HIPAA, HIPAA, HIPAA!!

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HIPAA What Does it All Mean??

I just received another conference notice.  This time, it’s about HIPAA, it will be held in Washington DC for the small registration fee of $1,195.00. But, if you are late paying, the cost goes up to a measly $1,795.00.   This 3-day conference will cover breakouts, keynote speakers and probably everything and even more than you ever wanted to know about patient privacy. Do I sound sarcastic?  Maybe just a bit?  What about us patients who walk into a doctor’s office or a hospital setting and sign that we received the HIPAA policy (and have no clue what it says).  Or, we are told “no” for any number of things like we want to find out about a patient, want to accompany a patient to a doctor’s office or are trying to help a patient / friend get information.  We get “HIPAA, HIPAA, HIPAA” (said in the whiny Jan Brady voice).I wouldn’t pay $1,000.00 to go to Washington to learn about HIPAA nor would I pay $100.00 and now YOU don’t have to either!

Greg Radinsky, vice president and chief corporate compliance officer North Shore-LIJ Health System,

On February 1, 2011 NorthShore LIJ Health System is lending out their Vice President and Chief Compliance Officer Greg Radinsky to help us, the general public understand “HIPAA Everything You Want to Know About Patient Privacy but Are Afraid to Ask"  and it will be FREE to all who want to attend.  We just ask that you bring your business cards and take notes.  You may never get another chance like this again!
When:  February 1, 2012Time: 1:00 – 3;00 PMWhere: South Nassau Unitarian Universalist Congregation, 228 South Ocean Ave. Freeport NY
Who should attend:  Anyone who advocates for patient’s, is a patient or may be a patient and wants to learn about HIPAA in terms you can understand.
RSVP to PULSE (516) 579-4711 or icorina@pulseofny.org

See a list of upcoming free educational programs here. http://www.pulseofny.org/series.html

This program is sponsored by the PULSE of NY Patient Safety Advisory Council

About PULSE:

PULSE is dedicated to raising awareness about patient safety and reducing medical errors through advocacy, education, and support. We work to empower the public to make informed decisions, increase effective communication and respect between healthcare providers and the public, and create community partnerships that will foster and ultimately lead to safer healthcare environments.

Bedside Manner(s)

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Snotty Nurse

We named her “Snotty Nurse”.  Not a very nice thing to call someone who works with critical care patients and sees what is probably the worst of the worst in the hospital.  But, her bedside manner just wasn’t there.  When the nurses change shifts or doctors did rounds she would say to anyone there quietly sitting at the patient’s bedside, “You have to leave” in a tone that was anything but pleasant.  No explanation.  When the patient, a 20 year old boy just opened his eyes and recognized me for the first time in over 24 hours and he squeezed my hand while scared from the ventilator breathing for him, I begged her to let me stay 2 more minutes.  “He just opened his eyes and is holding my hand tight” I told her.  “No, you have to leave” she said abruptly.  Reluctantly I gathered my things and left so the doctors could talk about him without any input from the people who know him best.She doesn’t say hello as all the other nurses do.  There is no greeting or acknowledgement, but  she will grunt something if someone is in her way or if we greet her with a “good morning”.  She won’t explain things to the patient’s mother unless asked and when one guest tried to relay information, she gave a sarcastic reply.I began to realize that this nurse can actually become a liability to a hospital.  Were something to go wrong, the family may feel she didn’t listen and want to hold her, as a representative to the hospital, accountable.  There was a time that the patient’s family didn’t want to “bother” her with information, that was important about the patient’s look which turned out to be relevant to this patient’s outcome.  Some people feel that bedside manner is irrelevant but the fact is bedside manner is an important piece of communication which can help predict an outcome.  Most probably, the care will be fine and the outcome will be good.  But, if not, I for one will wonder about this nurses patient care.

Don't Second Guess Yourself

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A Mother's Love

I have been a patient advocate for over 18 years.  Starting when my son died 20 years ago but then I had another child 19 years ago and another very premature son 18 years ago.  I became Matt’s advocate even before he was born when doctors told me I miscarried, I demanded a sonogram to show he was fine inside of me, and my skills strengthened when I gave birth to matt 4 months early.  I spent almost 5 months in neonatal ICU and learned, from the caring nurses, what questions I should ask and how to be heard.  In 2005 a group of people led by PULSE of NY started gathering to develop information we called Family Centered Patient Advocacy and we wrote a book on how family members can become patient safety advocates.  Since then another group of doctors a pharmacist, social worker and lay people developed a curriculum to follow the book.  To date we have trained about 250 people mostly small groups on and near Long Island to partner with the medical team for the best possible outcome in their medical treatment.  I have put in over 600 bedside advocate hours in the last few years and continue learning from people I am supposed to be teaching.  It is a never ending “learn fest” when it comes to what can happen, or go wrong in a hospital. 
70% of bad outcomes come from poor communication.  It’s crucial for patients and their loved ones who care for them to understand the care plan, treatment and medical condition that is being diagnosed or treated.   
When my dear friend called to tell me something was wrong with her son, his nails were blue and he was slumped over, she said, it was my first reaction to say “If you think something is wrong, than it is”.  She was right.  As he lay in the emergency room late that night, long after I left, she asked someone to take his temperature.  The nurse could not awaken him.  Two more times he could not be awoken and finally the next morning he was intubated and there he stays, days later, in ICU with his mom lovingly watching over him struggling with staff to get answers.
There is no question, if she did not get him to the hospital that night, he would not be here today.  They would have all gone to sleep and there would have been no one to try to awaken him. Yes, it was a mothers actions that saved her child.

Family Centered Patient Advocacy

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Family Centered Patient Advocacy

“I have no idea who is in charge of my husband’s care.  One doctor says one thing and another doctor says another.” The emotional voice of an elderly woman, obviously scared for her husband’s well being, was on the phone early one morning.  She explained that her husband was hospitalized for a stroke, and she had questions that weren’t being answered.  She spoke to the patient representative at the hospital but still was confused about his diagnosis and the plan for his care.

The PULSE Care Coordinator (CC) didn’t need the details of his health; she only needed to know his name, the hospital and room number.  Following the normal routine of phone calls, first to the patient representative and then to the manager of the patient representative’s office, the CC  explained that there is a patient’s family in need of extra attention.  By the time the CC called the patient’s wife back, the Patient Representative from the hospital was walking into the patient’s room.

Calls like these are common at the small office of PULSE of NY a community-based patient safety organization. It often helps when an independent person or Care Coordinator, helps the family navigate the health system, knows who to call and helps the family with understanding their rights.

When visiting a family who had a very sick new mother in the hospital for a week, the CC learned that the family didn’t understand the care plan.  The CC organized a meeting with the doctor’s in charge, the nurse manager and the family and was able to sit with the family in the meeting and assign a family member to take notes. 

The Family Centered Patient Advocacy Program has been developed to train and support, as a patient’s advocate, the family member or friend of a patient scheduled for surgery, diagnosed with a life changing condition, elderly, suddenly injured or scheduled for an invasive procedure.  This program has been developed to empower the community or family member(s) to understand their role as an advocate and partner to help ensure the best possible outcome in the patient’s care. Family Centered Patient Advocacy assists the patient’s family in navigating the health system to help ensure safe, quality healthcare services.  While the family of the patient may be too emotionally involved to help make decisions, understand instructions or ask appropriate questions, Care Coordinators from PULSE of NY are trained to help the patient, and their family in person or by phone to make the best decisions.

A trained Family Centered Patient Advocate, with the help and training Care Coordinator will be able to help:

·         A patient speak-up for their needs and understand their rights while hospitalized,

·         Reduce the chance of patient hospital readmission,

·         Assist the patient in understanding the diagnosis, care plan and discharge instructions,

·         Assist in reducing medical errors with training in policy and patient safety standards,

·         Speed the recovery of a patient who has assistance from professional help at home, trained community members, family and friends.

Care Coordinators can be on call to help the Family Advocates over the phone or in person if there is a breakdown in communication, stressful decisions to be made, or the patient needs help in preparing for the doctor’s visit or a hospital stay.

PULSE of NY is looking for independent Care Coordinators who will help the family and friends of the patient understand the healthcare system and what they can be doing to help oversee a patient’s care.

PULSE of NY is seeking volunteers to be trained as independent Care Coordinators who help family and friends of a patient understand the healthcare system and who assist in overseeing a patient’s care.

In many cases, the coordination can be over the phone.  When there are hospital visits, it is often to listen to the patient and family about concerns which are usually about communication.  Explaining treatment or diagnosis must be left to the healthcare providers, but a Care Coordinator can facilitate the patient-provider conversation either in person or over the phone.

Today, more and more family members are expected to be at the bedside of the patient, but they are not taught what they should be doing there. Care Coordinators help the patient’s family and friends understand the importance of hand hygiene to avoid infections, checking medications to prevent medication errors, preventing falls, preparing for the doctor’s visit with lists of questions and concerns, advanced directives, record keeping, and surgery safety protocol, while helping with health literacy and communication breakdown within the hospital and or medical facility.  The Care Coordinator may have little contact or communication with the patient; instead, their contact is with the family, training them to be the patient’s advocate.

If you are interested in being trained as a Care Coordinator to help the family and friends of the patient as a patient’s advocate please call PULSE of NY at 516-579-4711 or e-mail icorina@pulseofny.org

Being Alone With a Healthcare Provider

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Alone with the Doctor
I got a text message from my teenage son who is away at college and he tells me he is at the nurse with his female friend and the nurse told him to leave the room. Yes, the same son who asked a doctor to wash her hands and got an “annoyed attitude”.  As her advocate he expected to stay with her.I reminded him that the nurse may have wanted to ask her about her sex life, drug use or sexually transmitted disease and was not going to ask, or expect an honest answer, in front of him.  “She fell and hit her head, it has nothing to do with sexually transmitted diseases” he told me.  But, I explained to him, being pregnant might make a girl become dizzy or, was she actually being beaten or abused?It was a good reminder that patients need time alone with their healthcare provider.  As advocates, we tend to want to be with the patient – always – but it doesn’t always make sense.A few years ago I was at the bedside of a patient following her surgery when the nurse was asking standard questions; do you smoke, snore, are you safe at home………?I later pulled the nurse aside and suggested that a question about a patient’s safety be asked privately.  “What if I were the one abusing her?” I asked the nurse.Although we want to be with our loved one, it makes sense to leave a husband, wife, friend or other family member alone at some point to have these private discussions with their healthcare provider if they want.  One way to do this is to say ahead of time to the patient, “I don’t mind leaving you alone to talk privately with your doctor”.  If warned in advance, it can be done at any time during a visit.  A patient can always say “no, stay with me” but it gives them an opportunity to be alone and not offend you.

Accredited and Complaints

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Accredited Facilities

I was always pretty confident that I would recommend a Joint Commission accredited facility instead of one that is only inspected by the state.  Joint Commission standards are higher than the state and the state can easily say they are overworked and don’t have the budget to hire more people to check on problems.

As I visited a local healthcare organization recently which was not accredited by The Joint Commission, the differences started to unfold in front of me.  Although I am far from being an expert, the whole feel of cleanliness and care was very different than any place I ever visited.Besides the fact that almost none of the staff say hello, greet the patient or visitors with anything but a “did you call?” or even smile when I smile at them, they seem unhappy having a job and particularly working in this facility. I went to the nurse’s station and asked a woman if she had an antibacterial wipe that I can use to wash a television remote that fell on the floor.  She handed me a container that was empty.  I showed her it was empty and asked if she had antibacterial wipes.  These, I explained do not say they kill germs and are for hands, not objects.  She stared at me for a moment and handed me another container of the same product.I can’t be sure that if this facility was accredited by the Joint Commission it would be any different, but when I started to see areas of concern, I thought about who the patient or their family would complain to.  The state has reported being low on funds.  What if they never got to my complaint?  Who would I complain to then?  The Department of Health is not going to go out of business, even if they are backed up for years.  Organizations like The Joint Commission are independent and would have to hire more people if the problem got out of hand. I wouldn’t say that a facility not accredited by the Joint Commission is a better choice or not.  What I am concerned about is what if things aren’t going smoothly.  Who would you want on your side

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What's in a Word?

A 17 year old who is living with me was desperately in need of a tonsillectomy. I made the choice to go through it with him even though my child bled to death, for 8 days following his tonsillectomy a number of years ago. Repeated trips to the emergency rooms were halted with the doctors saying "don't worry". Years later, I realized it is my job, as a parent, to worry and those words, used by a healthcare professional are worse than fingernails on a chalk board............... now what?

The surgeon answered all of our very suspicious questions about his history of tonsillectomies very eloquently until I asked the young man to leave the room and shared my own personal experience with the doctor. He looked me in the eye and said "I understand your concern".
Imagine my shock when the child I am caring for, on day five, began spitting up dark red blood. When I reached the surgeon by phone, he again said "I understand your concern" and again said it after he treated him at the hospital. Not until about 2 days later did I realize this physician has never used the term "don't worry".
I thought it important to share this and let people know how important words can be when there is an emotionally charged situation. 
The words "don't worry" can be seen as an order - or being told what to do (or not do). They leave no room for dialogue unless someone who is scared wants to put up a fight. Rarely will someone stop worrying because someone tells them to. They will, instead hold back their true feelings and concerns, maybe pleasing the medical professional who doesn't want to explain any more??
This surgeon was justifying my feelings. By recognizing he understood, I had no reason to pursue my concerns because he heard me.
I hope people in the medical field will throw out the words "don't worry" and try using, instead, "I understand your concern".