Annie's Story: Part Four - Discovery

The events surrounding Annie's death played again and again in my mind. I couldn't turn them off.

Still, something nagged at me. First Annie's trachea was fine and she had pneumonia and then 24 hours later, she didn't have pneumonia and her trachea was not fine. How could that be? Three physicians in the ER had looked at the x-ray and made the determination of pneumonia.

I told a friend that I thought it was possible that the three physicians had all looked at the x-ray, saw no evidence of pneumonia, only a severely narrow and collapsed trachea and agreed, "looks like pneumonia". In other words, I considered that the option of not offering surgery to a child with Annie's genetic condition was unanimous and did not require discussion. My friend said "Those are crazy thoughts. Such a thing could never happen".  I agreed and yet it was the only thing that was logical.

 I obtained a copy of the Health Care Consent Act . Thus began my journey of discovery of the healthcare system. It is complex and immense. I had no idea what the College of Physicians and Surgeons was, but that is where you can complain about a physician. Little is typically done by way of discipline by the College but a complaint is a very difficult and distressful event for most physicians.

We ordered the medical records. Records are legally accessible to any patient and can be obtained through the hospital. Annie's records were massive and may as well have been written in French. I didn't know where to begin. I tried very hard to move on and let my concerns go but it was impossible. Despite conscious reason to the contrary, my instincts told me something was wrong.

By sheer coincidence, we met a nurse with over ten years experience from the same Critical Care Unit. I told her that we were very uneasy about what happened. She offered to look at the records from the last day for me and told me that she was sure that my concerns would be resolved by an explanation of the events which occurred.

After two hours of reviewing the records on her dining room table, she turned to me and said, "I'm sorry, but what happened wasn't right". All that I knew to be wrong at that time was that a "do not resuscitate" order had been entered into the records before the final consent was acquired.

This revelation resulting in the most intense and hurtful violation that I have ever experienced. It felt like we had been declared incompetent and our rights removed, without benefit of judge or jury.

We had a friend who is a nurse practitioner review the records. We were very upset by the information he provided to us after his review.

Questionable IV fluids were administered in the ER and it appeared that Annie did not have pneumonia as I had suspected. The blood work did not reveal infection and the records stated, "good bilateral air entry" and "no consolidations." These are indications that the acute respiratory distress was not related to pneumonia.

The records showed that Annie had been bagged (resuscitated) for 1.5 hours and our friend said that this is not supposed to happen. He said when a patient is being resuscitated there is a rush of nurses and doctors trying to stabilize the patient and transfer them to the Critical Care as soon as possible. The patient is not left alone with the respiratory therapist for an hour with the family standing watch. He said that he thought the intention was likely that we would see Annie suffer and come to our senses and tell them to stop resuscitating and to let her die.

These words, this possibility, hit me  as if I had been struck. I asked him why we would tell anyone not to save Annie's life when we thought she only had pneumonia?

A nurse had given a sedative to which Annie had a sensitivity even though we had  warned the Critical Care staff that medications like this could cause her to stop breathing. There was no doctor's order for this medication.

The final medication report was missing. No medication was shown to be given over the final 3.5 hrs of Annie's life although medication was due to be given and I recalled the nurse giving her medication in the final hour of her life.

There was no apparent sign of organ failure. Annie had good perfusion to the end which means that her heart was able to pump blood to all of her extremities. The final oxygen saturation number, one hour before death was 97% After that, the data disappeared. 

We thought that there must be an answer to all of these issues. We could not believe what the sum of all of these events was telling us.

After much effort and  editing by many people, we wrote a letter to the hospital with our questions. We requested that the answers be provided in writing because we believed that our verbal communication had clearly not been effective in the past.

This request was denied but the hospital offered to meet with us. We were told that the physicians would need to show us x-rays to fully answer our questions and so we agreed to meet.

When I reflect on the meeting, I am embarrassed by how naive I was about how the system works and about medical culture in general.

A family physician-friend of ours, Annie's final two physicians, the Chief of Critical Care, director of Critical Care and representatives from bioethics and genetics attended the meeting. The role of the bioethicist in a hospital is to help people to make decisions that are right from them. Most of these decisions relate to end of life issues.

We had met the bioethicist before Annie was born and we liked her very much. She had assured us at that time of the policies which existed for babies like Annie. It seemed that her services to consult or intervene on the final night of Annie's life were not utilized when they most definitely should have been.

We showed the physicians a slide show that my oldest daughter had made about other children with Annie's condition and about Annie. It was accompanied by music.

After that, my husband read a prepared statement about our perspective and position with respect to Annie's genetic condition and our choice to give her a chance. He read that we had collectively failed Annie somehow because she had suffered and died a terrible death. We questioned the medication issues, the delay to transfer to the Critical Care and DNR order without consent.

We expected a forthright and honest discussion and perhaps an apology for poor communication. We expected that someone would show us an x-ray and tell us how Annie died or how her death was imminent. This did not occur.

We left the meeting with more questions and concerns than we had when we arrived.Key statements made when Annie was alive were forgotten or denied and answers regarding medication issues were vague.(they were still looking into it) The intensivist said he based his diagnosis of the severe and very rare tracheal condition on "experience".

At the completion of the meeting, I told everyone that the issues were not resolved. I said we could not find an excuse for each event such as the misdiagnosis of pneumonia, the delay to transfer to the Critical Care, the silencing of the alarms, the medication violations and the DNR order without informed consent  without considering the message the whole picture was telling us.

The doctors shook their head as if I didn't understand and left the room.

My oldest daughter had also attended the meeting and like a good student she had taken copious notes. We went home and immediately filled in the gaps in her notes from our collective memories and notes. We promptly prepared minutes of the meeting for immediate distribution.

Our Primary Physician had told us weeks earlier that he would be happy to speak with us at any time. After the meeting, I decided to try one more time for an explanation. I wrote to him about my concerns. I received a prompt reply telling me that he was confident that his medical decisions were consistent with our choices and Annie's rights and that he regretted the deterioration in our relationship. He wrote that future correspondence would be the with the Chief of Critical Care.

If there was an explanation, why didn't he provide it?  

It would take another two years before the entire truth about Annie's medical care was revealed.  This was when we had an expert medical review done by a physician who is board certified in neonatology and paediatrics. The review was over 60 pages in length and included charts, graphs, timelines and chronologies. No stone was left unturned.