Thursday, April 24, 2014

What You Can Do to Help

When Somoene is Diagnosed

A friend just told you she has an incurable disease.  Your first reaction is to:
A. Talk about everyone you know who has the same disease and share their stories.
B. Ask what you can do to help.
C. Tell her that you are sorry to hear that.
The answer is C.
When someone comes to you with a life altering event, just being there is often better than asking questions – which is what happens when you ask what you can do to help.  If your friend wants to share more information, she will.   You may want to ask permission to ask more questions.  This will give her the opportunity to say “No, I don’t want to talk about it” or they can open up and share.
Instead of asking your friend what you can do, you may want to instead say “Can I let you know some things I might be able to do”?  When your friend agrees, you can offer some of the things listed that you feel comfortable doing – and don’t let her down.  Make sure you can do it:
·    Research doctors, hospitals and treatments.
·    Help with organizing medications
·    Go to the clinician’s office and take notes, prepare questions and bring information.
·    Organize or help with cooking, child care and family matters
·    Organize bills and insurance information.
·    If she is hospitalized, someone should be with her at all times to make sure she is getting appropriate care, proper medications……………
Delegate, delegate, delegate!   You don’t have to be the person doing all of this but bringing others to support your friend is helpful too.
Find out from your friend who they want as part of their “care team” and start calling.  The people on the list  may say no to you but you won’t be offended.

Registration open for Advocacy Training

Monday, April 14, 2014

Lady from Limerick

There is a New Lady in Town

A new play, Lady from Limerick, opened at the Theatre for New York City this past weekend. It is a thoughtful and eye-opening performance based on the true story of Kathleen Kelly Cregan, a woman from Limerick who died in New York after plastic surgery in 2005.

The play includes a monologue from her Park Avenue surgeon, who had 33 malpractice settlements against him. Audience members later said that they could see his side of what went wrong.

During the discussion conducted by patient safety leaders following each night’s performance, audience members described their mixed emotions and "sympathy" for the plastic surgeon, but have also said that they gained greater understanding of a health system that is broken.

"I have been to two Broadway shows this week," one woman said during the discussion. "This is way up there with them."

This is a powerful play, not just because of the spectacular acting, but because we arrive thinking we know what it will be about, but we leave wondering: Can we really "blame" anyone, or is it the system that is letting the public down?

After the Sunday afternoon performance Suzanne Mattei, Director, New Yorkers for Patient & Family Empowerment, handed out a detailed description of the actual case from court records, and a patient’s bill of rights. Mattei led a brief discussion following the play.
Dean Scott Schildkraut, who plays the surgeon and gives a powerful and compelling performance as a doctor who wants to make women beautiful, explained to the audience during one talkback that he researched the doctor and found he had done some important work before this tragic event.
Lady from Limerick leads us on a rollercoaster ride of emotions, wondering who to feel sorry for and asking how this can even be a problem in a modern healthcare system.

Are patients taking surgery seriously enough? Are clinicians being monitored closely enough? Are people being given enough information to make informed choices?
You will laugh and you will cry but most of all, you will think….
You still have time to see it. Next shows are April 17, 18, 19 and 20. Order tickets now or call to reserve your seat: (212) 254-1109


Sunday, April 6, 2014

How an Advocate Can Help

A True Conversation

A patient's family member calls for help on a Friday evening.

Husband – My wife has been in the hospital for 5 days and is still in pain.  They want to send her home tonight.

Advocate – Are you concerned about her going home?
Husband – Yes.  She hasn’t seen the specialist and I asked for a consultation.  Days have gone by and nothing.
Advocate – Who have you spoken to?
Husband – Nursing supervisor, patient advocate and some nurses.  They walk out of the room.  I get angry and they turn their back on me.  I’m exhausted and don’t know what to do.
Advocate – Tell me how I can help.
Husband – I don’t know.  I don’t think she should be going home yet though, and its 8:00 on a Friday night.  It’s so late already.  No one is here.
Advocate – Do I have your permission to call on your behalf?
Husband – Yes.
Advocate – Tell me your wife’s name and room number
Calling the hospital and leaving a message for the nursing supervisor.
My name is Ilene Corina.  I am with PULSE of NY a patient safety organization and I need the person in charge to call me back.  I was contacted by the family of a patient in your hospital about concerns they are having. 
Operator – Who is the patient?
Advocate – I will discuss the details when I get a call back.
Nursing supervisor calls back within 10 minutes.
Nursing Supervisor - Hi my name is xxx from xxx. Someone called about a problem?
Advocate – My name is Ilene Corina.  I am with PULSE of NY a Long Island patient safety organization.  I am calling about Mrs. xxx  in room xxx.  I am not going to ask you any questions about her but her husband feels it is not appropriate to send her home yet.  Can you please look into this?
Nurse – Yes, I’m on my way and will take care of it now.  Thank you.
Husband calls back a few minutes later.  She stayed another night and the next day got the consultation she requested.

Sunday, March 30, 2014

Lady from Limerick

One Woman's Story

Why is the Lady fromLimerick important?  This play, written by Claude Solnik, a writer and reporter from Long Island, is based on the story of Kathleen Kelly Cregan, a woman who came to New York from Ireland to live the dream of beauty.  The dream was snuffed away when she died following her plastic surgery.
When the battle to learn what happened was played out in a court room, there was settlements in the millions received by the family.  Actually, the family probably didn’t get all the money, the lawyers get paid – and so they should, and there are plenty of fees that come out of it.  Whatever they received it wasn’t the value of someone’s life.   Kathleen used a doctor who had over 30 malpractice settlements against him but was on television and in magazines claiming to be the best at what he did.  Kathleen Kelly Cregan followed a fantasy and used a doctor that was being questioned even by his peers.
Kathleen Kelly Cregan was not a number.  She was someone’s mother and wife.  In the play we will get to know the writers vision of what life might have been like for her in a small town outside of Limerick.  The story of this woman is the story of many people who don’t make the news and don’t have thoughtful writers bringing them back to life. 
Lady from Limerick is not one person’s story.  It is the representation of thousands and thousands of stories that don’t get told.  On April 10, 2014, her story will get told for her. And for all those she represents.  Like the 239 missing passengers who went down with that plane,  Kathleen Kelly Cregan represents at least that many -  because 1 is a number, and she matters too.

Saturday, March 1, 2014

Patient Safety Awareness Week, Sad or Celebrate?

Patient Safety Awareness Week 2014; Sad or Celebrate?

Patient Safety Awareness Week is a bittersweet time.  It can be a time to celebrate all the work being done in safe patient care but it is also a time to reflect what we have lost and what had gotten us into this “mess”.
As my youngest son graduates college with a bachelor’s degree in business  management and moves on to become a chef at a very prestigious hotel many miles away from me, I can’t help but remember with pride how he came into this world.  Barely hearing his cry at just over 1 pound and 10 inches long, some say he was born too early.  Obviously they were wrong.  He was born just right.  At 23 weeks, he wasn’t “supposed” to survive.  But one doctor said I had a choice.  I chose to try to save him.  It was obviously the right decision.
His stubbornness to survive was also the same personality that got him his bachelor’s degree in 2 ½ years, got him the job he wanted as an intern chef in Kansas City and now at 20 years old, the job he wanted since he was 4 years old and told me he was going to be a cook like his grandpa.
I am reminded over and over of the nurses who took care of my baby, allowed me to hold him against the rules and allowed me to sneak up a friend for moral support.  The consent forms I had to sign for experimental medications and procedures that would ultimately save his life.   Months on a ventilator has left little scars and the poking and prodding that was done left marks only a mother could see.  I am proud of him and grateful every day to the hardworking, caring, sensitive and loving nurses, doctors and support staff who gave him life. 
How difficult it is, at the same time to recognize at any moment, these wonderful caring people can make an error or be involved in a situation that can cause the traumatic death or an injury because of a medication error, an infection or a procedure that may go wrong. 
I have not forgotten that it is the death of my first son from a preventable medical error that began my journey into patient safety but I also don’t want people to forget that there are many lives saved every day because clinicians take chances.  
We would probably be more forgiving of the error were we treated with dignity and respect following an unplanned outcome.  I believe most people are not as angry at the error itself but at the way patients and their family members are treated following the event that can cause injury and harm.  We rarely think about the pilot who gets us to our destination safely.  But, were there to be an unplanned outcome, that pilot would be under the microscope.
As we approach Patient Safety Awareness Week this year, I hope we all can think about how we can celebrate patient safety and all the good that is happening to help make sure there are no more bad outcomes.  And if there are – we need to all be part of the discussion to make sure it never happens again.