Question

A Routine Endoscopic Procedure

Our mother usually had an endoscopic procedure every 2 years. We thought that she had too many visits with her gastroenterologist. She saw the gastroenterologist about every 30 or 60 days. When we asked the physician why our mother had to come in on a continuous basis, his response was “acid reflux.” She was taking a proton pump inhibitor for her acid reflux.

Our mother had an endoscopy of her upper gastrointestinal tract in September 2006. The gastroenterologist wanted her to come back in December for another endoscopic test. We did not think it was a good idea for her to have two tests so close together, but she made her own decisions, and she wanted to follow what the doctor recommended. We took her to the endoscopy unit at the hospital for an ERCP on December 12, 2006. An hour and a half after the procedure began the doctor came out and told us that the ERCP procedure was done and that everything looked good. He said, however, that he had to cut her bile duct to relieve the pressure in the biliary tree. We later learned that this was called a sphincterotomy. He said that everything should be okay and to bring her back in 2 weeks. He told us to give her Tylenol for pain.

Mom began regurgitating everything she drank. She was perspiring and was in pain. I called the hospital and told the nurse to get the doctor. The nurse replied that the doctor was unavailable and to give her Tylenol. I told the nurse that she did not understand, that on a pain tolerance scale from 1 to 10 my mother’s pain was at a 9. The nurse kept saying to continue to give her Tylenol—but Mom could not keep the Tylenol down.

The physician called back about 5 minutes later and said to try to give her one Tylenol and some soup. I told him that she was regurgitating and that she could not hold anything down. I told him we needed to bring her back to the hospital and asked that he make her a direct admission so we would not have to wait in the emergency room.

Upon arriving at the emergency room we discovered that the doctor had not made her a direct admission. They did not know she was coming. The doctor had turned off his cell phone as he was no longer on call, and he had not given a report to his on-call colleague. This meant that the emergency room had no knowledge of our mom’s condition nor that we were bringing her in.

A 12-Hour Wait

Our mother moaned and was in great pain in the emergency room. We had never heard her moan before. Dorothy went out to the parking lot and called the doctor from her cell phone. But it was after 5:00 p.m. and he didn’t pick up. The answering service called the doctor’s colleague, who said that she couldn’t do anything because Mom’s doctor would have to be the one to give the orders. But the emergency room never received any orders from him. They did the full workup for abdominal pain, and it took over 12 hours before she even got any pain medication.

The emergency department sent her to her hospital room at maybe 5:00 or 6:00 a.m. the next morning. At 5:00 p.m. that evening, Mother was still vomiting. That was 24 hours of vomiting, and her doctor still hadn’t been to see her. About 9:00 p.m. Mom started going downhill. Her breathing changed. She was struggling for air. Dorothy spoke to the nurse at the desk, who said, “We can’t just give your mother oxygen. We have to get it okayed by the doctor.”

Dorothy was experienced as a medical assistant and she knew what to ask. She said, “Okay, can you give the doctor a call?”

Even so, we did not get the okay until 11:00 or 12:00 p.m. that night. By that time, Mother couldn’t urinate any more, either. The next morning they came and put in a catheter. After they put the catheter in, they elected to move her up to medical ICU. We never knew who gave these orders. No doctor had been to see her.

She stayed in the medical ICU maybe 3 hours. While she was there they put in a central venous line, and then she was moved to the critical care intensive care unit (CCU). We don’t know who gave the orders for that, either. So within 24 hours of admission she was moved from the emergency room to the ward, to the ICU, and then to the CCU. At this time her bloodwork showed that her kidneys were shutting down. Her lungs were filling up with fluid, her pancreas was messed up, and her diabetes was out of control. She just kept spiraling down. They said she had sepsis.

Code Blue

Now that Mom was in ICU, she had a pulmonologist and a kidney doctor, and her gastroenterologist’s two colleagues had also come to see her and looked at the chart. But we still had not heard from the physician who performed the procedure. On the third day of admission, on Friday, December 15, we took our oldest brother and walked over to the physician’s office just before closing time. We asked to speak to the doctor and we sat and waited. We asked him what he had done and what had gone wrong. He drew a little picture of the stomach and esophagus and said that one of her bile ducts had been clotted and he had slit it to allow it to drain. He said that inflammation of the pancreas was to be expected after this operation.

That evening, after the visit to the doctor’s office, my husband took me out to a movie to try to get me away from the hospital. But as soon as I sat in my seat my cell phone went off. It was my 12-year-old son calling from the hospital, and he said that something was wrong with Grandma. It was approximately 10:00 p.m. on December 15.

I called the nurses’ station, gave them my name, and asked if something was wrong with my mother. They said yes, there was a resuscitation code in my mom’s room. I immediately rushed to the hospital and ran up to my mom’s room.

A nurse came out and told us that she needed someone to go into our mother’s room and speak to her to see if she was coherent. They had revived her, but because she had lost oxygen for so long they needed to know if her brain was okay. So I walked into my mom’s room and I whispered into her ear. I grabbed her hand and placed my other hand on her forehead and I began to speak to her. I said, “Mom, this is Anetta. If you recognize my voice, I need you to squeeze my hand”—and she did. I told my mom that I loved her and I quoted her a prayer of faith. I told her that I believed there would be a miraculous healing that night.

The Final Days

The next day, December 16, Mom’s original doctor finally came to see her. By this time she had pneumonia and sepsis and had been placed on a ventilator. The doctor assessed Mom’s stomach, which was very swollen, and said that all the necessary specialists had been assigned. He was still saying that pancreatitis after ERCP was common and that he was optimistic she would get well.

Although she was on a ventilator, Mom was very coherent. She wrote us notes, telling us different things she wanted us to do. She always wanted her back rubbed, and she would want us to bathe her a second time after the nurses had bathed her. Dorothy stayed in the hospital the entire time, and she was very involved in Mom’s care. She read the progress notes in Mom’s chart and made suggestions. She asked them to explain her lab values and gave them a list of her meds. She never left except to get a change of clothes.

On December 27, about 4:00 a.m., as Mom was having a bath she had a cardiac arrest and was coded. Dorothy had gone home to change clothes. The nurse was supposed to call, but she did not. When we arrived and asked the nurse what had happened, she said that when she was suctioning our mom she felt some resistance. She continued to try and suction her as she coded.

Dorothy rushed into the room. She was determined to be by Mother’s side. They worked on Mom for about 25 to 30 minutes but they were not able to revive her. Finally the doctor declared her death. That was it.

Raising Awareness

After Mom’s death, I knew we had to do something. I sent certified letters to the Texas Medical Board, the Texas Department of State Health Services, The Joint Commission, the director of the emergency room, and the new CEO of the hospital, along with the physician who had done the procedure. I sent the letters to everyone I thought could give me answers and raise awareness in regards to our mother’s death. When you bring a patient back to the emergency room from a day procedure, somebody should be ready to take verbal or written orders so that no patient should have to sit in the emergency room for 12 hours.

The CEO of the hospital called me back about a month after Mother died. The hospital was under new management at this time. The new CEO set up a meeting for us with the physician and the CEO to explain what happened to our mom, but the physician declined to come. After a year the hospital sent another letter stating that the physician would now meet with the family. So we finally met with the physician. He told us that he was justified in having done the procedure on our mother, and that without an autopsy there was no way of knowing whether she had died as a result of the procedure or not. We were shocked at this comment. Our oldest sister had been asked privately about an autopsy when Mother died, but had declined. We did not know this would turn out to be so important.

We were very concerned and were not getting answers to our questions about what happened during the procedure and in the hospital. We decided to seek legal assistance to get the truth. We went through about 10 attorneys seeking to file a lawsuit against the physician, the hospital, and the emergency room for the neglect of our mother. And the doctor was right; without an autopsy most attorneys did not want to take a chance on the case. We finally found an attorney and were just 2 weeks short of the 2-year statute of limitations for filing a case with the court when our expert witness backed out and said he could not say without a shadow of a doubt that cutting the bile duct of my mother was negligent. So in the end we had no case to seek legal redress.

We filed a complaint with the Texas Medical Board. At first they found the doctor not negligent, but we won the right to appeal, and I went to Austin and sat in front of 20 board members and physicians of the Texas Medical Board. A year later they again found that the physician had acted within the standard of care in Texas.

Our decision to pursue legal and regulatory action was never about the money. As a family, we wanted the physician to apologize and say he could have done something different. He never acknowledged this.

The Department of Health Services did tell us that the emergency room was cited for the care that was given to my mother on that night, but they said the details were not available to the family. We felt that we should be able to see that information. Due to the laws of our state we were not allowed to have all the information that we wanted and needed to gain an understanding of the events that led to our mother’s death.

Conclusion

Our mother liked her physician and cared for him, but everything that happened to her was directly related to the complications due to his care. Mom did not walk in on December 12 with pancreatitis, she did not walk in with fluid on her lungs, and she did not walk in with pneumonia or kidney failure. This all happened due to the procedure. After extensive research we found that this is what happens when the bile duct leaks into the body: it poisons the body. Could there have been something that the physician could have done to prevent this from occurring?

I would advise patients and families to make sure that before any test or procedure there needs to be effective and honest communication with the doctor. I think that is what really needs to take place between a doctor and the patient and the patient’s family. The doctor needs to talk about the eventual consequences.

1. What were the system failures in Dorothy Johnson’s care?

2. What is the physician’s responsibility to follow up with a patient, and how do you think the reality differs from the ideal? What can healthcare professionals do to make the follow-up process go more smoothly?

3. According to her daughters, even though Mrs. Johnson consented to the ERCP procedure, she did not know or did not understand that the doctor was going to perform a sphincterotomy. In Mrs. Johnson’s case, the sphincterotomy was a nonemergency elective procedure. What does this say about the informed consent process in this case, and how do you think it could have been handled differently?

4. How do you think the problem of overuse of procedures such as ERCP can be addressed?

5. What should healthcare professionals do to communicate with patients following an adverse event? How can hospitals and clinics ensure that there is learning from these events?

6. What can we learn from this case about designing strategies to improve communication with patients and families who are undergoing a medical emergency?

7. Which of the core competencies for health professions are most relevant for this case? Why?

Answer 1

1. In this case it isn’t clear of what happened to Dorothy. But there were many series of system failure. There were issues with communication with the doctor who performed the procedure. The family felt abandoned and that the main cause of death was due to the doctor’s failure to follow up.
2. The physician is highly responsible for the follow up of the patient after ERCP procedure is done. The patient should actually be admitted and monitored. After a couple of days the patient can be discharged and follow up should be done within a week. When the patient experienced complaints of pain and regurgitation, he should have told them to bring the patient and he should have examined the patient.
3. The physician had to do ERCP procedure when performing endoscopy which was not an emergency. After the endoscopy the physician should have explained to the patient and the family members regarding the condition and why and what procedure should be done. If they have understood and agreed for the procedure, the patient should be admitted and routine investigations should be performed and consent should be obtained from the patient and the family members.   After the procedure the patient should be monitored for any complications and discharged according to the hospital protocol.
4. ERCP procedure is now widely overused. It is a significant problem in health care by adding to the cost and burdens the patient. ERCP is often done for diagnostic procedures which is not recommended and it is often performed by physicians who lack sufficient training and experience in performing the procedure and handling the complications. In this case there was no indication for ERCP which shows that the procedure was done for diagnostic purpose and not therapeutic.
5. After an adverse event the health care professionals who are responsible should directly talk to the family members of the patient regarding the complications. The family should be informed about the patient’s condition frequently.