More Reasons Not to Trust the Medical System

By: Loolwa Khazzoom, Founder, Dancing with Pain

February 11th, 2009 • Patient AdvocacyPrint Print

How many different ways can a medical system screw up on one single patient, moreover a patient with an advocate who is watching over her like a hawk?

My mom was admitted to the emergency room on Monday afternoon. I stayed with her until after 12:30 a.m., not only to be by her side, but also to ensure that she got everything she needed and that she was well taken care of. 

Among other things, I reported to the doctor – who was a total sweetheart — that my mother’s nurse was speaking to and behaving with my mother in an abrasive manner.  I asked the doctor to talk to the nurse and request that she chill out.  Immediately after the doctor had that conversation, the nurse was very sweet to my mom. 

The night team included a medical student, who was scheduled to do an invasive procedure on my mom, with supervision. I said that I only wanted doctors with medical degrees to work on my mother. 

The supervising doctor tried to convince me that everyone was a doctor, that the student was simply “a student doctor,” that she was well-qualified and had a year and a half of experience.  I said I wanted doctors with degrees only.

While these interventions were uncomfortable for me, I go 100% on behalf of my mom.  As I said to the supervising doctor on the night team, “I don’t mean at all to be offensive.  Quite simply, this is my mother.” 

By the time I left the hospital, my mother had received several CAT scans and X-rays, as well as the procedure — through which a needle was inserted into her lungs, and three tubes of fluid were withdrawn.We were still waiting for a diagnosis from one of the CAT scans and from the tests that had been done on the fluid. The doctor was not sure if my mother had pneumonia or cancer. 

It was only at 8:15 a.m. on Tuesday morning that I got a call informing me that my mom had pneumonia, that she was getting a two-week dose of antibiotics, and that she would be discharged from the hospital in about an hour.  The doctor who called was the same as the one who had seen my mom when she had been admitted to the emergency room the day before.

I had canceled all of my meetings for Tuesday, except for one, so that I could stay with my mom on Monday night.  The most important meeting I had rescheduled as a conference call at 10 a.m. on Tuesday. 

A little while after that meeting, when it was nearly noon, I called the nursing facility — to see how my mom was doing and let them know I would be on my way over there.  The head nurse told me that the hospital had called shortly after my mother had arrived at the nursing facility.  They had said that they’d found air around her lungs on the CAT scan.

I called my mother, and she was very distressed.  Her nurse had told her that she had a blood clot, and that’s why she was returning to the hospital.  I spent some time speaking with nurses at the facility, trying to figure out why each of the nurses was saying something else. 

I then called the emergency room doctor and asked what was going on.  To confuse matters more, this doctor said that there had been no phone call asking my mother to return, that it was the mistake of the nursing facility.

I asked the doctor to call the nursing facility and speak directly with the nurses, to clear up what was going on, and I requested that the doctor call me back once she had spoken with the nursing facility, to let me know what was happening. 

Meanwhile, my mother called and informed me that the ambulance had arrived and was about to whisk her away to the hospital. Shortly after, I got a call back from the doctor, who said that there had just been a misunderstanding — that my mother had the same diagnosis as when she was discharged, and that there was no need to return to the hospital.

I called the nursing facility again. I could not reach the head nurse, so I spoke with my mother’s nurse and found out that my mother was already in the ambulance, on the way to the hospital.  I told the nurse about the conversation I had with the doctor.  She said she would call the ambulance and tell them to come back.

I had a nagging worry in the back of my head that my mom really may need to return to the hospital, and that there was just a mixup. I spoke with my mom in the ambulance, and we talked through the various conversations that had taken place. 

My mom asked me to make 100% sure that there was no oversight on the part of the doctor. As we spoke, I thought it was probably best for the ambulance to continue to the hospital, as long as they were on the way. I asked to speak with the paramedic, who said they had already turned around and were right back near the nursing facility.  So I promised my mother I would call the doctor and make 100% sure that everyone was on the same page.  

“I’m really sorry to bug you again,” I said to the doctor, “but I need to make 100% sure that there are no oversights here.  Are you the only doctor who is overseeing my mom’s case today?”  The doctor said yes. “So you were the one who called the nursing facility?  There is no other doctor who called?”  Again, she said yes.

“Can you make sure that there are no recent entries on her chart?”  I asked.  The doctor read the most recent entry to me, which was the exact same entry as when my mother was discharged.

The doctor was very caring and understanding about my concern and assured me that the nurse simply had a hard time understanding her. The doctor theorized that because “blood clot” and “pneumonia” had similarities in their official medical jargon terms, which the doctor had used when speaking with the nurse, the nurse must have gotten confused.  

The doctor also said that usually the hospital does not call to speak directly to a nursing facility about a patient (presumably they just send paperwork), so she postulated that the call had been “too much of a good thing” and had confused the nurses.

Being that…

  1. the nursing facility did indeed seem confused — considering that each nurse I spoke with had a different statement about what was going on
  2. I also had an experience where a nurse at the facility had absolutely no idea what I was saying, despite the fact that I repeated everything about five times in different ways
  3. the doctor I was speaking with was the one who had called the nursing facility
  4. she also was the only doctor overseeing my mother’s case that day
  5. she had just read the most recent report in my mother’s file

…I figured I had covered all my bases and that my mother was fine.

Relieved, I called and informed my mother.  “You’re totally sure?”  she asked.  “Yes,” I said, sharing details of my conversation with the doctor.  So I went to the nursing facility and took my mom out for the afternoon.  I then flew home in the evening, thinking all that was left was that she needed to take the course of antibiotics.

Next thing you know, I was woken up early this morning, with a call from the nursing facility — informing me that the hospital had called again.  As it turned out, my mother was indeed supposed to go back to the hospital yesterday.

This time, I was given the name and phone number of the doctor who had called. I promptly dialed his number. He informed me that yesterday, he had been the one to call, because the radiologist had found air around my mother’s lungs.

I burst into tears.  Twenty four hours had gone by, delaying the response time, plus I was no longer there to be by my mother’s side. What’s more, I had done everything in my power to clarify what was going on. How could this mixup have happened, despite all the precautions I had taken? And when there are so many screwups in the world of health care, how can we trust what practitioners are telling us?


Joyce Wieselmann February 11th, 2009

Hi Loolwa,

Surely, this is crazymaking! What did they ultimately find was causing the air around the lungs? What can or did they do about it?

Is your mom in the hostpital now or back at the nursing facility?



laurie edwards February 11th, 2009

Dear Loolwa,

So sorry all of this is happening–it is so frustrating! It is the worst feeling to face of such raging incompetence.

I hope your mother is doing okay, and that things start to turn around on all front!

Jennifer Hughes February 11th, 2009

Hey my fabulous friend,

I am “inflamed” with anger and frustration – at all of the insane incompetence. It is more than frightening that this negligence goes on and on and on. You are so amazing and so strong and so very competent! You are doing all the right things and more so! I am here for you in spirit and friendship. Keep us all posted on everything. I love you tons! All my love to your mom and her quick recovery and homecoming. XOX Jennifer

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