Tuesday, January 31, 2017
What does today’s politics have to do with being a patient advocate?
In our Family Centered Patient Advocacy Training which is based on being a Patient Safety Advocate for friends, family or becoming a professional, we stress the importance of being a good listener and being objective. This past election year and the past weeks have become a great test for these skills.
As I listen to the news, I hear opposing comments and ideas. Depending on what channel I watch there can be very strong opinions one way or another. One reporter or speaker won’t make me change my mind, won’t make me feel differently, but it gives me the skills to try to understand that what is being said is important to the people saying it and the people supporting them.
I am glad that there are people speaking out on their beliefs. That is important to our country. It has never been OK to call names and poke fun of people’s looks or behavior when that is not the focus of the issues. It loses credibility when I hear about the way a person dresses, walks or laughs and that becomes part of the discussion.
Being a patient’s advocate means being able to focus on facts and what really matters to the patient. Being objective which may mean putting your own feelings aside to listen and then allow a patient to make their own decisions, even if it’s not what you would want for yourself - or them.
If you are a friend or family member acting as an advocate for a loved one who wants to have surgery but you don't think its a good idea, it means listening carefully and trying to understand what they want and why they want it that way. If you can’t get past your own needs then you may not be the best advocate. Find an advocate that can be objective and right for the whole family.
As I watch what looks like a civil war starting on our own soil, I want to get some good out of this. It may be to just practice my listening.
Wednesday, January 4, 2017
A Letter to My Doctor
Today I sent the following letter to a doctor. I hope others are encouraged to share why they leave a practice before they go.
Dear Dr. XXXXXXXX
I am requesting that my medical records be forwarded to XXXXXXXXXXXXXXXXX
I will not be able to use your services any longer. Please allow me to explain why.
First, I should explain how I chose you as a physician — and possibly a surgeon — that I would use. I put a call out to friends and family for a recommendation. Your name came up. Even though our state physician profile lists you as having made five malpractice payments in the past six years, three payments above average, I did recognize that your membership of five prestigious organizations such as the American Medical Association, the Medical Society of State of NY and the Nassau County Medical Society might mean patient safety was important to you.
I thought it would be important to share with you why I am leaving and can’t recommend your practice.
1. I found it offensive and disturbing that my reason for seeing you was discussed at the front desk. I knew why other patients were there because it is asked when signing in, and written down where the next person can see; also, the receptionist confirmed aloud what my appointment was about. Although this is not a HIPAA violation it would be a breach of privacy were there someone present from my circle of friends or family with whom I didn’t want to share my business. Imagine if a gynecologist’s receptionist asked whether a patient was there for a pap test or a yeast infection, or to see if she were pregnant. These discussions belong inside your office.
2. Although your x-ray technician was very nice, he seemed rushed and impatient with other staff. He told your PA that he was waiting for me for a half hour. I was not even there for 10 minutes. He also did not describe what was happening to me, what he would do, or why he would do it. He said almost nothing to me. A brief explanation of what would be happening while he was working – thus taking no extra time — would have been helpful, especially if I were someone feeling scared or alone. It also would have made a great impact on my experience.
3. I don’t appreciate being called “Doll” after every sentence by a staff person who is half my age (or any staff person). If she couldn’t remember my name, there are safer ways of confirming she has the correct person.
4. An unknown, elderly woman in a wheelchair was wheeled into my room while I was waiting for you. I had to stop the staff person from bringing her in. He apologized and said he had the wrong room. This gives the impression that your office is in some disarray and there are on-going problems.
5. On my first visit with you, you were obviously very sick with a serious head cold and let me know that. I understand that it is not easy to take off from work, yet you never washed your hands and even after blowing your nose you went back onto the computer in your room without cleaning your hands. Then, you left the room touching the door knob.
Dr. XXX, this letter is not being sent as an official complaint to the Office of Professional Medical Conduct, but instead offers an opportunity to review practices that can be viewed as potential hazards to your reputation, your staff, and most importantly your patients. It is very difficult for me to write this letter but I think it is very important that these issues of respect, courtesy and safety are addressed.
Thank you for your time.
Ilene Corina, Patient Safety Advocate
American Medical Association
Medical Society of State of NY
Nassau County Medical Society
Friday, October 14, 2016
Table at the Fair
I set up a table at Senator Kemp Hannon’s Senior Health Fair to distribute literature to the people (mostly over 60) who might be interested in patient safety. PULSE of NY, now called Pulse Center for Patient Safety Education & Advocacy, has had a table there for many years and it has proven to be a wonderful networking event. We have always been grateful to Senator Hannon for including us in this lively community event.
For years it was a great opportunity for me to spend time with my parents who have been volunteers for 20 years, then just my mother, and now with them in Florida, it’s a chance to spend time with other Pulse volunteers as we meet the community.
Ideally, I suppose, we are supposed to be making the community aware of our services and how we can help. Instead each year it seems to be a bigger and better event for older folks to go trick or treating. Just before Halloween the tables are piled with give-aways like pens, back scratchers, hand sanitizers and yes, lots of candy. Some of the merchants even joke about who has the best candy and we find it fun to swap!
After all these years of setting up tables at fairs, it’s hard to imagine the best way to approach people about patient safety. Why isn’t the public more interested in becoming an involved patient? The people on either side of me who worked for an insurance company and another nonprofit each had personal stories of medical care that would fall under patient safety or medical injury. They got it - but had no plans to share their experience so others could learn from it. They suffered in silence. What is the shame?
If we say “medical error” is there automatic blame? I can assure you that when there is a medical injury, 100% of the time there is a patient involved but yet still patients are left out of the conversation. That has to change! Always looking for suggestions how.
Friday, September 9, 2016
Why is Being an Ally Important?
Why is being an ally important to the LGBT community or any community that needs a voice?
I remember when I did a program at a hospital about sensitivity of working with people who have various disabilities such as using a walker or in a wheelchair. During the open discussion someone in senior leadership said that they don’t have enough staff to work with people “like that. “They” take extra time and the rooms are not meant to accommodate their equipment.
If I were in a wheelchair, I’m confident that those words would never have been spoken. If you think that’s good, I disagree. They need to be spoken and discussed. If that VP carried her feelings out of the room and to her staff, it would be a ripple effect and the negative comments and feelings would reach a patient – somewhere. Now that this is on the table we were able to discuss it, find the appropriate words she can share with her staff (who may feel the same way) and then make accommodations and plan appropriately. The elephant in the room needs to come out for discussion and to learn what to do. Keeping this bottled up helps no one.
The same with people who are gay or lesbian or transgender. A bearded woman may make someone feel uncomfortable but isn’t it her right to grow a beard? In healthcare it does matter because when toileting or body parts that are different on a male or female. Should healthcare professionals ask men and women (who are presenting as one or the other) their last menstrual cycle, if they are pregnant or if they have had a prostate exam? I know of a transgender woman asked her last menstrual cycle in an emergency room and instead of coming “out” she gave a date.
When people have been frustrated over questions and mistakes in pronouns their whole life or people who may seem insensitive to needs, it is the ally who can step up and help with the questions and education.
Yes, I will go to the bathroom with you and gently tell someone to mind their own business if they comment while you get angry.
Yes, I will help you with your wheelchair and ask people to give you room in the hallway. I will help you with your English or help get you an interpreter. I understand that my friend doesn’t read well and I will help with the consent forms or admission packet. As an ally, there are many places we can step up and help. We need to be open to learning from those who want us, what they want from us and then do it.
To those who are living in the world that I don’t know or understand, I ask you to be patient and remember each person you meet does not know the lifetime of struggles you have had. We make mistakes and may seem inconsiderate because we don’t know. If you shut us out in your frustration, we will never understand each other.
Tuesday, August 23, 2016
Epi Vs Narcan
These past few weeks the high cost of Epinephrine (or EpiPens) has made the news. It’s not that new. In March a story came out in ModernHealthcare about the high cost of this life saving drug. Around the same time I was working with teens who sat at my dining room table and we talked about patient safety and being an Involved and Informed patient. A young man at 16 years old with nu allergies questioned why Narcan is free to the public and his EpiPen is so expensive.
We know that many more people will die from drug overdose than allergies but isn’t that the system once again using “measurement” to decide who lives and who dies? If I had serious allergies and in my financial situation I might be hoping that prayer could work just as well.
Then I realized that if the pharmaceutical companies make a lifesaving medication, people who die from overdosing can come back and buy more medications from the pharmaceutical companies – look who gets rich off this.
What we really need is to encourage Jiff and/or Skippy and/or Peter Pan to go into the business of making EpiPens so those people who are allergic to nuts can eat them.