?”  I kept reminding him we need a plan of care but the resident tried to talk about the patients discharge and going to rehab.  He said this is where they would be able to treat this better.
I would not let him change the subject and told the resident that we are not discussing rehab right now, there is a problem right now that needs addressing and I can’t leave until I and the patient know the plan.
The resident said he would find someone with an answer and left.
He returned a few minutes later and explained that his leg needs to be elevated. “Now that’s a plan” I said.  I asked the patient if he understands that and asked what he will do?  “I can’t keep it up 24/7” he said.  The conversation was now between the doctor and patient.  The dark color was already fading.

Thursday, November 15, 2012

Improve Diagnosis in Medicine.

Diagnostic Errors in Medicine; We’re talking about it now!

We now have something else to talk to patients about when it comes to medical errors.  Diagnostic errors.
I had the privilege this week to speak at Diagnostic Errors in Medicine (DEM) Conference at Johns Hopkins University, Baltimore.  There was a new group launched called Society to Improve Diagnosis in Medicine.  Their mission; We envision a world where diagnosis is accurate, timely, and efficient.
I took this from their website; “Diagnostic error, defined as wrong, missed or delayed medical diagnosis, occurs in 10-15% of cases, leading to immeasurable harm and billions in inappropriate medical costs. These errors are also the largest contributor to total medical malpractice payments”
So what can we learn from this?  The conference leaders brought in many different speakers who have experienced diagnostic errors as well as medical professionals willing to talk about them.  We learned from the patient’s perspective that the doctor isn’t always right.  For hundreds of years we have been asking the doctor what’s wrong and we expect the answer and the treatment to make us well again.  We are now learning (I have known this but now the docs have let the information out) that we should probably be asking the doctors his / her advise and then we make a sound judgment , after gathering all the facts on what needs to be done.  
I spoke about communication and how body language plays a big role in our sharing, or not sharing of information.  If we don’t feel comfortable sharing, we may forget to tell the doctor something to help with the diagnosis.  Do we understand the explanation about our treatment?  Maybe not.  It is not low literacy as someone insisted to me. It is poor communication, usually on the clinician’s part.
One researcher insisted that she can tell who patients are with low literacy because of how they struggle to put sentences together.  I suggested that many people with low literacy have a very sophisticated vocabulary and have used that as a tool to cover their lack of reading skills.
Many people have heard about a misdiagnosis.  It can be a stomach ache that was actually an enlarged appendix that burst, or a deadly ectopic pregnancy where the doctor tells the patient to take an antacid.  A patient who has a misdiagnosis that a painful infection is a rash or being told that there is (or isn’t) cancer when the tests, which went unread, or were misplaced were the basis for lack of communication.
Rory Staunton’s dad was there talking about his son’s misdiagnosis of an infection.  Rory was in deep pain following a scratch at gym during school.  At  a New York hospital they didn’t wait for the lab results to come back showing he was compromised and soon after Rory died from an undiagnosed infection that got into his blood stream.
It’s easy after the fact to say what the family should have done but we, the patient don’t always know that doctors make mistakes.  It’s up to each one of us to now know that.
The following morning after Mr. Straunton spoke about his son, he sat with me at breakfast and told me some of his real feelings that he has as a dad.  He used the words that I remembered using so well when my own son died years ago.  It wasn’t only that his son died that is so painful but Rory died because his parents trusted the doctors to care for their child.  That trust makes it much more painful.  Ciaran Staunton shared stories about how wonderful his son was.  How smart he was and caring he was about others.  Rory, like many advocates can change the world.  Sadly, he just won’t be here to see it.

Sunday, October 21, 2012

Assessing the Pain


Pain Meds for You
I walked into the patient’s room and his adult children stood around his bed concerned about his pain after surgery.  He was still in a lot of pain days later, but told us he didn’t know what the nurses thought was a lot of pain when they asked him how he was feeling.  He just kept saying he was OK figuring that’s what they wanted to hear.
I asked the nurse about him getting medication.  I knew she was busy with other things but thought it was important that she knew he was not wanting to complain but was still hurting.  The nurse agreed and went about her work.  I waited a reasonable amount of time and when she didn’t come, I went back to her desk.  She was still at her desk doing paperwork.  I now asked her “when you assessed his pain on a scale of zero to ten, what number did he give you?”  The nurse looked at her papers, looked at me and jumped to her feet.  Obviously realizing that she, nor anyone else had properly or appropriately assessed his pain, within 3 minutes she was in his room asking about his pain and distributing his pain medication.

Monday, September 24, 2012

Should We Close Down a Hospital?

Close Down a Hospital For Unsafe Care; Is that the Answer?
I spoke at a large group of about 100 retired professionals this week. The topic was Patient Safety and I covered the usual falls, infections, literacy, surgery and medication safety. We touched on advanced directives, generic brand medications and communication. Following the presentation I was met with a flurry of compliments from people about how informative it was.
A woman came up to me and asked privately “how do we have a hospital closed down?” I asked her why, and she said it was a terrible hospital. She wasn’t giving me specifics but pressured her to think about her comment, “why would you want a hospital to close and not improve?”
I finally got her to tell me that they released someone from the hospital who was not ready to leave. Her anger and frustration was apparent and I suggested that we can meet with the hospital administration to share what she witnessed. 
It isn't unusual that in the helplessness of caring for someone we love and feeling that we are not being heard, a family member gets angry at the situation and takes it out on the entire establishment that they trusted. 
I have learned to recognize that when someone is treated poorly or there is an injury or death of a patient, their loved one's want to punish the place that caused them grief.  They don't see that in the next house there is a family who survived the care, and may be alive today because of that facility.  So, as a society, how do we improve on the "little" things that may have been an injury or caused a death to a patient before it becomes a tragedy?
If that women never acted on what she witnessed by reaching out to the hospital, and I can't because we haven't met to talk more about it, then there is a tragedy waiting to happen that can cost the life of a patient.  Closing the hospital may not be the answer but starting a conversation with that hospital might very well save a life.
 

Tuesday, August 21, 2012

Patient Safety or Mystery Shopper?

Patient Safety Observer

I have been called a “mystery shopper” of hospitals. I don't think that's what I do.   I like to be called in to the hospital to visit a patient by the family or the patient themselves.  I usually get the call because the patient doesn't know who is in charge of their care, aren't getting their needs met or feel that the care they are receiving is substandard.   That call gives me a reason to go into the hospital and see some of the problems that may cause unsafe care to a patient.  I don’t make the trip if it can be handled over the phone, but sometimes I just can’t get someone in administration to help and the bedside staff are just too busy.  In that case, I will go to the hospital.
When walking through the halls I will observe things like a cluttered hallway, overflowing garbage pails and empty hand sanitizer holders.  I will see if medication carts are unattended and listen for staff who are loud and un-attentive.  I will even look to see if there are any patient safety brochures or posters.  If you have read past posts you know that I will watch how the cleaning crew washes the bathrooms and if they touch items in the room with soiled gloves.
I don’t do this to get people in trouble.  Goodness knows the staff work hard, but if there is a discomfort to me about being in this facility, someone, with the power to make changes needs to know about it. 
The problem is the response I get when I write.  Some places answer immediately and ask for help and input.  Some leave the impression that I was seeing things and many others (most) hospitals don’t respond at all.
The letter sent out explains that it is for informational purposes only.  There is no official report going out to any of the places we are to file a complaint like the Department of Health or The Joint Commission or the news .  I am not looking for a pretty atmosphere but I do look at patient’s safety. Accessible   information, courtesy and comfort will bring a patient back in the future.  Early intervention is also safety.  A patient who feels chest pains but won’t go back to the hospital because it was dirty, they felt the people were rude or they didn’t feel welcome is, in fact a patient safety problem and should be addressed.
Personally, I don’t need to know how things are changed, or even if they are.  I’m pretty confident I will be back again to see for myself.

Wednesday, August 1, 2012

Designated............

The DMM
I jokingly asked my friend at her birthday party if she was able to drive home.  She looked at me with her droopy eyes and sleepy smile and said “sure, but you can drive if you want”.  Together, we had already planned that I was her designated driver and prearranged for a mutual friend to drive her car home.  At the time we made these plans, she was not drinking and she was thinking straight.  I have no doubt that if the plans were not previously made she wouldn’t want to “bother” me and may have insisted on driving.

A few days later I visited someone on pain killers for a shoulder injury.  His wife commented on how medicated he was and how he was not thinking straight.  I wondered how he might be when the time was to stop taking the pain pills.  Would he even bother stopping?  It was a chronic condition he had, after all.

I thought it would be a good idea if before he went on the pain medication, he and his wife made a decision that not unlike a designated driver, she would start to have some control over his pain medication or planning the pain management.  If the pain pills are working, and he feels in control, even if he isn’t, it is understandable why someone wouldn’t want to take the chance of being in pain all over again, unless of course there is a Designated Medication Manager in the home. 

The conversation may not be pleasant but at least it will not be a surprise when the DMM starts the conversation about getting off or reducing the amount of the pain killers a patient is taking . 

Wednesday, July 11, 2012

Nothing By Mouth

Health Literacy 101

When I went to see the patient before her surgery she said "Don't get too close, I haven't brushed my teath."  I asked her why and she said "Because they said nothing by mouth".

Saturday, July 7, 2012

Working Together for the Sake of the Patient

Homeless Not Helpless
The call came in that a patient who is hospitalized was getting discharged too soon.  He was still very weak, unable to walk and had no place to go.  His Medicaid payments, the caller explained was about to run out and he had no family to help him.  The caller was contacted by a family member of the patient.  Not knowing how to help, the caller called PULSE of NY.

My first reaction was ‘How could they?’  But I know, after all these years that there are always two sides to hear. In this case it will be three.  When I called the patient, I found out his family wasn’t supportive, he didn’t know which doctor was in charge since there were numerous problems and he was homeless.  Hospitalized for many weeks, with many problems, he couldn’t focus on what the professionals were telling him. 
I decided to pay a visit and invited the nurse into the patient’s room to talk in front of him about his concerns.  I noticed there was no nurses name on the patient’s white board and was careful to say to the nurse’s aide, “there is no name, can you tell me who the nurse is?”  I then asked the nurse to call the social worker in to see us.  The social worker tried to get us to leave the patient’s room (the patient had an infection and we were “gowned up”) but I suggested that we stay and talk in front of him.
He was homeless but the hospital would pay his cab fare the social worker said, to get him to a friend, family or a shelter.  He hadn’t yet called all his friends who might help as he led me to believe and if he needs rehab, the social worker explained that there are shelters now set up to take homeless people who need special services.
The patient, obviously in need of company and companionship was hesitant to let me go but I was confident that there was a system in place to care for him and the hospital staff knows about it and is willing to help.

Sunday, June 17, 2012

Put Ice ON it

I Don't Get It
So I get my shot and I ask the doctor about any side effects.  She tells me it may swell and get red but ice and Motrin will help.  It is a bit uncomfortable so I begin sucking on ice cubes and tape a Motrin pill to the area that has swelled.  Just kidding!!!!!
But it’s really not a joke.  Many, many patients don’t get the doctor’s information correctly.  The way this was explained to me may have been confusing to someone who doesn’t know what to do with their directions, can’t read well or speak another language.  In all of our lives we often assume people know what we know.  That comes from using words that aren’t used by everyone or not encouraging someone to reflect back instructions or information.
As a patients advocate we need to be sure we are hearing exactly what the doctor or nurse is telling the patient to do.  Think of ways the information can be jumbled and assume the patient isn’t hearing it because it can get jumbled or they are distracted. 
If I were with an advocate when my doctor gave me instructions to just use ice and Motrin for pain, what are some of the things you could have said to help?
Doctor, can you explain exactly how much ice and how much Motrin?  Can you explain further what to do with the ice and Motrin?
Or
Doctor, how long should we use ice and Motrin or is there another medication we can use?
Ask the patient to explain what she will do.  “Ilene, what will you do with the ice and Motrin?” The response should be in front of the doctor so when I say I will suck on the ice, the doctor knows additional explanation is needed.
Thanks for reading!

Wednesday, June 13, 2012

One and Only

Safe Injections

I went to get a vaccination today and as the woman came into the room with a needle, wrapped in cellophane and a vial in her other hand,  I asked her, will you be reusing a syringe or the vial?
“This?” she asked as she held up a small glass container that looked about the size of a thimble.  “There is only one dose in here”.  She told me that some medications have more than one dose but in this case,  it is a single dose and then will be thrown out.  She asked me why I was asking.
Disposable Needle and Syringe
 “I just attended a program on safe injection and learned about one needle and one syringe.”  I told her I was curious if she ever heard of that.  She hadn’t, but showed me the whole needle and syringe gets thrown out after it’s used. She displayed the packaging  that she just opened to retrieve a new, unused needle and syringe.   I was grateful for this real time discussion on safe injections.  I could now say I practice what I preach.
I asked if she knew of others who may reuse the syringe or is it pretty standard to use disposables.  She said she didn’t know what others do but was confident that in this doctor's practice only disposable needles and syringes are used.  I felt reassured and just before she walked out the door she said “not only is it unsafe, but to not throw them away is gross”. And she was gone.  I barely felt her giving me the shot.
To learn more about the Safe Injection Campaign, read about it here:  One and Only