The Advocate's Training

The Advocate's Role in Communication

I just read on a website that is offering patient advocate training that the participant will learn, among other things for the fee of $795.00 to “Interpret medical jargon, diagnosis and treatment to the patient and family when appropriate”.

In the advocacy training offered by PULSE of NY we dispute the role of the advocate to ‘interpret” medical information to the patient.  If the patient or family does not understand the information being given, the advocate’s role is to make sure the patient does – by having the doctor or other medical professional repeat it, or rephrase the information.

Another area, that this advocate will be trained in for this fee is “Explain various diagnostic tests, treatments and medications”.  This too is dangerous water for an advocate to be wading in. 

A patient’s advocate should not be interpreting or translating for the healthcare provider, they should be the bridge connecting the relationship and strengthening it.  Another professional, such as an advocate willing to take over for the doctor or medical professional can become complicated and there is danger of giving or getting misinformation.  An advocate should never tell the patient “I will explain it to you”.  They should absolutely be encouraging the medical professional to help the patient understand.    In the healthcare system there are people who have roles to help the patient and family understand the appropriate services, and their rights.  The advocate’s role should be to make sure they are doing their job.  Not doing their job for them.

The pharmacist, nurse or physician can answer questions about medication, the advocate should not.  Making sure the patient is getting the proper and agreed upon medication is the role of the advocate.  The advocate should not be getting information without the patient’s approval, nor can they speak for the patient if there is not written consent.  Too often a nurse at the bedside will assume that the advocate knows the patients history.  They may not and the advocate needs to know early on what their role will be to protect themselves and the patient what their role is not.

To sign up for the PULSE Patient Safety Advocate course go to PULSE of NY Family Centered Patient Advocacy Training.

Making a Choice

Choosing a Hospital or Doctor

A common question I hear is “How do I choose the best doctor”?  It’s not an easy question to answer.  Choosing a doctor or hospital is a very personal choice.  It may be important for you to be a close distance from your doctor because travel is an issue or that you go very often to see your doctor.  Some people want someone they can talk to, feel listened to and are just generally very comfortable with.   You may want someone who specializes in certain areas or choose a surgeon who has done the procedure numerous times (but how were the outcomes?)  I will hear that the “best” doctor is actually a really nice person – since we really don’t know what makes someone the best at anything.  It is, after all a personal choice. 

By checking websites such as www.nydoctorprofile.com you can learn if the doctor has done any outstanding work in their field, where they went to school and how long they are practicing.  You can learn if the doctor has been disciplined by the state or about their malpractice settlements, if there were over three in ten years.  But there is no way of knowing if there are pending lawsuits or disciplinary charges.

I was recently asked how someone would choose between two hospitals.  The caller had a hospital he was ready to use for surgery.  He said someone questioned his choice.  I would not give my opinion since even at the “best” hospitals, things can go wrong.  A patient can get an infection, the wrong surgery can be performed or the patient may receive the wrong medication at any hospital. 

What actually needs to be addressed is what we can do, as patients and as family members, to help ensure the best outcome.

This link to a Quick Guide to Patient Advocacy explains the simplest steps family or friends of the patient can do such as listening carefully, writing down questions in advance and insisting the doctor answers so you can understand.  Don’t allow a doctor to rush you and share accurate information freely.  Be honest about lifestyle and medications, vitamins and supplements.  Understanding the policy’s and safety practices when entering the hospital, and knowing that they are being followed, is an important way to help ensure safe care.

Religion in the Way

Patient Safety and Religion??

It hit me like a ton of bricks, right out of left field. I opened an e-mail early in the morning to find that a woman who has been working for us for a few weeks quit when she learned of PULSE’s work with the transgender community. Her letter read “I must say that while I support the overall mission of PULSE of NY, as I a born again Christian, I do not support homosexuality and transgender issues. To do so now by continuing to work on various projects with the organization, would be to go against the principles of my Christian faith.”

I was curious, and asked what her Christian faith had to do with the human right to patient’s safety, which is, after all what PULSE is about. She explained in thoughtful detail “By working to push for equal rights in healthcare without taking a stand against it, I am very well giving a green light to something I don't agree with”. Her letter was kind and gentle, but still very confusing to me. In our exchange I told her I don’t agree with drug abuse and abusers but will fight for their right to safe, quality care.

 In her note she replied “I also see this as a means of supporting the alternative lifestyle in general. I will offer assistance to anyone and help them receive support and guidance who is repentant and wants to change, but I am against supporting the practice to continue on with that behavior.”

 I was sad to lose her and then felt anger that people hide their prejudice behind religion. I felt the passion for the work I (we) do in patient safety is not as important as …..the bible? This wouldn’t have become a religious discussion. I know my beliefs and wouldn’t dare discuss them with people I don’t know but this was deeper than religion. What if a nurse or doctor, resident about to do surgery or a paramedic about to save a person’s life feels this way? Would saving them or healing them, go against their “Christian faith”? Would treating a homosexual or transgender patient in the hospital be giving them the “green light” to continue “that behavior”?

 I was an advocate for a transgender man having a hysterectomy some years ago in a Catholic hospital. Though the staff at this facility obviously lacked sensitivity training and some common sense, most of the people there were kind and gentle. They may not have even been Christian workers. But what if I wasn’t there. Could it have been different? Will I always wonder now if people bring their prejudice to work?

 I expect that medical professionals are caring and take an oath to help and heal but it has put a fear in me that we cannot assume everyone thinks that way and this is another reason to be sure everyone has an advocate with them in the hospital.

Save The Company Time and Money

Family Medical Leave and Patient Safety

Betty needs to take a few days a month off from work to take her husband of 30 years to doctor’s appointments and for procedures following his stroke earlier this year.  Under the Family Medical Leave Act she is entitled to time away from work.   

Supportive of Betty, her boss gives her the time, no questions asked, but the company she works for  suffers when Betty is away.  What exactly is Betty doing for her husband when she takes him to the hospital for tests and procedures?  When I asked her, she says she drives him to the appointments and asks the doctor questions.

What Betty or her the supervisor at her job don’t realize, is that there are many things she can do to help ensure that her husband receives the best care possible and help speed up her time back to work – ultimately saving her from using sick time or losing pay and save her company money.

The Family Medical Leave Act (FMLA) entitles family members to take up to 12 weeks off from work to care for a sick family member.  But the family is not given the skills that can actually help produce better results speeding up recovery time and shorten lost work days.  Very often they are just the driver for the patient or what I call, the coat holder, doing nothing more than holding the coat for the patient, maybe ask a few questions, or write some notes.

If Betty took a brief training course in Family Centered Patient Advocacy, she would have some of the skills to make sure everyone who touched her husband washed their hands, cutting down the risk of infection.  She would learn to carry antibacterial wipes to clean door knobs and anything her husband, or others touched that may carry germs.

She would be confident to take all her husband’s medication, vitamins and herbs to the doctor or pharmacist for review to check for hidden side effects or interactions.

Betty may learn to ask about support groups for stroke patients who would help her, and him through the maze of paperwork increasing her chances to get back to work faster.

She would feel empowered to ask the doctor to repeat himself if she didn’t understand instructions avoiding a missed appointment, missed dose of medication or the improper use of equipment.

Betty would know to look for risks of falls so her husband would be safe from injury at home and in the hospital.  If he were to fall it could easily cause a delay in her return to work.  

Betty would learn to take notes when the doctor is speaking and ask the doctor to come back so they can think of more questions before they leave, possibly avoiding another day of missed work to visit the doctor or make phone calls for corrected information.

She would learn to ask for forms before she has to sign them so she can read them.

And finally, Betty would encourage a friend, family member, someone from her church, synagogue or a neighbor who doesn’t work to take the advocacy training too so Betty can go back to work and not be afraid that no one else could care for him.

Wouldn’t that be wonderful for her company?

Byron Garcia and Michael Bloomberg

Who is Byron Garcia and why is he important?

Byron Garcia is best known for his leadership of 1,500 prisoners dancing to Michael Jackson’s “Thriller”  following the death of Michael Jackson, prisoners wanted to pay tribute and practiced for many long hours stopping only when it rained, or to eat according to a CBS News report.

Garcia claims prisoners told him 'You have put my mind off revenge, foolishness, or thinking how to escape from jail, or joining a gang'," he said.

Byron Garcia, a businessman became the warden of the prison when his sister became governor and offered him the job.  With no experience with the prison system, Garcia transformed the prisoners from angry murderers, rapists and drug pushers to dancers who enjoyed entertaining and paying tribute to Michael Jackson through dance and rhythm teaching them cooperation and control.

Mayor Michael Bloomberg was a businessman until 2002 when he became New York Cities 108^th Mayor.

In September 2010, New York City claimed to be the safest large city in America

Under Bloomberg’s direction New York City is leading the nation in job growth.

So, what does this have to do with patient safety?  Imagine if patients ran the hospitals?  We may not know the business, but we may be the best at running the hospital.  Garcia knew people and he knew what they would be willing to do to.  He knew what they needed.  A tribute to Michael Jackson.

Mayor Michael Bloomberg was not a “politician” but a businessman and turned the city around.  Imagine if I were given a year to work with a hospital and improve patient care?  I know I could turn it around and make it safe.  Not because I know every detail about patient safety standards and policies but because I know people, how to make them strong and want practice safe, quality care.

I’m up for the challenge, anyone willing?

Health Information Technology

HIT

A phone call and e-mail invitation last week brought me to Philadelphia to be part of a small discussion group talking about health information technology (HIT) this week. This group was brought together by the US Department of Health and Human Services to explore the consumer’s perspective of healthcare technology.

Ironically, this has come at the same time a local RHIO or Regional Health Information Organization is focusing on learning the patient’s perspective through research trials. Over the years I have learned that Health Information Technology, opportunities to use the internet to correspond with your doctor’s office or share information between hospitals and doctor’s offices is actually potential life-saving technology.

It occurred to me that in my own son’s case so many years ago, as he was bleeding from a tonsillectomy and I brought him to 4 different doctors on 5 different occasions during that week to be examined, if they each knew I did that, they may have taken my concerns more seriously. Not knowing at that time that I went from doctor to doctor may have actually made them think they were the first visit. Not stressing that I made numerous visits with continued bleeding may have made them not aware of how much he was actually bleeding sending us home with the comforting words “don’t worry, he will be fine” each time.

Could health information technology saved my son’s life? That’s a question that will never be answered but knowing the full history of a patient is important to each doctor’s decisions of care and presently they are trusting us, the patient and family to share information appropriately and fully.

Hot Coffee

Hot Coffee; The Story of a Family's Fight Through Our Civil Justice

A young mom says to me “I could have sued my doctor, but my son turned out fine”.  I asked her why she would sue her doctor as we watched her son dancing to the music.  “Because they made so many mistakes”, she said.

I found myself explaining to her that a lawyer would probably not take the case if there was no pain and suffering, no loss of life and not even an injury.  I tried to tell her.  We don’t sue people because we don’t like them.  There isn’t a “winnings” or “jackpot” like the media likes to make it seem. That’s all for the media, it’s not real life.

I spoke with the daughter and son-in-

law of  Stella Liebeck who spilled

hotcoffee on herself and sued

McDonalds

I was telling her about “Hot Coffee” a movie that finally shares with the public the truth about the McDonalds hot coffee that spilled into the lap of the elderly woman many years ago.  Most people think she spilled her coffee and because of inconvenience, sued McDonalds for a large sum of money. 

That’s not the way it happened.  I saw the movie twice and knew the story because I followed it years ago when I started patient safety.  People make comments about lawsuits without knowing the facts. People just like to comment not thinking how hurtful or inaccurate their comments might be.

I saw the movie the first night at the premier in New York City.  I got to speak to the family of the woman who spilled the coffee.  “I’m a scientist, an educated man with a good paying job” the son-in-law told me.  “This was not about money”.  I believed him.  The next 90 minutes was a riveting movie about America’s civil justice system like you just don’t know it.   

Filming Surgery

Massachusetts bill would give patients the right to film surgery


Hospital officials say the measure would increase liability costs and present challenges to infection control. Physicians question the logistics of videographers in the OR.

http://www.ama-assn.org/amednews/2011/06/27/prsb0627.htm

I’m not sure I would support having my surgery filmed. If others want it on tape, so be it. I suppose the law is a good thing. But to have a video camera in the room, I would be afraid would be a terrible distraction. If I chose my doctor to do the surgery for all the right reasons, I’m not sure filming their behavior would be appropriate. And, for what reason? Assuming it would be for a lawsuit, the video would have to prove that there was malpractice. If they strayed away from policy and standards, was there damage done because of it? Infections surely can’t be videotaped and an item left inside doesn’t need a video. With the surgery itself be videotaped so the viewer(s) can see the accidental cut? So, now that it’s on video, does the patient heal faster? Or, will he doctor say it was because he/ she was distracted by the video?


I am in support of the legislation; I am just pretty sure I wouldn’t use it.

When they Don't Want to Hear Your Opinion

The Advocates Role

There are many different kinds of patient advocates. There are those who will keep a patient comfortable. There are those who will review medical records and help with billing, or help with placement and rides to and from appointments and there are those, like myself who are patient safety advocates and concentrate on the patient’s safety. It is often difficult to try to explain to the general public the difference.


I find much of my work is on the phone. I do go to the patient’s bedside to meet with the family on occasion, but when it’s not absolutely necessary I can just get in the way.

A family recently asked me to visit them, and their parent who was being treated at a Long Island hospital. I knew there was tension between one adult child and the attending physician. I interviewed the nurse before meeting with the family and she told me about some of the family heartache and confusion. I knew I would be working on communication issues mostly. The nurse asked me what my role was and what was I going to do.

I told her “I am going to repeat everything that you and the doctor say - but I am not representing the hospital”. In this case, the family does not want to hear how sick the patient is. They want to know what is going to be done to help the patient come home. Medical professionals often know that with a disease, infection or damage to certain parts of the body, patients won’t get better. This family wouldn’t hear any of it. As their advocate, it is important to listen to them, hear their needs and keep others opinions, including my own, out of it.

The Advocate's Responsibility

There is no magic to being a patient’s advocate. We cannot guarantee a perfect outcome. I just read a blog that was entitled “Be A Patient Safety Advocate. Help Stop Medical Malpractice”. I knew that it was from a lawyer because it used the term “malpractice” and we use the words error, injury or adverse event. It may often mean the same thing but malpractice is a legal term.

 In this case an advocate is a legal advocate, fighting for the family or patient after the injury or death. But, make no mistake there are never guarantees.

He used this scenario in his blog: "In a recent case, a man suffering from intestinal pains was admitted to the hospital where he was diagnosed with Diverticulitis. Blockage was detected the next day and surgery performed. During surgery, his intestines ruptured. Then he suffered a heart attack. The man died thirty days later from sepsis and gangrene. The family filed a wrongful death lawsuit alleging the ER physician misread the patient’s X-rays."

This is the sort of case an advocate would fear. Many patient advocates are hired by the patient or family and paid (usually very well) for their time. But what if an incident like this happens? What if the patient becomes infected even with an advocate? Is the patient / family entitled to a refund? Are advocates making patients believe they are safe because they are there or safer?

How can we count the lives we save? When a patient leaves the hospital healthy because I have been there for 10 or 12 hours or more, weren’t they supposed to leave healthy? What about the patient who contracted an infection, just days after I left her bedside after being there over 90 hours?

 I am confident that no one will ever guarantee a “good” outcome, but I wonder what people think of the role of an advocate when there is a "bad" outcome.