Being Alone With a Healthcare Provider

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.

Family Centered Patient Advocacy

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

Don't Second Guess Yourself

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.

Don't Tell Me Not to Worry

Don't Worry

Grrrr,  The one thing that really gets under my skin is when a doctor (or any medical professional) says to the patient or family member (who is caring for the patient), "Don’t worry” instead of answering the question!!!  The mom asked a specific question about the readings on her son who is ICU for the fourth day, where she sits and sleeps each night next to his bed.  THEY keep changing the diagnosis, and medication to treat the newest diagnosis and she asks a simple question about the numbers and the doctor, in her pumps and white coat answers, “Don’t worry about that the nurses are here to watch that”.

No, here in ICU the nurses walk out of the room and go – we don’t know where for long periods of time.  Mom has had to get the nurse when the vent came undone and alarms would go off.  Mom was right each time she thought her son had a fever and the nurse didn’t think so but he did have a fever – changing the care plan.  Mom has all the records of his past treatments, tests, medications, doctors, allergies, illnesses …. And you can’t answer the questions because you are…… so busy and important?

I would have liked to say, do you think this is the 1960’s where family doesn’t ask questions?   Can’t you just answer the question or don’t you know the answer?  Aha!  That’s it, you must not know because now the mom feels like you have just patted her on the head and said go away little girl.  How DARE you not answer her question!   But that’s what I would have said, mom wants to keep peace.

Here in this hospital families are asked to leave during rounds and during shift changes.  This makes moms and family more anxious.  That also is so ancient.  Patients who can’t speak for themselves, have a rare disorder and are intubated in ICU need their family there especially when the doctors come around.  Studies have proven this is helpful to the patient's safety and care.  In ICU when a patient can’t speak or understand what is being said, they should welcome the mother there.  She would probably have less questions all day. 

One nurse told me it’s about HIPAA, The other patient’s privacy.  I told him “Don’t tell me about HIPAA, we hear all day long what’s going on with the patients in the next bed and their family hears this patient’s information.  No one is buying media time to report it”.  He went back to his desk.

Some articles on including the patient in shift changes:

CaseStudy : Addressing Patient Safety During Multidisciplinary Collaborative Roundsat Concord Hospital

Bedside Shift Report Ensures QualityHandoff

Ideasfor Bedside Reports for Nurses in a Hospital Setting

Incorporating Bedside Reporting into Change-of-Shift Report

Bedside Manner(s)

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.

Newsday Uncovers What We Need to Know

Following the News

“Doctor Busted” the headline reads in today’s Long Island Newsday on page 4.  A Long Island doctor was arrested on charges that he was illegally prescribing drugs to people who didn’t need them and were not even seen as his patient.  Dr. Telang has written over 40 articles and works for the National Institute for Health.  He has a very impressive resume.   The story also reads that his office is in Port Jefferson but looking at the NY State Physician Profile website, it says that he is practicing in Upton and Bethpage.  The state physician profile says nothing about Port Jefferson.

In the same article we are reminded that Telang is the third doctor in the past month who is part of this investigation.  Dr. Leonard Stambler was also accused of selling prescriptions for pain killers. He too is listed in the physician profile website as practicing with a clean record.  Besides one small payment from a medical malpractice case, he looks like a fine physician if we count on the states profile to help is choose a doctor.   

Newsday reminds us that Dr. Eric Jacobson pleaded not guilty of charges that he wrongfully prescribed pain killers from his Great Neck office when in fact the NY State website says he practices only in the Bronx – and he has a clean record too.  Dr. Jacobson is the doctor who prescribed thousands of pain killers to David Laffer who killed four people at a Medford pharmacy robbery.

Do you remember Dr. Sanji Francis who was led away in handcuffs 2 years ago this month?  NY State Physician Profiles has him as surrendering his license but Healthgrades, an independent organization rating doctors and hospitals  has him still practicing in Massapequa LI, NY.

Also in today’s Newsday a health aide is accused of stealing $3,000.00 from an elderly man.  So, besides all the inaccuracy’s in the records that are supposed to help us gather empowering information, don’t believe that no one in healthcare wakes up and plans to hurt someone.  For some, they not only plan it, it has become a lifestyle.

HIPAA, HIPAA, HIPAA!!

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, 2012

Time: 1:00 – 3;00 PM

Where: 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.

Hospital Readmissions

The Cost of Re-Hospitalizations

When it comes to preventing hospital readmission's, no one wants that more for the patient (or family) than PULSE, a grassroots patient safety organization.  Not only because of the cost to health insurance, Medicare and Medicaid but because of the cost to the economy and risks for the patient’s safety for a number of reasons .

Hospitals, as we already know are dangerous places.  There are high infection rates, possibility of patient mix-ups and risk of falls.  But what about the additional lost work time for the family because of a hospital readmission or what congress is calling a re-hospitalization?  There is additional time for replacement of staff, payment of sick time, and of course using Family Medical Leave when a family member has the right to be with the patient or take care of things at home.  Getting out of the hospital is important for patient safety reasons.  So how do we get the patient home and to stay home which we all know is the best place for the patient?

As a patient safety educator in the community for over 15 years, I am confident that the public wants their family home too.  Given the tools to help with patient compliance, understanding discharge instructions and safe medication use are all important areas patients and families can play a role in reducing re-hospitalizations.  This is not something we need to “work on” this is something we have done since 2006 with Family Centered Patient Advocacy Training”.  Our next training is February 7 at 6:00 PM.

Nice Works for Safety

Being Nice in the Hospital

As I walked through the hall of a hospital I needed to remind myself that it was, in fact a hospital.  Each employee smiled and held the door.  In this very busy hospital with crowded hallways, I had to remind myself that this was not a hotel.  The volunteers were friendly and courteous.  The cleaning crew smiled as they walked passed me and no matter where I was, someone always seemed to want to know if I needed help finding something.

I watched as an employee escorted a woman off the elevator and brought her to the cafeteria following a brief interaction on the elevator.

In most cases I would say that “nice” doesn’t make an organization competent.  But, in some cases, being nice in a hospital setting can relax the patients and their family, it can help patients be more honest about their illnesses and problems allowing for more accurate record keeping, and it of course, makes patients want to come back.

No, being nice is not a sign of competency but when it is across the board, being nice obviously is coming from the top.

Informed Consent

Informed Consent

Is it consent, if they aren’t informed?  A friend of mine who is a paramedic explained this to a colleague when treating a patient at his home while on a call.

Kyle has been a paramedic for many years and also works in an emergency room as an Emergency Room Technician.  His skill for treating people in an emergency go way beyond their physical needs.  He is gentle and kind and also willing to take the time to explain the options to a patient.

I like to ask him about his calls and they are usually uneventful but interesting non-the-less.  But on this evening, following his shift, he explained to me about a patient’s pain and discomfort and request to not be brought the hospital.  Kyle explained to this man what they can do for him at the hospital to relieve his pain.  Or, he can stay home and what can happen to him if he refuses care.  What made this conversation interesting to me, someone who is sensitive to health literacy or anyone’s capability to communicate with each other especially under stress, is that Kyle’s colleague questioned the man’s capability, as an adult to make an informed decision and give consent.   “When someone doesn’t understand or know their options” Kyle explained to his colleague, “Then they are not informed”.