Thursday, June 26, 2014

Deciding on a DNR is Very Personal

The DNR
 
If I had a disease and it would costly to my family, and the people who work in the healthcare system say it’s hopeless today, I might say let me go.  No acts of heroism to pump my body up with chemicals just to “get another few months”.
But as a watch someone who is dying, my thoughts change drastically.  Fight this thing his loved ones are thinking and sharing amongst themselves.  Even though the patient knows how serious his health is, he wants to live.  He wants to be with his new wife.  He wants o play his music.  Giving up means never again.  Shouldn’t we be permitted to put up that fight without others judging?
It’s such a personal time.  A DNR (order that means do not resuscitate) can be changed over and over.  It will be honored.  It’s not for outsiders to judge.  Not for the advocate to have an opinion.  It’s not for the nurses to decide or doctors to decide.  It’s hard enough to want to fight – who knows if there are miracles. Sometimes thats all we have to hope for.
 
Information about the DNR:

Saturday, June 14, 2014

I Didn't Know, What I Didn't Know Until Prudential Came Along


I Don’t Know, What I Don’t Know

No, really, I don’t know, what I don’t know.  I have no idea, what I don’t know.  How could I? 
I sat in a Prudential Insurance seminar recently.  There was a free dinner and speakers to talk about different types of insurance.  I was invited by an insurance salesperson, because we were going to meet in a week or so to go over my policy.  This friendly young man suggested I go to the seminar first.  I took my 22 year old son and we went not knowing what to expect but at least we would have dinner together.
As the lecture went on, a man sitting near us yelled out “so what does variable life mean?”  The presenter stopped and explained it.  Then another question and another.  I thought I knew many of these answers.  It never even occurred to me that I didn’t know.  I had thought I knew, but this was an eye opening event.  Not just about insurance but because if we don’t ask questions, because we feel inferior, scared, embarrassed, vulnerable or rushed for time, we lose out on not only not knowing, but making wrong decisions.
I have lots of questions when I buy an air conditioner or stove, or any large or small appliance.  I know what I want when I buy a car but still have lots of questions.  If, at any time we weren’t encouraged to ask questions when purchasing an item, we can leave and go someplace else. 
When it comes to insurance, or a visit with your medical care team, it’s often so intimidating and we just don’t know what to ask.
Patient support groups are crucial for the opportunity to share information and feel safe asking question.  Talking to friends and family might help.  Learn what you don’t know, before you go to your next appointment wherever that might be.
Yes, Prudential got my business.

Saturday, May 17, 2014

Questionable Doctor Report

Doctor Information

I am pleased with the recently released report  Questionable Doctors because I am confident that our healthcare system needs serious work  when it comes to patient’s safety.    I just think that the decision makers need a push in the right direction.
On the train, on my way to the NY State Department of Health patient safety committee the day after this report came out, I opened up the local newspaper, Long Island Newsday, and read an article about the wife of Dr. Anand Persaud, a Baldwin physician who improperly issued thousands of prescriptions for oxycodone and other drugs in exchange for cash payments in 2011 and 2012.   Now his wife is charged with criminal tax fraud and offering a false instrument for filing in the first degree.
Prosecutors said Dr. Persaud, an internist, wrote the prescriptions for powerful painkillers during at least 5,800 patient visit and sold prescriptions for oxycodone to undercover agents posing as patients without examining or questioning them.
A July 2013 Newsday article reports New York Attorney General Eric Schneiderman, whose Medicaid fraud unit conducted the 13-month investigation, said Persaud is one of the state's top prescribers of pain pills.  An August 2, 2013 report on News 12 Long Island reported Dr. Persaud is out on $500,000.00 bail.   Then, for almost a year, nothing until I read about his wife yesterday.
Looking at Dr. Persaud’s information on the NY State’ Physician Profile website, www.nydoctorprofile.com Anand Persaud is presently practicing (or could be) with no questionable actions (other than 3 settled medical malpractice cases) The state doesn’t add “under investigation” to their comments.
So one may say, if he is innocent until proven guilty Google your doc to get up to date information – if you even want to know.  

Friday, May 9, 2014

Error or Complications?

Did Something Go Wrong?

The patient was hospitalized for a few weeks following the surgery.   Complications made it impossible for the elderly patient to go home.  When the adult child originally called, it was to talk about the mistake, the pain their parent is having and the complications during surgery which caused the injury.  A call once in a while turned into a call a day, which turned into two calls a day with panic in the voice of a loved one describing the errors made in a parents vulnerable state.
I took the 30 mile drive to visit the family.  Getting there earlier than planned, I was in the room with family when the doctor arrived.  The doctor had an interpreter because neither the patient, nor the adult child there at the time spoke much English.  Assuming that this patient was in the hospital longer than planned because of the injuries caused by surgery and the “young, unqualified” doctor who did the surgery, (as the caller described him) caused severe injuries, I sat back and listened as the doctor explained through the interpreter, the next steps.
Now the family member who was calling me arrived.  I asked the family if I may ask questions and they said “yes”.   I asked the doctor what happened.  His explanation was clear.  The surgery was complicated.  He explained the possibilities of injuries having the surgery the way it was done.  The team cautioned about getting this surgery but the patient wanted it this way.  The family agreed with their elderly parent.  The patient was now recuperating and getting good care, in a private room with a bed for the family members to spend the night.
I asked the patient’s family if they understood that this surgery had complications, probably nothing was done “wrong” but still it wasn’t the best outcome.  They agreed.  I acknowledged their disappointment, frustration and confusion.  The patient was discharged a few days later and is doing fine.  The family is together. 

Friday, May 2, 2014

What Does "I'm Sorry" Really Mean?

An Apology

Is an apology OK if it’s from over 20 years ago? Is it OK if it comes through someone else? Is an apology always healing or meaningful or even necessary?
My friend Rachel, a critical care nurse, who is warm and gentle, passionate about patient safety and patient’s rights, asked me a few weeks ago if I had ever sat down and spoken to the doctor who did my son’s surgery. I told her I hadn’t but the truth is, the conversation I would have had with him has played out in my head over and over again. I spoke to him briefly immediately following my son’s death. He sounded concerned. But that could have been because he was nervous. I barely remember the conversation, but I was happy he’d called. My mother also spoke to him briefly. She remembers the conversation better.
Maybe if I had moved on, continuing my job at the post office instead of throwing myself into the world of patient safety, not knowing what happened to that doctor who was the last to see my son alive and said he was fine, wouldn’t matter. But after speaking to hundreds if not thousands of people who have lost loved ones over the years. I have become haunted, as I know others are too, by questions about what that doctor’s life has been like. Does he think of my son? Have any lives been saved because of him? Did his death ever lead this surgeon to pause and do things differently? I have been confident that I would never get an apology, but just knowing that his life has been affected still matters to me — yes, 24 years later.
I never “blamed” the doctor. I never felt he was the direct cause of my son’s death. After all, we saw four other physicians about my son’s bleeding in the week after his tonsillectomy. None of them picked up on the possibility of my son Michael bleeding to death, or on the infection that ravaged his young body. I always told people who asked that he was a good doctor and a fine surgeon, but something that I will never understand went terribly wrong.
Rachel asked me if she could call him and if so, would I be willing to talk to him. She told me, “I had this vision in my head of the two of you sitting down to say things that you may have both thought over the last 24 years.” I told her, “Of course.” In a perfect medical system, Rachel and I both agree, when things go wrong, patients, their families and the medical team should be able to have a conversation in order to learn what happened, to heal and make improvements. That didn’t happen for me and it’s still not happening for the millions of families affected by unplanned outcomes since Michael’s death. I sent the surgeon a book, Wall of Silence, about 10 years ago, in which my son’s story is described in detail. The doctor never responded. Earlier I wrote him a letter, to which he also never responded. In that letter I wanted him to know about Michael. I realized I would never have an answer to the question: does he ever think about what happened?
Rachel called me this week and casually began the conversation by telling me that she had spoken to the surgeon who did Michael’s surgery 24 years ago. She continued telling me about her conversation, which didn’t register. I had to ask her to go back and repeat it. I thought that call was something Rachel was thinking about but would never be able to pick up the phone to do.
Rachel said the surgeon sounded annoyed at her calling but he stayed on the phone for 25 minutes. She asked him if he would sit down and talk to me and he said “no.”
He explained to Rachel that the hospital directed him as to what to do, and he did it. He now has health issues of his own. The surgeon, now probably in his 60s, told Rachel that he has “hashed” this over in his head.
Rachel told him about my work helping others come to terms with their new lives after an unplanned outcome. The injury or death is actually just the beginning of the patient’s or family’s new life. For years I have been helping people dealing with the guilt of what could have been done differently when they placed their loved ones in the hands of those who caused injury or worse. I have spent time with families facing the trauma and heartache of a medical malpractice lawsuit, encouraging medical mediation, and working on fixing the system through educating patients and their families. Rachel told him I said he was a good doctor.
She explained to the doctor that she wants to work in a hospital where there isn’t blame and mistakes aren’t hidden.
The doctor wished me well, and told Rachel that he is sorry for what happened.
Now I have to wonder, did I finally get an apology? And why have I been saying for years that he is a good surgeon? Was it actually to protect me?
I got my answer, finally, because one person had the nerve to reach out to make a difference.  And that makes a very special person and a very special gift.

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.