Question

 

A Near-Death Experience

I remember everything that happened that day before the surgery was supposed to take place. I remember rolling into the preholding area. I remember telling the anesthesiologist that I was very uncomfortable about the block. He told me not to worry, that he had done it a hundred times. He will tell you now that he has never said that again. In fact, he will tell you that when he saw the list of things I wanted, his immediate reaction was, “She is going to be a pain.” Today, his thinking has changed to, “This is a patient who has some experience and we need to have a conversation before the surgery.” So his practice has changed because of what happened that day.

From the beginning, I had a bad feeling about this surgery. I had signed many consent forms, but this was the first time I had looked at a form and had the word “death” pop out at me. I don’t know why I felt that way, but when I think back I would say to any patient, “If you have a bad feeling, honor that feeling. It does not matter how crazy you feel, honor that bad feeling.”

The last thing I remember is saying goodbye to my husband. Then we went into the preoperative holding area, and that was where they injected the block. The procedure consisted of going in past the blood vessels into the nerve. To do this they have to pull back on the needle; if there is no blood then they are sure they are into the nerve. But when the anesthesiologist pulled back on the needle there was no blood, so he put the medication in, and apparently it went into the blood vessel anyway. What they think happened was that he did not get any blood because it was a broken-down vessel. Bupivacaine is a cardiotoxic drug and within a minute I had a grand mal seizure followed by a full cardiac arrest. They called a cardiac code and started advanced cardiac life support right away, but after 15 minutes I was still unresponsive.

Luckily for me, there just happened to be a doctor there who had experience with this. He knew that the only way to save my life would be to get me onto cardiac bypass right away. Again, things were in my favor that day: there was a cardiac suite already prepared for another patient, with a cardiopulmonary bypass machine primed and ready. They bumped the other patient and within 35 minutes they had opened my chest and had me hooked up to a cardiopulmonary bypass machine so that the medication could be flushed out of my system.

My husband was not even out of the main lobby before I had the cardiac arrest. He got a phone call from the orthopedic surgeon who had stood by in horror watching the whole incident unfold. The surgeon said, “Mr. Kenney, there has been a problem with the anesthesia. We had to crack your wife’s chest; you need to come in.” My husband just dropped the phone and immediately returned. My husband didn’t know where to go, but a woman from admitting recognized him and brought him into a room. He was left alone in a small room until somebody came to get him. I think about that now. Somebody should have been with my husband.

The anesthesiologist and orthopedic surgeon waited for a while before they came to talk to him. As soon as they opened the door my husband physically went after them. He said, “What have you done to my beautiful wife?!” The orthopedic surgeon’s reply was, “It doesn’t look good. We don’t know what the outcome is going to be.”

When I woke up I was on a ventilator in the intensive care unit. No one wanted to talk about what had happened. Someone told me I had had an allergic reaction to the anesthesia. I knew intuitively that was wrong, so right away, as I lay there in the hospital, I felt unsafe and untrusting. That was not a good mental state to be in after what I had been through. My husband did not want to leave my side and did not want anybody near me; I’m sure he was marked by the staff as a difficult family member. I found out years later that they did not ever ask him to leave. They actually changed their practice because they saw that my husband’s voice helped calm me down. I was the first patient to change this practice.

I remember worrying about my children. There was no support for any of my family members. You could see that the staff felt bad for me, but nobody was talking. My orthopedic surgeon could barely look at me. I remember writing a note asking if he had replaced my ankle. He shook his head and looked down. It took me a good week to grasp that my ankle had not been replaced.

I felt abandoned. I had a rewired chest, broken ribs, and I looked as though I had been beaten up. I remember taking that first shower and having somebody wash me because I could not do it and feeling the most vulnerable I had ever felt in my life. I got my chart before I left the hospital and it said right on the front, “Allergy to PENICILLIN and BUPIVACAINE.” That was the route they were going.

Alone at Home

When I left the hospital, I received instructions on caring for my incision and information about a visiting nurse. That was all. I never got a phone call. All I got was a bill. I had had many day surgeries when they would call me the next day and ask how I was doing. This time they almost killed me and I didn’t even get a call.

A week after I got home I received a letter from the anesthesiologist, Dr. van Pelt. I did not know that he had tried to see me several times in the hospital, but that multiple things had stopped that from happening. In the letter he said he was sorry for what had happened and that he believed in open and honest communication. He gave me his home telephone number and cell number. I had no idea that what he was doing was so ahead of the time. My feelings at the time were that this was damage control. I filed the letter, and did not think about it for a long time.

When I got home, Christmas was coming. My kids were all still reacting to what had happened. I was trying to take care of their needs, and I was physically very limited. It was a slow recovery. At the time, I coped by focusing on being thankful to be alive and taking care of my family.

A couple of months later I was feeling better physically. My family and friends thought I had moved on, but I know today that I had not yet processed my emotions. Then, while at a wake for a 14-year-old child, I began to feel guilty. I felt guilty that I got to live and this child had died. It was like the floodgate opened, and every feeling I had been pushing down just came out. I began crying and felt as though I was never going to stop. I remember crying over folding towels. I just felt isolated and alone for months.

I needed a cortisone shot in my right ankle due to severe pain because I had not had the ankle replaced. I made an appointment to see my orthopedic surgeon. I went in and told him that I thought we should talk about what had happened. His entourage left the room and he told me what the day was like for him.

He said, “That day is burned in my memory like the birth of my children, although those were joyful occasions and this was not. Linda, you are a miracle.” By that time everybody was telling me I was a miracle and I did not believe it. He said, “No, Linda, you are a miracle from God,” and he began to cry.

My first reaction was, “What? What are you doing?” But then compassion came over me and I looked at him in a different light. I felt bad for him. It was the first time that anybody had showed me that they cared and that this had had an effect on them, too. As the patient, I needed this. It really made me feel better to see this reaction, but almost at once he stopped the story and would not finish. He got up, walked to the door, and left.

A few days after this meeting I called the hospital to ask if there were other patients I could talk to who had gone through this same thing. I knew I could not be the only one and I needed others to talk to. They never called me back. Months later I called my orthopedic surgeon again and asked whether he thought it would be reasonable for me to invite Dr. van Pelt for coffee. That was when I found out that Dr. van Pelt was no longer in Boston. I felt as though the floor had dropped out from under me. I thought I had missed the opportunity to ever hear the anesthesiologist’s perspective and get closure on our shared event.

Luckily for me, the orthopedic surgeon was very proactive. He reached out to the head of anesthesia department, who contacted Dr. van Pelt. This ultimately led to my phone conversation with Dr. van Pelt, which was wonderful for me because I got to hear how affected he was. I felt as though I finally had gotten to hear the truth from somebody.

I was the first person who had asked him how he was doing. This struck me as so odd. Eventually I met other people who had been on the code team and all they could do was cry. I remember meeting a nursing supervisor who had been taking care of the patient next to me and I told her I often wondered how the other patients going into surgery dealt with seeing this scene unfold right in front of their eyes. She said that for the people who stayed overnight, she went up to see them in their rooms. She took it upon herself to do this all on her own.

I called the hospital and told them that I could not read the writing in the chart, but that I would like to know who everybody was on my code team because I wanted to write them a letter. It was coming up on my 1-year anniversary and I really wanted to thank them for doing their job. I knew that for them it was just their job, but I wanted to articulate how this had affected my family and me and what it meant to us. I never got a phone call back. I have been told that they were just waiting for the lawsuit. The culture at the time was not to speak to anybody involved in a serious adverse event, but I did not know this.

Moving Forward

After a year I wrote a letter to the administration. I said that patients left their facilities all the time after something had gone wrong and asked why we were not supporting them. I offered to help them make the change. I received a letter back a couple of months later. It was very cold and written in legal terms. It made me so angry, I wanted to lash out and hurt them back. I remember thinking, “Now I know why patients sue!”

Then, finally, nearly 2 years after the event, Dr. van Pelt and I met. I was finally able to put a face to the man who was part of an event that had such an impact on my life. We had shared this extremely emotional event and I didn’t even know what he looked like. By this time I had met a number of clinicians and I believed the system had failed us both. I wanted to change that. I remember telling him I wanted to start an organization, although at the time I had no idea what it would look like. MITSS—Medically Induced Trauma Support Services—had a brainstorming brunch in April of 2002, and Dr. van Pelt was one of the many invited guests. This was where we developed the mission of MITSS and ideas for how we would carry it out. Dr. van Pelt was one of the first board members of MITSS.

I was so naïve; I really thought that if I started this organization all the hospitals would send us the people who needed our support. I was so wrong. Three years to the day after my adverse event, I scheduled an appointment with the risk manager of the hospital. I had MITSS brochures and I was going there to see if she would give them to all her patients and family members. I left early, all ready for the meeting, and after I left she called the house canceling the appointment. So can you imagine the look on her face when I showed up? But we have become good friends, and she tells me now that they did not know what to do. They did not know what I wanted. They assumed I wanted something, but all I wanted was to be part of a solution. They could not comprehend that. It has taken years for me to build credibility with this hospital. What struck me was that if we are not acknowledging that these events happen, not doing disclosure or apology, then how can we get to the support piece? It has been a journey. I am now starting to see some progress, but it has been slow.

The institution finally made changes and promised to put our brochures throughout the hospital. But when I would go in, I would find our brochures on the shelves in the closets. Then Dr. van Pelt and I had our pictures on the front page of the Wall Street Journal and suddenly it was a different game. After this publication, I had the opportunity to meet with the hospital, and we were given office space at the hospital. Once I began to learn what the challenges were for the medical community we could look for solutions together, because sometimes they just didn’t see them. They needed the patient’s perspective. It has been a rewarding partnership. I wish people would take the opportunity to embrace their patients when things go wrong because amazing things can happen.

Conclusion

Seven years after the incident described in this chapter, Linda Kenney had her long-postponed ankle replacement surgery. While every effort was made to allay her and her family’s fears before surgery, postoperatively she developed a surgical site infection that required rehospitalization and intravenous vancomycin antibiotics. After more years of acute issues and breakdown in the replaced ankle, Linda finally had the ankle replacement removed and a total ankle fusion in 2014. Her nonprofit organization, MITSS, has continued to grow during this time. It is now entirely consumer-led and is a leading source of information on supporting patients and healthcare professionals following medical harm.

Questions

1. How much of a problem do you believe the policy of not disclosing errors to patients might be? Can you envision circumstances in which this would create ongoing problems for patients and their families?

2. What adverse effects have you seen on clinicians who were involved in a medical error? What do you think could be done to alleviate these adverse effects?

3. Research some of the full-disclosure programs that have been developed and discuss their major components. What barriers do you see to provider disclosure following error? How do full-disclosure programs overcome the barriers to transparency that exist on both sides?

4. Much of this story is a lack of compassion in health care. Do you think there are forces that discourage compassion in day-to-day dealings with patients? If so, how do you think they could be overcome?

5. Which of the core competencies for health professions do you think are most relevant for this case? Why?

Answer 1

1)It is the most difficult situation where the doctors have to decide whether to report to the patients about the medical error which happened . Even though most of them them believe that this should be reported, but practically they are not reported for several reasons,as a result most of the doctors and hospitals cover up their errors which can have a long term effects on the patients.

Some of them can be the outcome of the hospitalization where the patient doesn't know what has actually gone wrong for example here the patient was admitted for an ankle surgery but ended up in a grave condition for an error which was unpredictable. It is common to make mistakes as everyone is human but then rectifying it would ease the situations.

Another, is the prolonged stay unexplained to the patient and even if it is explained it is not up to the patients queries.

Increased expenditure,severe anxiety and emotional trauma are also an end result of an error.

Not only the patient but their family can also become stressed and agitated without sufficient explanations to why theory have to face such problems .

2)Clinicians who are involved in a medical error are obviously affected in some or the other way. The failure to report are also due to the tremendous fear of the law and future outcomes but however they are adversely affected . Depression, fear, guilty, feeling upset, self critical etc . These impact on their professional and personal lives which can hamper their quality of life.

To alleviate this:

The institutions must ensure that these physicians are not over burdened ,burn outs can lead to medical mishaps

The government must check the work safety protocols for doctors to prevent them from being over burdened and stressed.

There needs to be an initiative to provide adequate support and flexibility in the work practice.

Counselling can also be considered to help these clinicians.

3) The major components of disclosure program are:

1) Admitting to the patient that there is an error.

2)Discussing with the patient regarding the event of an error.

3)Explaining the effect of the error which can possibly happen in a language that the patient can clearly understand.

4)Explaining the effect which has already caused due to the error.

5)Explaining the possible harm the error can cause

6) Explaining the harm which has already caused due to the error.

Barriers to these are:

A) Legal consequences which can refrain the physician to disclose.

B) Inability of the patient to understand and becoming anxious.

C) Lack of support from the institutions and government.

D) The chances of hiding such situations by the hospital as it can affect the reputation of the organization.

But however full disclosure programs have several benefits for both the sides:

1) It ensures the protection of right to information of the patient where he can take his decisions

2) It can protect him from negligence and harm.

3) If an error has occurred this information can help him to be psychologically prepared and reduces anxiety as he can understand that prolonged stay is for the well being of the patient and thus would not feel that the hospitalization is unnecessary.

4)For the doctors it gives them to strengthen their relationship with their patients and gain their confidence because ones the doctors disclose an error and offers his help the patient will be more willing to cooperate .

5) Eventually the dreadful outcomes of errors can be avoided.