Monday, January 30, 2012

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

Thursday, January 5, 2012

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:
Incorporating Bedside Reporting into Change-of-Shift Report