Oct 01, 2009

Claire's story

It was mid-afternoon on postoperative Day 13, and “quiet hour” in the PICU. Things were unchanged, still critically unstableonly one system involved. Parents are not usually permitted in the PICU at this time of day, but I was sitting by my daughter’s bed. No one had come to remove me. Maybe they felt bad for us; we had already spent many hours away from her that day during rounds and while a chest tube was being inserted. 

I had an “aha” moment: Claire may actually die in here, she may never open her eyes again. But I immediately switched to the familiar, practical and prepared mode that had sustained me for the last 9½ years: Well, if Claire is going to die, I’d better tell her about heaven, just in case, just on the off chance such a place exists. After all, my family and I had long guided Claire through events and expectations by using simple explanations.

The oscillator beat loudly next to me and the beeps from the many drips that were keeping her alive were steady. I removed the earphone that was playing her favourite music. Two nurses looked on as I squeezed in between the oscillator, the bed and the chest tube. I put my mouth up close to my little girl’s ear. I am grateful to those nurses who allowed me to stay with Claire that afternoon and explain what heaven was…just in case. Three days later we consented to withdraw the ventilator that kept Claire alive, and she died.

THE ROAD LESS TRAVELLED

Claire was diagnosed with Trisomy 13, or Patau’s Syndrome, in the months following her birth. It is a life-shortening syndrome. We discovered through an international support organization that not all children with Trisomy 13 die young and that the presentation for each child is unique. The future was uncertain but we were “good to go” with what lay ahead.

At the age of nine, Claire was considered a long-term survivor. She had severe global developmental delay and was completely non-verbal, but she understood most of what was said to her as long as the concepts were basic and familiar. When she was in the mood, she used pictures to communicate. She required constant supervision and 24-hour care, but she was medically healthy. She rarely missed a day of school. Our goal was to keep her safe and happy, and we took great care in doing just that. We vowed to see Claire’s life through with her. We often wondered how her end would finally come, but never thought it would play out as it did in the PICU.

NAVIGATING THE PICU

In fall 2006, Claire’s doctor noted a scoliosis of 13° on an X-ray. At home, Claire seemed to want to walk less and less and began to have trouble swallowing. The next fall, an MRI of her head and spine was done. The scoliosis had progressed to 46°. A Chiari I malformation was diagnosed. Her spine was disintegrating. The Chiari I had to be surgically corrected or paralysis would spread.

Our PICU journey began. Claire had multiple behaviour problems and we, like her trusted neurosurgeon, felt that her habit of head banging when agitated could seriously hinder her recovery in the immediate post-op period. The intensivist and anesthesiologist were consulted. It was in Claire’s best interest, it was decided, that she remain sedated, intubated and ventilated in the PICU for at least seven days. After a successful neurosurgical procedure, and several wonderful hours of apparently good health, judging by sensor readings and appearance, Claire developed pneumonia and, according to one intensivist, acute respiratory distress syndrome (ARDS).

During those 16 days in the PICU, our emotions took a wild ride with stops at relief, disbelief, uncertainty and heartbreak as Claire’s condition worsened, got better and worsened in cycles. Within the first 48 hours, the No Code conversations began. Again and again, quietly and loudly, publicly and privately, over and over, I confirmed to the medical staff that yes, Claire was a Full Code. Of course she was a Full Code! We were incredulous that anything less was being considered. Our wishes were obvious and simple: We want Claire’s treatment plan exhausted. We need to be kept informed every step of the way, and we will decide together if it is time to stop.

It was accepted practice in the PICU to move parents from the bedside to the other side of the locked door during multidisciplinary rounds, shift changes and invasive procedures. We were often denied entrance to the PICU when Claire’s condition suddenly worsened. We would sit on the floor and wait for permission to enter once the team inside the unit had a handle on what was happening. We were always allowed back into the unit, but we did not feel that we were ever fully invited into the difficult and complex conversations about her care that took place in offices, behind closed doors and at her bedside when we weren’t there.

Claire needed all that the PICU had to offer, but she also needed us to be her voice. We had expected to be partners in Claire’s care. We understood that decisions in critical care environments are often based on probabilities rather than certainties, and we would have put stock in the physicians’ thoughts and opinions. But they were selective in what they shared with us. Maybe they were afraid that we would not understand. Maybe they worried that acknowledging the uncertainties would undermine our confidence in their abilities. That would not have been the case.

REVELATIONS AND REACTIONS

One of the intensivists who cared for our daughter felt that Claire’s tragic and unexpected course through the PICU was somehow related to Trisomy 13. I suppose there is some truth to this; we wonder if those who worked so hard to keep Claire alive derailed those efforts by falling into the trap of labelling her. Claire acquired a number of dangerous labels in the PICU: ARDS, Trisomy 13, No Code, Do Not Resuscitate. And Futile may have been another of the words on that list. Tragic decisions about Claire’s care were made because of these labels. But assigning them might have been easier than grappling with uncertainty about what to do or to say next.

At the time, we believed we had an excellent transparent relationship with the PICU staff. After Claire died, we sent thank you cards to them, and we publicly acknowledged their efforts. We hung a picture of Claire on the memory wallin the PICU to mark her time there. The caption read, “Well cared for in the PICU for 16 days.” This was how we very much wanted, and needed, Claire’s story to end.

But we had questions. There were events that did not sit right with us. Two of the intensivists were patient with us and answered our questions as best they could. But ultimately, we still had concerns. The health region brought in a team of out-of-province reviewers to examine Claire’s time in the PICU. The revelations were shocking. We learned that Claire had not been cared for in the manner that we expected or that she deserved. The PICU staff were hurt and angry that we could not accept that everything medically possible had been done — what more could we have wanted? Why were we seemingly so ungrateful? Being a nurse, shouldn’t I have understood the limits of medical intervention? I too was hurt and angry. Why couldn’t the PICU team see me as a mother driven to understand why her daughter died so unexpectedly on their watch? Why couldn’t they understand that I was a mother first and a nurse second? Didn’t they want to understand the mistakes that had been made and to learn from them? Claire’s journey and death in the PICU metastasized into a mass of indignation and denial. A nurse removed Claire’s picture from the memory wall. Already devastated by our daughter’s death, we now had to cope with the review findings and the reactions of the staff we had trusted so completely.

We received three formal apologies — all from nurses — for the mistakes and deficiencies in our daughter’s care. The first came from the director of the program, on behalf of the health region. Her sadness and regret were sincere, and we accepted her apology. The second came from someone who had spent many an hour at Claire’s bedside, working hard to keep her alive. Her tears flowed freely as she expressed her regret for any involvement she might have unknowingly had in our daughter’s death. As I listened, I thought of this nurse’s courage. Would I have been able to apologize in this way if the situation had been reversed? I hoped so. I found myself thinking how privileged we were to have had her care for Claire. The third apology came from the woman at the helm, the chief executive officer of the region. All three of these individuals understood that we cannot go back in time; we can only look back from where we are now. But they knew that the apologies were necessary so that everyone would be able to move forward.

LESSONS TO LEARN

Nurses and physicians understand little about the grief of parents that follows the death of a child. Few have received any formal training in parental bereavement and in how to help those who are still living. In our case, the staff were completely overwhelmed with emotion, ours and theirs, and felt it best to leave us alone — the safest option for anyone who really does not know what else to do. We need to do better.

The apologies meant a lot to us. But it has been the examination of what went wrong and how improvements can be made in the system that are more important. Vast changes have since occurred in the care delivered at the bedside in this particular PICU. Such changes always take time, patience and effort.

I wanted to share this story because I believe nurses, physicians and others involved in health care can learn from our experience. Those who truly care will want to understand what really matters to families on the other side of a locked door — and will want to do it better with the next child, with the next family.

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https://www.canadian-nurse.com/en/articles/issues/2009/october-2009/claires-story