The Patient

Are Patients a Burden?

By Ilene Corina

icorina@aol.com

August 2014

The patient was at least 450 lbs. He was very uncomfortable in his bed and due to his medical condition he kept soiling himself. I had to clean him up and change his bedding a number of times. This was the start of a conversation I had with a hospital worker (I will call Pat) about Pat’s day at work.

Pat described how co-workers would pass by this patient without attending to his needs, obviously considering him someone who would take extra time and need extra work, and could even pose the risk of a back injury. Disappointed at the lack of concern from co-workers, Pat treated this patient alone, with the dignity he deserved. “Doing it alone,” Pat explained, “there is more of a chance for me to be injured.” 

Because Pat was working alone, overtime was approved. “I knew there was a good possibility I could be injured,” Pat said. “But that didn’t seem to be a concern for anyone in charge.”

Morale is down in that hospital department and this lack of concern may be part of the reason. It was apparent that the traditional desire of medical staff to care for the weakest and most vulnerable was no longer present.

Pat wondered, “If I were the patient, would I be a too much of a bother for this staff?”

Medical injuries such as falls, infections and medication errors happen at the bedside. This is where patient safety training needs to happen. Medical injury does not happen in the C-Suite although that’s ultimately where staff morale is determined.

Because this patient was not in a private room, this lack of care was not only experienced by Pat, and the patient, but by the neighboring patients and their families. Other staff knew what was happening as did leadership (remember, they told Pat to stay and handle the patient alone). How can this be handled? Should Pat “complain?” Although that is a harsh word, that’s how it will be seen: as complaining. Should Pat report a “near miss?”  “I almost got hurt, or could have,” Pat could write in a report. Who should Pat tell about this experience? The same people who told Pat to stay?  Can’t you just hear middle level management saying, “What do you want me to do about it?”

So here we have it: a patient is sick or injured and vulnerable.  Add to that the other possibilities — disabled, unable to read, homeless, unkempt, drug-dependent, transgender, mentally ill, teen, unwed mother or any other category of “different” — and the sensitivity training is just not there.

It reminds me of the time I visited a woman who was disabled and in the hospital. I was called in by a local agency to check on her safety. They feared for her safety and at each visit the patient told me the staff struggled to lift her, wouldn’t listen to the patient when the patient tried to explain the best way to lift her, and a few times almost dropped her. But the patient feared retaliation if I were to go to management and try to work out a best plan for everyone involved.  Not long after my last visit I received a call from the agency. While hospitalized this patient was dropped, hit her head, and never woke up.

Bedside Story

Are There Any Real Changes?

I walk down hospital hallways narrowed by the clutter of computers on wheels, food and linen carts and staff standing in clusters talking amongst themselves. A loud machine waxes the floors as a man pushes it down the hallway and people barely move out of his way.

I’m visiting a patient who has been diagnosed with cancer, and his family. The prognosis is not good. I was there when he received the diagnosis from a physician eager to start chemotherapy that another physician later said surely would have killed him. Information is constantly being thrown at the patient’s loved ones, who are scared and lost in a cloud of emotions arising from fear, confusion and lack of sleep. Words are often unheard, instructions are a blur.

I remember the doctor telling this recently-married man the bad news — stage four cancer with “nothing” to do but palliative care — and recommending treatment. I asked the doctor, “What do you think he heard after you said he has stage four cancer?” The doctor continued to tell the patient what the treatment options were even though he had strict orders not to share this devastating news without the patient’s wife present. “I need you to sign a consent form,” the doctor told him.

Now the patient is in a third hospital and being treated for breathing difficulties. The medical staff kept telling the patient and family there is nothing that can be done for his cancer. Exhausted from lack of sleep, his wife constantly reminds staff that he is not there for cancer treatment. They had a plan. He is there to be treated for his difficulty breathing.

On each of my visits I notice the standard of care he receives. The only sink is in a bathroom near the window, yet no one ever walks past me to wash their hands. The gloves, closer to the door, were easier for staff to reach. They didn’t wash before grabbing them.

I suggest the family goes for dinner when I arrive. I do not need to be entertained. They go to dinner and I notice that the compression stockings are not connected. One of the visitors who stayed behind with me said that if they needed to be connected, they would be. I knew better. When asked, the nurse says someone “forgot” to hook them up. In the times that I visit, no one ever shifts him. He gets bedsores that the family explains, “can’t be helped.”

The patient is critical and might die soon, but for now, he wants to live. Still, in the 2½ hours I was there one evening, no one washed their hands, no one shifted him, a hose from his breathing treatment dropped on the floor and before I could stop the nurse she reconnected it.

I saw that the antibacterial gel container was taped over. I asked the patient’s family why. “Because he had c-diff,” his wife explained, and the antibacterial gel won’t work on c-diff. I asked if anyone ever washed their hands and the family said “sometimes.” Never while I was there. But I wasn’t there the 24 hours a day that his wife was there. Maybe they just didn’t wash while I was there.

Maybe everyone gets infections in the hospital. Maybe all hospitals “forget” to plug in the compression stockings. Maybe all hospital staff don’t wash. Maybe in all hospitals bedsores are acceptable. Maybe in all hospitals the patient doesn’t need an oximeter on their finger, or staff don’t shift the patient? Maybe all hospitals have cockroaches and the nurses argue over who will be the one to kill it late at night, like this one did. The list is so long.

But the family was happy because the nurses were “nice.” Families of sick patients don’t know what to look for. Hand washing becomes trivial. Families have no idea that the policies and requirements are not being followed: the patient and the family are happy if everyone is nice.

The family probably knows that the patient would have died anyway. I will always wonder what he died from. 

Rest in Peace. 

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:

NY State Department of Health  https://www.health.ny.gov/professionals/ems/policy/99-10.htm

From Medline Plus http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000473.htm

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.

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.  

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. 

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.

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.