Saturday, September 29, 2018
If you are being examined by your doctor and something doesn’t seem “right” it may not be. The arrest and conviction of Michigan State University and USA Gymnastics team physician earlier this year, reminded me why I started talking to young people in high school and middle schools about being an involved and informed patient. In 2006 I was talking to a group of high schoolers about patient safety and speaking to their doctors when two sisters called their doctor “creepy.” That was a surprising term and it set off my antenna. I invited a gynecologist and then a pediatrician to talk to the children and their parents about appropriate exams. Even as adults we rarely have any reason to speak about what our exams are like and don’t know what similarities — or differences — are happening behind that closed door.
Over the years women have mentioned that they thought they might be getting what they felt were inappropriate exams. Often unsure whether they were imagining it or what to do about it, they never shared this secret until came along. I visited a police station and asked what the procedure would be if a woman claims to be assaulted or inappropriately touched by her doctor. The policeman behind the desk said that if it were a licensed physician, the accuser would need to go to the state department of health and licensing board to file a complaint.
Now fast forward ten years and there is the #Metoo Movement, the Olympic gymnasts’ case, the sex abuse and assaults by movie and television celebrities such as Bill Cosby and Politicians and high-ranking officials are making the news and priests are being accused and convicted of sex abuse from years ago to the present.
With all this happening around us, why couldn’t clinicians — for whom we are expected to undress and expose our bodies — also be part of this abuse and scandal? When we see a clinician, we are already feeling vulnerable because we may be hurting or injured, not feeling well, wanting to get better, and trusting that whatever is happening is appropriate. Especially because we willingly removed our clothing and subjected ourselves to an exam, how could a woman now “complain” about being touched inappropriately?
I am no stranger to the feeling of an “assault” by a doctor. I knew on two different occasions by two different doctors that what they were doing was not appropriate. When I left the exam room I knew I would never go back and that was the end of it. Or was it?
I have been impacted by this behavior and it helped me form my work today as a patient advocate. I understand why people come forward many years later. Although I don’t personally feel compelled to share the names of those who took advantage of me, I understand the rights of others to do so.
Although I would not share those doctors’ names, I would be devastated to see them put in a leadership position anywhere. I am confident that there are more “victims” out there who would rather just forget about their experiences as I did and as so many women do. We need to talk about what an exam is like and what to expect. We need to be unashamed to share an uncomfortable experience. We need to be able to encourage and support filing a complaint and getting or sending someone for support or counseling. Even if the people I have heard from don’t go back in time and relive what happened many years ago, we can use this as a platform to move forward and make it safer for other girls and women. By talking about this and forming a coalition of groups in support of those who have been assaulted by clinicians 30 or 40 years ago, we can make it safe for women today to say, “It happened to me last week” . . . . because we believe you.
Tuesday, July 31, 2018
Opioid Dependency and Addiction Could End with Better Communication
Would you be surprised if someone you know didn’t know what LGBT stood for? Lesbian, Gay, Bisexual, Transgender may be common terms used – when you are speaking about someone’s sexual orientation and / or gender. But what if that subject never came up for someone? I was surprised too recently to find out someone wasn’t sure what the term meant.
The word “mortality” rate also means the death rate. A cardiologist is a doctor who specializes in the heart and pulmonology is a specialty of the lungs.
New York Mayor Rudy Giuliani thought he was free from cancer when his doctor told him his tests came out positive – mixing up the word positive to mean a good thing.
When we label this information as health literacy we are putting the responsibility completely on the patient to understand what is being said to them. If they don’t know – that they don’t know – than how can someone possibly know what to ask?
Patients who are being discharged from the
hospital or ambulatory setting are given painmedication and told to take it as needed every XXX hours, up to XXX times a day (you can fill in the blanks). They leave with a medication that if they know they could become addicted or dependent, might choose not to take it at all and may decide on some other medication.
Now, think of all the ads and news about the opioid epidemic and I wonder how many people think that might not include them?
A commercial shows a man who tries his mother’s medication called Vicodin and becomes addicted. He uses the name of the medication in the commercial and now that he is addicted, he is shown slamming his arm in a door to break it so he can get more. The announcer uses the word opioid. “Opioid dependence can happen after just five days”. Why aren’t they using the name of the medication? “Opioid dependence such as Vicodin and other pain medications can happen after just five days”. Maybe we need to start putting these words together at discharge, at the pharmacy and in commercials to be sure that all people know that opioids is the type of medication – not the name of a medication.
Sunday, July 1, 2018
One Way to Test Your Advocacy Skills
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
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
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
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
"Happy” Patient Safety Awareness Week
It’s another Patient Safety Awareness Week March 11 - 17, 2018
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!
Tuesday, January 23, 2018
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 email@example.com
Sunday, January 7, 2018
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.