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

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

 

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.