Sunday, July 1, 2018

Test Your Advocacy Skills


One Way to Test Your Advocacy Skills


Could you be a “good” patient advocate? Here is one way to find out.

In today's society of mixed opinions, what is your reaction? Are you angry at the people who don’t agree with you? Do you find yourself calling people who don’t agree with you names like idiots or stupid; quietly or aloud?


Have you blocked your friends from Facebook or no longer accept calls or invitations from people who don’t agree with you? Are you spending time proving you are right and they are wrong? Maybe you find something on the internet and then tell people who oppose your views that they are wrong.

Or, do you find yourself listening to people, radio and television shows that don’t share your belief or point of view? Maybe you engage people in conversation so you can hear what they have to say knowing it may be different than your point of view. Have you researched information that someone told you, to see if it is true and then keep this to yourself or share it once and move on?

Do you find yourself interested in what people who have different beliefs have to say?

If you can listen to others and know it may not agree with your values or beliefs, and not get angry or frustrated, you probably would be a good patient advocate.

You may be saying to yourself that when a patient makes a decision it doesn’t affect society, lives, the country or_____ you fill in the blank. That’s true. But by listening to what someone is saying, it helps to build a strategy and move forward not by emotion but instead by facts and clearly thinking. Who will listen when we speak out of anger and with words we don’t know are true? To help in a dialogue we need to be better listeners and maybe not try to change opinions unless we are armed with good facts and willing to listen to how others hear what we have to say.

This could be helpful whether we are speaking about politics or someone’s healthcare.

If the person you are caring for does not want a treatment or procedure you think is important, you can tell them over and over why it’s important through your experience or material you have read. If you don’t listen to why they say what they say or why they feel the way they do, you will continue talking to someone who is not listening and has learned to close you out.

Saturday, June 9, 2018

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.

Monday, March 26, 2018

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”. 


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!


Thursday, March 15, 2018

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.

Saturday, March 10, 2018

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

"Happy” Patient Safety Awareness Week


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!