Recently, I was interviewed by a local news station about school policies concerning children with DNR's. Macayla had a DNR while she was going to school. From my understanding at the time of interview, the school district wanted a policy in place that did not allow them to enforce or enact the DNR during a crisis requiring life-saving measures. In other words, they would perform life saving measures until EMS or other medical professional arrived. I later learned that the real story was the school district wanted a policy that they were not responsible if the DNR was not passed on to medical personnel such as EMS. This is another issue entirely.
When we signed a DNR for our daughter, it was because we knew the prognosis. We knew interventions would not change the ultimate outcome. So we had to decide which interventions to make and which ones we would not make. We certainly did some interventions. Our daughter had a feeding tube and we utilized suction and pulse/oxygen monitoring. I know some may not consider these as "interventions" but that is exactly what they are. Without them, she could have died much earlier. Some children may need oxygen to supplement breathing, some need tracheotomies, others intubation. Each family must decide for themselves what is best and families can change those decisions over time with progressive or dynamic conditions. The DNR gives the option to families to stop interventions if they know it is what's best. Having a DNR does not mandate a family can't intervene, but it gives that option when the situation warrants it.
The fact is, at least in our area, neither the school district nor EMS will honor the DNR if life saving measures are called for on someone under 18. In our situation, I would have preferred that to allow me time to get to our daughter and assess her. What may look like "the end" to someone else could have been a "normal" or reoccurring issue with our daughter that can be managed. But we knew better than anyone else what that looked like. So, if EMS beat me there, I had no problem with them implementing life-saving measures. We wanted to make sure that we had the option, legally, to not intervene when our daughter reached a point where the interventions did not give her quality of life. Remember, her prognosis was fatal. Interventions would not change that and we wanted to avoid, if possible, the intubate/extubate roller-coaster. Again, I'm not saying it is wrong to intubate or intervene. We just wanted options. We wanted to be aware and assess if interventions were going to be more for Macayla's benefit or ours. I also believe there is no ethical difference in a situation like ours between withholding interventions and removing them later once the "hospice" process began.
With all this said, I believe the school district and EMS should be required to relay the information that a DNR is in place even if they do not enact it. The hospital needs to know it. It is pertinent medical information just like allergies, medications, and diagnosis. I believe the school district cannot excuse themselves from passing on this information and really there is no reason for it to be an issue, especially in our area. The number of children who are attending school with a DNR is such a small percentage that there really is no logistical challenge with keeping up with this record just as they keep up with medications and doses. I also suggest that parents keep a copy of the DNR with the child's go bag or wheelchair. The DNR can speak if the parent is unable to due to injury or death. Also, if something happened to us, it communicated our general wishes to grandparents who would take over Macayla's care.
Again, each family must choose what is right for their situation and child. We were fortunate and did not find ourselves in PICU trying to make these decisions. We were able to be with Macayla at home and be with her. She went to her eternal Home when it was time and we know that even PICU would not have been able to stop that. I pray for all the families facing these impossible choices.
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