I'm at work, entering data into an Access database. It's not very difficult, and it can be a bit soothing to enter data. I don't have to think too much. But entering this data always gives me pause. I'm entering the data that represents a child, a child who progressively became sicker and sicker, and ultimately -- always -- died at the end. Entering this data makes me feel... strange. Sad. Grateful that I have a healthy child. Sad for the families that have to go through this. Amazed and so appreciative of the folks who work in this field and do this work every day.
Even after four years, it's hard for me to talk about the study I'm working on. Improving end-of- life care in the pediatric ICU. The study is about making the end-of-life experience better for very sick kids and their families. True, this is a very small minority of kids. Most kids get sick, and get better. But some kids -- 55,000 a year in the U.S. -- don't. And most of these kids die in the PICU. So here I am.
I start out typing in very basic information. The child's date of birth. The date they entered the hospital. The day and time of their first vital signs. Often, these children are very young. Often, they enter the hospital soon after birth. These are the kids with very serious birth defects: problems with the heart, with the digestive system. Sadly, some of them never get to see the world outside the hospital. This is where you start to think about quality of life, for the child, for the parents. Does it make sense to keep them alive for a few months in the hospital, only to die a few months later? Is a few months of life worth the pain and discomfort that the baby experienced? The parents? No easy answers.
The next page has information about the diagnosis. Often I don't understand these, but sometimes I do. Kids in the PICU tend to have serious diseases. Usually chronic diseases. Cancers, genetic issues, cystic fibrosis, muscular dystrophy. Occasionally, there is something acute, like a car accident, a drowning, being hit on the head.
Next page is about the involvement of different care givers, such as social workers, chaplains, and so forth. Most of the time, there is support offered by some of these services to the child and the family. This seems like a good thing to me. After that, there is a chart that lists the different family conferences that took place. These are interesting because they tend to follow a progression: at first, the family and the doctors discuss the prognosis, and decide to continue supportive care. The next day, they consider withdrawing or withholding treatment. And finally, they decide to withdraw or withhold. One thing that I've learned from working on this project is that the acceptance of a child's death is a process. Parents need to see that everything that can be done, has been done, and if they see that and see that their child is still not improving, then they can start to consider the end.
The next pages deal with all the possible interventions that a child can have in the PICU, from differing types of feeding, hydration, medications to bring up the blood pressure, different types of mechanical ventilation, and different medications that relieve a child of pain. It's interesting to see that, again, this tends to follow a pattern. The child often receives lots of interventions at first, and as the days go by, they tend to drop off.
There is a question called "ability to communicate" and most of the time, the child in the PICU is comatose. At least they aren't aware of what is going on. Most of the time, they aren't feeling pain at all, either.
The final page describes the child's death. Who was with them, was there an autopsy, was there a decision for the child to be considered as an organ donor, did the donation actually happen? And that's it. The chart abstraction is over.
Another child has died. Another family is crushed. I exit out of the chart. And sigh.