Patients should keep their own notes

Posted by Wirt Brock | Mar 15, 2022 | 0 Comments

Several years ago, we won a significant medical malpractice verdict for our client against Kaiser Permanente and one of its oncologists.  The case was primarily about Kaiser's oncologist's failure to listen to her patient when the patient reported she felt pain and a lump in her chest.  Although this lump turned out not to be malignant, it grew over time to the point that taking it out had catastrophic consequences for our client.  As you can imagine, core issues in the case were: 

  • what did the patient tell the doctor about the lump, 
  • when did she tell her about the lump and 
  • would earlier intervention have helped.  

This case was extraordinarily difficult for many reasons, but we didn't have to worry about what or when my client told the doctor about her lump because, as you will see below, our client had been taking and keeping her own notes.  

In 2010, our client received her first test results suspicious for breast cancer.  Around that time, before the biopsies, before the double mastectomy, Kaiser sent her a letter to reassure her about her prognosis and introduce her to the oncology practice.   In this letter, Kaiser advised her that she likely would have many questions in the years ahead and recommended she write down those questions so she would remember what she wanted to ask her doctors during what was sure to be a busy trip to the clinic.  Our client took that advice to heart and began writing down lists of observations and questions for her doctors.  

These lists were occasionally typed-up the night before, but sometimes, our client would write them down quickly, on a napkin or receipt while sitting in the waiting room.  On several occasions, while responding, the doctor wrote down information or drew on the lists of questions.   This helped our client feel like she was being heard and that her concerns were being addressed.  She also saved these lists of questions, along with all the documents she received from the clinic, in a notebook.  

In 2012, after recovering from her double mastectomy with reconstruction, she noticed chest pain and a small button-sized lump near the implant.  As usual, she wrote down her questions about chest pain, the small lump, and possible further diagnostic procedures.  At her next appointment, she asked about those things.  Her oncologist reassured her that there was no breast tissue after the mastectomy and that the lump must be scar tissue or something of no concern.  Further diagnostic tests were not necessary because it can't be cancer.  

“Great,” our client thought.  But the lump didn't do away.  Terrifyingly, it seemed to be getting bigger.  Over the next eighteen months, at each oncologist appointment our client brought in her list of questions and shared her concerns about chest pain, the lump and next steps.  She was always told the same thing: no breast tissue; must be scar tissue; can't be cancer; no diagnostic tests, don't worry.  

Finally in January 2014, our client refused to leave the doctor's office until a diagnostic test was done.  Her oncologist initially did not think a diagnostic test was necessary and scheduled a follow-up appointment six-months later, but eventually, reluctantly, ordered an ultrasound.  The ultrasound detected a large mass overlaying a portion of our client's sternum and three of her ribs.  MRIs were ordered.  Catastrophe!  Although not metastasizing, the lump was eventually determined to be a large desmoid tumor that had grown to the size of a lime.  

After it was taken out, she was left with a large chest wall defect (11 cm x 7 cm) that is covered with surgical mesh.  

We requested Kaiser's medical records.  For each appointment from 2011 until 2014, the oncologist's notes were about five-pages long.  Of the five pages, approximately 2.5 pages was the copied and pasted pathology report from Plaintiff's original breast cancer diagnosis in 2010.  Of the rest, Kaiser's oncologist held out about one-half page as her newly created notes to memorialize each follow-up appointment.   At the oncologist's deposition she was asked to mark what portions she copied and pasted and what she typed up new at each appointment.  She insisted that the only copied and pasted portion was the pathology report and that the rest was typed new by her during or soon after each appointment.  

At trial, we proved that contrary to what Kaiser's oncologist said under oath, the overwhelming majority of her notes were copied and pasted.  Word for word; typos included.  She would infrequently add short updates in, but nothing was taken out.  Most importantly, Kaiser's oncologist did not bother to write down her patient's complaints of chest pain and a lump for eighteen months, or until January 2014, when it was too late.  Even at that point she made the records look as though the patient only recently noticed the chest pain and the lump.  

If my client had filed suit without her own, personal notes, the doctor would have pointed to her own medical records that did not include the patient's complaints and said, “look, she never told me about chest pain or a lump because it is not written down in my notes.”  What would have happened then?  Our client would be left with a hole in her chest and an empty bag filled with the doctors false reassurances.  Instead, my client was keeping her notes and her questions and could prove that she had brought up her symptoms to her doctor.  

A similar failure to diagnosis cancer malpractice case was recently settled in Virginia for $900,000.   This is a fantastic outcome for a 35-year-old mother who complained of a lump in her left armpit to her OB/GYN and again pointed it out after it grew larger following the birth of her child.  Tragically, this young mother is left with stage-IV breast cancer that wasn't diagnosed until 15-months after she first brought it to her physician's attention.  Although I was not involved in this case, it appears from reports that there was a factual dispute about what and when the young woman told her physician about the lump because the doctor did not write down his patient's complaints.  

Patients being harmed by medical errors is not a new phenomenon.  For instance, in 1999, the U.S. Institute of Medicine, Committee on Quality of Healthcare in America published a report entitled, To Err is Human: Building a Safer Health System.  It begins, “[t]he title of this report encapsulates its purpose.  Human beings, in all lines of work, make errors.  Errors can be prevented by designing systems that make it hard for people to do the wrong thing and easy to do the right thing…In healthcare, building a safer system means designing processes of care to ensure that patients are safe from accidental injury.”  This report estimated that as many as 98,000 people die each year from medical errors.  If this is true, then more people die each year from medical errors than from car accidents, workplace injuries, breast cancer or AIDS.  

The two malpractice cases related above are concerning because they stem from the same source:  doctors not listening to their patients and/or failing to write-down their complaints.  How do we design a system where doctors listen to their patient's complaints and write down what the complaints are?  Isn't the system already designed that way?  

Although these are only two anecdotes, it is worth remembering: you cannot always count on your doctor to think what you are talking to them about is important enough to write down.  This seems especially so in relationships that go on for many years.  If you are experiencing a symptom you believe to be important, write it down.  Date it.  Make a list of your questions and observations so you remember to ask your doctor.  Then when you get home, save your list of questions just in case your doctor is one of those who copies and pastes her notes, doesn't write down her patient's complaints or is otherwise not paying attention.  A future malpractice case may depend on it.  

Keep in mind that it is also important to do what your doctors are asking you to do.  Doctors generally want to help their patients feel better and have no continuing problems.  Make sure you return for follow-up appointments.  Participate in prescribed therapies.  Take medications as prescribed.  Be honest when you tell your doctor if you are having a problem.  Be specific.  You and your doctor need to have a relationship of trust built to address your medical problem to help you get, and stay, healthy.  

About the Author

Wirt Brock

Litigation can be a time intensive, expensive and risky endeavor. Before you take on that type of burden I will work to ensure that you fully understand the risks and potential benefits of going forward and will help you make sound decisions to preserve your rights.


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