Most parents will never have to think about how they want their children to die. Most parents will die before their children will.
But then it is us. The community of parents who have children living with life-threatening diseases. We who know that we can loose our children any night. We who know that a cold can turn into a life-threatening pneumonia. We who know that a seizure can take our children's lives. The list of threats to our kids' lives are long and scary.
And then we have families where that tragic accident happen, and life and death is the only thing on the table. Decisions that never should have to be made by a parent about their child has to be made. Often without enough time.
And that is where DNAR (Do Not Attempt to Resuscitate) comes into play. A pink document that you can decide to use as a parent to decide on what specific life-sustaining therapies you want for your child at end-of-life. It is a living document that can be changed at any time. It is a document that protects you as a parent in case your child dies in your home. It protects you from being a suspect in your child's death.
Recently, I was invited to join a group of doctors at Children's Hospital who is looking at the implementation of DNARs in the hospital. They have recognized a gap in how each department is looking at DNARs, and how they are implementing them. Part is lack of education, part is lack of process, part is their software system lacking support of DNAR documentation.
I got to tell them our end-of-life discussions about Jacob. I got to tell them about what worked really well for us, and what didn't work for us. I got to tell them about Jacob's DNAR, and how Joakim and I envision Jacob's end of life. If Jacob's heart stops, we have accepted to let him go. We are ok if Jacob would need intubation with a pneumonia, since we know that there are times when Jacob needs help to breathe, but he will then go on to live again.
As I was telling them our story, I could see some shaking heads. From ICU & ER, it doesn't make sense to separate intubation and heart compressions and medicine to the heart. Cardiopulmonary actions go together. The pulmonologist on the other hand could see where I was coming from. So, even the interpretation of a DNAR is not always clear.
Other questions were around if a child has a DNAR, and an IV pump breaks or a breathing tube comes out accidently. Do you put the tube back in or start up another pump when the child has a DNAR? Is there time to fix it? Should you?
The role of the Primary Care Physician came up. If a child has a life-threatening disorder, these discussions should have taken place. As the ER doc said, it is very hard when the DNAR is brought up for the first time in the ER, and the family has never had time to think through these very difficult questions. Reality is that it took me over a year to accept that Jacob has a DNAR. We were asked about it in the hospital, and I couldn't use it. I just couldn't. And then one time, I got it. I had a deep conversation with a paramedic in an ambulance transporting Jacob to Children's for seizures. Jacob was stable, so we could talk. He talked to me about the importance of a DNAR, and how many times he wished he didn't have to resuscitate due to the outcome. He changed it for me.
I was exhausted after the 2 hours meeting, but I felt that I could actively contribute the things that have to improve and that the doctors truly need the parent perspective.
Reality is that it is good for me too. Good use of my brain and mind. Good food for thoughts. We haven't had to think about end-of-life for Jacob for over 2 years now, but it is something that all parents of children in our situation should think about, and agree about. We are today not using Jacob's DNAR, but we know where the pink document is in our house, and we have gone through that difficult thinking of how you want your child to pass - the unthinkable thought of your child dying.