Are Your Complaining?

Complaining?

We use the word “complain” sometimes and I wonder if its actually the best word to use.

When someone goes to the doctor “complaining” of a back pain or stomach ache, are they actually complaining?

One explanation from the dictionary is express dissatisfaction or annoyance about a state of affairs or an event.

To say someone is complaining, doesn't that makes them a complainer?  Now we have put a judgement on the person who is explaining a situation that has them concerned or upset.  If I tell someone that she has been complaining of a headache for a week, could that person say that I am calling her a complainer and become defensive or even angry?  Why not say that person has said she has had a headache for a week?

A woman called me recently to talk about her experience with her doctor and asked how to file a complaint.  I asked her what she hoped would happen.  She actually wanted a relationship with her doctor and was angry that her doctor treated her cold and distant.  The caller kept apologizing for complaining.  It seems the doctor moved her practice to another part of the state and the woman still wanted to see the same doctor.  Visiting years later, she was upset that the doctor treated her like a new patient.  “I was her patient for years” the woman told me and now she was being treated as if the doctor never knew her.

I told her about how I have written letters to doctors about my experiences with them from anything to - they didn’t wash their hands to something they said that was offensive or even when I appreciate them.  Writing letters is helpful if she was willing to take the same amount of time to write a complaint as she was to write a letter explaining what happened, she may actual save the relationship and continue seeing the same doctor.  I suggested that she doesn’t label her experience or concerns a "complaint" and explain what happened using the facts, as she experienced them. 

Stay focused on the facts, explain how it makes you feel, and don’t be so quick to label something negative that someone else may see as a positive.

Remember to Talk to the Patient

Let the Patient Talk

I was recently speaking to a healthcare professional from a hospital about patient safety.  He explained that the biggest problem he sees is at the discharge process.  I understand that to be true for many reasons.  People leaving the hospital are still drowsy following surgery and are given instructions they may not follow or may not understand.  After all, a person can’t drive so why should they be able to understand instructions?  There is usually a lot of information and it’s read quickly to the patient.  Then patients are given a copy of pages to read without anyone knowing if they can understand what they are reading.

A friend or family member is there to take the patient home, but does that mean they understand better, or just that they have a valid driver’s license to drive the patient home? 

What are their “qualifications” to get the person home safely with all the needed information?

I explained that’s why we do advocacy training to help families prepare - either as the patient or support person on what is to be expected throughout a hospitalization.  I asked him if he includes the family in the discharge.  He said “that would violate HIPAA”. 

What do you think?

I explained that HIPAA is not meant to keep important information from people who need it to help the patient.  PRIVACY does.  We all need to respect a patient’s privacy which is very different than a federal law.  He said that when he talks to the family the patient may get angry because the patient doesn’t want the family knowing too much.  DING Again.

I asked him why is he, the healthcare professional talking to the patient’s family?  Why can’t he, the healthcare professional, be the support while the patient tells their own family?  This way, the healthcare professional, nurse, doctor or discharge planner can hear what the patient knows and makes sure they are explaining it correctly and only what is needed is shared, and he has not left the patient out.

What year are we living in that the clinician still doesn’t think to talk to the patient?

Registration now open for Family Centered Patient Advocacy Training!

http://www.pulsecenterforpatientsafety.org/family-centered-patient-advocacy.html 

Why I Won't Protest for Patient Safety

Patient Safety Protests?

As Patient Safety Awareness Week closes for another year, I want to share some insight.  This week was also the one-month anniversary of the tragic Florida shootings that led to the death of 17 people.  High school students around the country walked out of classes to remember the dead but also protest for better gun control laws.  I’m not going to share my opinion about gun control.  That’s not what I do. 

I have seen patient safety activists / advocates like myself bring up the subject again about demonstrating and marching for patient safety and patients right.  That’s what I want to address.

I am all for demonstrations. As a matter of fact, in the late 90’s I organized some and led some.  I did so with a common theme that we all wanted information about our doctor’s backgrounds made public.  Legislation was pending that would make it a law for doctor’s information to be made public.  What school they went to, the year they became licensed, their practice information and their discipline record.  We moved forward and the legislation was finally passed in October 2000 but there was still concern that a doctor can have 10 lawsuits pending and discipline action pending and until it was “proven” we still need to be vigilant in our choosing our doctors.  Physician profiles was a tool, it was not a guarantee and we, as patients still needed and need to be cautious.

In the late 90’s we had a specific goal.  Educate the public on the lack of information available about your doctor and call or write your legislator to pass this legislation.  For me, it was never about a “good” or “bad” doctor.  It was about my right to have information to make an educated choice – as educated as possible.

Now, come back to modern day and the interest in protesting or marching.  What would the march be about? Patients - Rights?  NY State has 22 patient’s rights.  How many patients know what they are?  If you don’t, look it up on the Internet and make sure you know what they are.

Today there are hundreds and maybe thousands of people like myself who wish to demonstrate – make themselves heard, make their pain known about the loss of a loved one.  But what is the final outcome?  Some people believe hand washing and preventing infections is top priority.  What about our right to see medical records, medication safety or even disclosing medical errors.  Some people want accountability – does that mean punishment for one human being accidentally harming another?  What about the car accident where my insurance compensates someone I might injure?  Could I / you be the one who accidentally causes harm to another?

Do you really want to see a nurse who has worked hard her whole adult life to save lives be punished for a mistake?   The pharmacists who mixes up medication or the doctor who tried to get the diagnosis correct but missed the mark?

Try to find a lawyer to take a case of the 90 - year old who was misdiagnosed or the baby with a serious birth defect given a lethal dose of medication and dies.    We know how hard it is to find lawyers.  Maybe we should protest that lawyers should take all cases?  An elderly patient that doesn’t have her call bell answered and gets up and falls - or stays in a urine-soaked bed that leaves horrid infection?

We, as a society need to stop thinking the people who work in health care taking all the responsibility. We as a society of patients, family members and friends MUST start taking more responsibility by speaking up, writing letters to hospital leadership of what you see and making sure we are all part of the solution.

Patient Safety Awareness Week 2018; Include the Patient & Family Ideas

"Happy” Patient Safety Awareness Week

It’s another Patient Safety Awareness Week March 11 - 17, 2018

and though I use the word “happy” loosely, I am happy that we are talking about patient safety. – well at least some of us are.  We have a long way to go and I will share with you my humble opinion on what that should, could or would look like if the patient and their family had a voice. I will even tell you how we should get there.

1.    Patient safety MUST be brought into middle and high schools

Children must be taught what they should be talking to their doctor about and what an appropriate exam is.  If the young women from the Olympic gymnastics team knew what to expect at an exam, they may have been more empowered to tell someone that they were being molested.

Make Patient Involvement part of the health curriculum

2.    There must be patient support or facilitated discussions for people who use the healthcare system.  Specifically, for underserved and minority groups.  African American women are dying from complications at child birth at alarming rates.  People who are transgender often avoid seeking care because of uneducated healthcare professionals and young mothers living in shelters don’t always understand how to prepare for their visit or their child’s medical appointment or know what an emergency might look like.

The ASK for Your Life Campaign is one example of how community workshops can help empower people

3.    Classes for family advocates can be offered in adult education, churches and community groups to be sure the family can understand patient safety and be helpful to their loved ones needs.  Navigating the healthcare system is difficult during a crisis whether it’s about safety, billing or discharge, without proper preparation the burden falls on medical staff who are often overworked and unaware of a patient or their family’s full needs.

Pulse Family Centered Patient Advocacy Training covers much of the items addressed.

4.    Policies need to be developed that during patient discharge at a hospital, staff must explain pain medication addiction and dependency.  As a bedside advocate for the past 10 years with over 1,000 hours at the bedside I have never heard or seen the discussion about pain medication and the relationship to addiction and dependency (including in March 2018)

While states are focused on rehab and pharmacy / physician accountability, the discussion needs to start before the prescription is given.  This can also be done with the Pulse Dedicated Medication Manager (DMM)

5.    Although there is health literacy and communication training for healthcare professionals, there should be for the public.  We keep hearing that there is a problem with Opioids but do people (young or old) know what they are?  If a patient is sent home with Vicodin, Codeine or Oxycodone, they may not see the risk.  Do patients understand what an MRI is or the difference between a nursing home, rehab or assisted living?

A person to be hospitalized might learn ahead through nonprofit support organizations how to explain in their own words what they understand and don’t.  If  they think they know what the doctor is talking about, they may not understand the importance of repeating it back

This is my short list.  If you agree and want to see these changes made please share this message with others.  Pulse CPSEA has been doing all the above for years.  I hope we can spread this work by inviting nonprofit organizations to the 2018 Patient SafetyEducation Symposium for an afternoon of learning on May 4, 2018.  Participants will then be invited to apply for a grant to help their organization educate members or the community they serve!

Kids and Medical Abuse

Are Kids Being Set Up for Medical Abuse?

By high school age, children should be prepared to visit their doctor alone.  They need to share information that they may not want their parents or another adult to hear.  This should be a relationship of trust where a young person can be treated with respect and dignity, can ask hard questions and disclose the most difficult concerns:  depression, sex, drugs etc.

Yet we live in a society where we too often hear “No medical professional wakes up in the morning wanting to harm their patients.” Obviously with the recent story of Dr. Larry Nassar molesting as many as 125 young girls, it is not true that we can always trust our clinician. 

Child abuse by medical professionals is not common, thank goodness, but it does happen. That’s just one reason why Pulse Center for Patient Safety Education & Advocacy goes into high schools and encourages young people to open up about their experiences and talk with each other about their patient/clinician relationships. 

“I had an early encounter with t­wo sisters who called their doctor ‘creepy’ during a teen discussion about medical care and preparing to see their doctor,” explains Ilene Corina, a patient safety advocate and educator for Pulse CPSEA.  “This experience disclosed problems in the relationship and I started teaching patient safety to young people with the support and guidance of qualified medical professionals.” 

Other topics Pulse CPSEA addresses with classes as early as middle school are preparing for the doctor’s visit with questions; appropriately and fully explaining symptoms for the best diagnosis; and medication safety. The presentation is fun and interactive and leaves classes recognizing the importance of becoming “Informed and Involved” patients.

To learn more about Pulse CPSEA and its school programs contact Ilene Corina (516) 579-4711 or e-mail icorina@pulsecenterforpatientsafety.org

Related Stories:

http://abcnews.go.com/US/molestation-victims-coach-lashes-olympic-doctor-nassar-court/story?id=52404442  

http://www.norwalkreflector.com/Health-Care/2016/12/29/Doctor-accused-of-violently-molesting-raping-1-200-children-recorded-abuse

http://www.nytimes.com/2008/08/06/us/06pediatrician.html

So Far Away

Living Far Away 

The woman on the phone sounded very upset.  She said I was referred to her by a person I would rather not name but it was a prominent political figure’s staff member.  I assumed now that this would not be easy because if it were, the other person would have handled it and not referred this person to me. 

The woman was calling about the care her mother was receiving in a local hospital.  I let her speak for about 10 minutes and when she took a breath, I said “you must be very angry over the care your mother is receiving.”  “Of course I am” she continued for another 5 minutes. 

Her elderly mother was alone in New York while the daughter on the phone was sick and also elderly in a state far away. I couldn’t blame her for the anger and frustration she must be feeling.  She explained that her mother has an infection and they refused giving her antibiotics.  She explained how much pain her mother is in and how she was not being cared for.  Over a period of three days of on-going phone calls which consisted of her telling me about her lack of finances her being black and nurses who don’t like “black people” her mother being alone and so far away, the long list of names of administrators, doctors and nurses she spoke to already and her mother’s dementia amongst other subjects, I finally had to ask “How can I help?”  She snapped back with “I don’t know, I was told to call you because this is what you do”.

I decided to go visit her mother.  I was well prepared for a serious concern of what I might find and my mind went in circles of how  I would handle it.  Upon entering her mother’s room, I noticed a small woman with her hair done in braids and a clean nightgown and clean bedding.  I checked her armband to be sure I had the correct person and asked her, her name.  The woman in the bed just stared at me.  I told her I was there to see how she was and her daughter was concerned.  She smiled.

The nurses aid came in and I introduced myself as a friend of her daughters and was just checking in.  I asked who does her hair in a braid so lovely on top of her head.  The nurses aid said they all take turns caring for her.  They seemed to genuinely like this patient.  The nurses aid, a black woman said she just ate. Yet there was no food on her face, her covers and she was clean. I asked about her infection and was told it is better.  I asked about antibiotics and was told she finished them.  The woman in the bed still wouldn’t talk so I scrubbed down a chair for myself and asked if I can sit with her.  She said “of course” with a smile.  We both laughed at the TV show she watched and at each commercial we talked a bit.  She said she was not in pain but didn’t know the plans for her future.

As a patient “safety” advocate my role is to be sure the patient isn’t in danger.  Of course I can’t guarantee the moment I left she wouldn’t be given the wrong medication or she wouldn’t try to get up and fall.  I did get to look for things like, was the nurse easily accessible and was the aid attentive.  Was the patient in clean sheets, well kept and was there antibacterial gel available and were the dispensers full. Did they wash before approaching the patient, were the floors clean and did they talk to the patient – and the patient next to her.  Most importantly, if this was my family member, would I be OK leaving her there.  If the answer is “yes” I can leave.  I left.

I called the daughter to report to her what I found.  I explained to the daughter that she is speaking so loud it’s hard to talk with her (she was yelling). 

Still the daughter was not happy with my report so we were able to move the conversation to the guilt she is feeling being so far away.

Medical Conferences

ANOTHER MEDICAL CONFERENCE

By Ilene Corina, Patient Safety Advocate

December 2017

Another medical conference on the topic of patient safety has just passed. There have been numerous conferences over the years, and I have attended many of them.  I usually leave inspired, excited and often overwhelmed by the upbeat and positive work being done in patient safety.

The usual program for such conferences has patient safety leaders talking about the wonderful work they are doing.  One or more patients, who may or may not be medical professionals, talk about the tragedy that brought them there that day. There will be presentations about the heartbreaking journeys of the family members of patients who died, patients who weren’t treated well, and many presentations offering insights for the healthcare professionals on how improvements can be made. Then there may be awards for the great work being done to save lives. 

While all this is happening, in a state far, far away, there is another side to this. A hospitalized patient is getting an incorrect diagnosis or the wrong medication, or is fighting a hospital-acquired infection. Have the healthcare professionals attending the conference remembered to tell their patient and those patients’ loved ones what they too should know about keeping safe?

I have said for years that patient safety should be seen as like wearing a seat belt. It is up to the driver (the medical team) to do the right thing, but if something goes wrong we (the patients) still should be wearing a seatbelt. Not because we are predicting something will go wrong, but because it might. Patients who know nothing about patient safety have no “seatbelt” are completely unprepared for the risks and unwanted outcomes.

These conferences need to be attended by representatives of business and industry — both management and rank-and-file employees — that is, the people who actually use the healthcare system. 

UPS has 434,000 employees

General Electric has more than 300,000 employees

Bank of America has 208,000 employees

Disney World has 62,000 employees

In 2006 a survey found that 14.5% of employees took Family Medical Leave in 2004. Of those, 35 percent took it more than once during the year. How many of these days off could have been avoided if there were fewer complications in healthcare?

Since between 200,000 and 400,000 people die each year from preventable medical errors, at a cost of as much as $19.5 billion[1], shouldn’t the corporate leaders of UPS, GE, Bank of America, Disney World and other major employers be sending their staff to patient safety conferences?

At what point does someone in healthcare say: “We’ve had enough training but it’s still not perfect. So now we must include patients, their families and their employers in this conversation.

Contact:  Ilene Corina (516) 579-4711 or icorina@pulsecenterforpatientsafety.org

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[1] https://www.ncbi.nlm.nih.gov/pubmed/23155743

Twenty Years of Choosing a Doctor

What a difference 20 years can make… well of course!

Twenty years ago I was speaking to the public at community meetings for older adults, civic organizations, religious communities and as I met people in the park, the train station and the malls.  I was asking them “what do you know about your doctor?” When they didn’t have an answer I would ask “what do you like about your doctor?”  I was asking this to people to introduce them to the need for physician profiles or a place to look up information about their doctor.  Not because they would be judging their doctor but so they can have some knowledge about this person they are hiring to make life or death decisions with them - or for them or for the person they love.

So, what has changed?  Twenty years later I still start my presentation about patient safety or patient centered care in the similar way and also ask the question: “who here likes their doctor?”  When the hands go up, I ask “Why?”  Twenty years ago people responded that the doctor was nice, had good office hours, took their insurance or they have been going to them for years.

The last few years I’ve noticed a shift.  Now I hear comments like; He explains things to me, I understand what he/she is saying and he/she spends time with me or he calls me back.  Even when in a high school, youth are interested in a doctor who talks to them and not their parent and when a doctor knows their name.

People are looking up information on their physician and using that as a guide to who they may use.  With so many specialists now it’s hard to know which clinician will be in charge of your care.  It looks like people are getting more sophisticated in deciding what they want and expect from their clinician.  So what is the point of asking if someone likes their doctor?  Because when I ask who doesn’t like their doctor and the hands go up, I remind them that the referrals are right there in the room.

Holiday Visit in the Hospital

Hospital Visit During the Holidays

It’s holiday time so what is the best thing you can bring to someone if you visit them in the hospital?  Candy canes!  Not for the patient, but for the nurses, nurse’s aides and doctors who care for them.  Don’t bring them to the nurse’s station so they can get mixed in with all the other candy, cookies and gifts and no one knows who it came from, leave it in the patient’s room.  This way, staff will be coming in to check on the patient, and grab a candy cane.

I have been suggesting this for years.  Those who have taken my patient advocacy training know this.  As a patient advocate we need to be sure we are building bridges for the patient and staff.  Recently I asked a doctor to wash his hands and when he suggested he already did (I did not see him do it) I offered him a Twizzler if he did.  He took the wrapped candy and washed.  It broke the tension and I got what I need for the patient. 

Chocolates are also popular when nurses come in to read the box cover to see what they will get, they spend extra time with the patient at their bedside and it makes for more pleasant small talk.  Many years ago, I left a bouquet of lollipops at the patient’s bedside and when I returned all the nurses were walking around with lollipops in their mouth.

An assortment is always best.  Chocolate and Twizzlers or lollipops.  Don’t forget to offer it to the patient in the next bed or their guests because there may be a parade of staff coming in and talking about the new treat.      If someone is diabetic, don’t pursue it.

Usually staff will be hesitant from taking the “patient’s candy” but insist it’s for them.  Encourage them to take one and tell the others it's there.  They will be back.  I guarantee it!  See what else Pulse Center for Patient Safety Education & Advocacy  recommends bringing to the hospital: The Patient Assistant / Advocate Guide      

Addiction and Dependency Could Stop-Get Involved Before the Prescription is Written

The Opioid Epidemic Can Stop Before the Medication Reaches the Patient

Yesterday I went to a program on Long Island hosted by the Long Island Association about the opioid crisis on Long Island.  While there are symposiums that address how to stop the problems of overdoses and drug addiction with education at the schools and in the community, there was nothing said about the public learning the dangers of pain medication the moment a pain medication prescription is written.

The I-STOP program which monitors prescription drugs and arresting clinicians who are over-prescribing doesn't help the person or the family of the person who died.  Punishing for what can be honest mistakes may deter the next clinician from writing a prescription, what about those people who need the medication - it doesn't help the person who has overdosed or is already addicted.

Medication errors, over-prescribing, addiction or dependency can be best avoided if the patient is informed to have someone with them following a medical procedure, surgery or injury before they are given the prescription. 

The warning is not offered at the hospital discharge or before.  Warnings to have a support person are not given when the prescription is given or picked up at the pharmacy.  Written material does no good if a person cant read, doesn't understand the information or the warnings.  As patient advocate is becoming a common term, such as bring an advocate with you to the doctor or hospital, we need to give them the tools of what are they there for.  Monitoring a friend or family members medication is a way to help avoid improper use of medication.

The father of a son who died from an overdoes shared the heartbreaking story of his son's addiction after a phyocal injury. Why aren't we talking about the reason so many people become addicted "after the injury".  Maybe because family gets involved only after the addiction or dependency has already started. www.pulsecenterforpatientsafety.org