I recently was able to hear a professor and medical doctor speak on preparing doctors for life beyond medical school. He mentioned that often times preparing young doctors for death, especially the death of a child, is the hardest part of his job. He said that he always tells his students to never tell parents that there is nothing more they can do when a child reaches the point where death is the only option. He argued that there is always something more to do with regard to providing passionate end of life care.
I would disagree.
I wholeheartedly agree with the part of providing passionate end of life care, but not the part about telling parents that there is nothing more they can do.
I needed to hear that when my husband and I made the decision to take our son off of life support. My heart knew that it was time for him to go. There was a moment when I walked into his room the day before he died that I knew he could no longer fight. It is a feeling I still can’t quite explain, but one that I knew there was no turning back from.
But the doctors providing his care still had some ‘tricks up their sleeve’ to try and save my son’s life. They asked my husband and I what we wanted to do – hold him till he passed right then and there, or let them try everything they could think of to save him. I knew there was no way we could turn the second option down. I would never have been able to live with myself knowing there were still more options. We asked them to try everything.
When there were no more options, they told us that there was nothing left to do. My heart already knew this. But my head did not. My head needed to know that we were out of options. It was the only way I could ever consent to taking him off life support and letting him die in my arms.
Once that decision was made I knew it was the right one, but I am not sure I would have felt that way if I knew there were more options on the table, or if I hadn’t heard that there were no more options. Even if we went ahead and made that decision without being told there were no more options, I feel as though I would have always second guessed myself beyond the point of being able to function.
Because even though I know that medically there was nothing else to do, I have always second guessed the decisions we made. There were so many of them we made over his short life. I always wonder what, if anything, could have altered course and let him survive.
In order to let my son go, I had to hear that we were out of options. But I agree with that doctor in that providing passionate end of life care can make all the difference in the world for parents.
We were extremely lucky and blessed to have such a compassionate and caring team. I don’t know if they could have done else that day to make his death as peaceful as possible. Anything we needed or asked for was always a ‘yes’. My mother, sister, god-mother and her son were allowed to be in the room with us when he died, which broke the rule of only having two visitors at a time in the NICU. We also were able to baptize our dying son, along with his twin brother at the same time. The hospital had the staff chaplain conduct a beautiful ceremony and our twins were blessed and baptized together before we took one off of life support. He died only minutes after his breathing tube was taken out.
I know that without the compassionate end of life care we received, I would not have peaceful memories of that day.
But I also know I would have always lived with regret without hearing the words, ‘There is nothing else we can do for your son.” It helped me realize that we were no longer doing things for our son. We were doing things to our son. And that was not fair to him. As a mother, the only thing I could do for my son was let him die, as peacefully as possible. I am so glad that I was given that chance.
I am also so glad that over five years later, that day he died is remembered as peaceful for me. I will tell you that for many years it was not like that. I have worked very hard to be in the place that I am today, but without knowing we could do nothing else for him, I don’t know if I could have reached this point.