Advance Directives-Part III: An Interesting Perspective and the Wrap Up

This is the conclusion of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA hospitalization in less than one month.

Ex Utero posted a comment on Part I where he stated that he wondered what patients or people wanted to hear, during these conversations. So I decided that I would describe what types of information would be most helpful to me in this situation.

I think the first thing is understanding that putting directives in place for yourself and putting an Advance Directive in place for your children are two totally separate things. Putting an Advance Directive in place for a child, means essentially you are deciding when they will die. It’s a horrific place to be in and one I doubt most mothers or fathers could live with. I suppose the real issue boils down to the futility of his life-will the child get better or are the life saving methods that need to be employed and the pain and suffering that they cause him, worse than letting his die. Notice I did not say anything about the quality of Dear Son’s life. Dear Son has been severely disabled all of his life, so talking about his disabilities is a non-issue.

The next issue is understanding death itself. What will it look like and what exactly happens? As a physician, you have seen death many times, but I need to understand it better. I want to know if Dear Son is going to be in pain or going to suffer and how to minimize both the pain and the suffering. I know that when Dear Son has trouble breathing, his breathing gets extremely labored and at some point, it gets downright scary when he begins to gasp for his breath. I usually call the ER doc into the room at that point. This is not the last image I want to see of my son. I need you to tell me that it will be peaceful and that he will not suffer.

Finally, and this is most important, I need to know when it’s futile. I think Neonatal Doc talks about parents wanting them to do everything for their baby and pounding the lungs until they have every last breath out of them. Certainly, no mother or father wants to do that, but how do you know when you cross that line? How does a lay person know that? How am I supposed to know when it’s time to say, “enough is enough” and let my child die with dignity? I don’t have enough medical knowledge to know when the test results are coming back bad enough for this to be the case. Yes, I know the results but I don’t always know when it’s considered futile or when death is imminent.

What I want is for the physician to tell me this: “We have done everything possible for Dear Son. Based on his blood gases (or whatever test results are appropriate), his body does not appear to be responding to our efforts. While we could place him on the ventilator again, I think we would only be prolonging his pain and suffering; I am not sure how much more Dear Son can handle. I am sorry to tell you this and wish it could be different, but I think it’s time to say good bye to Dear Son and let him go peacefully in his mother’s arms. You have done everything possible for him that I would do for my own child. I think we should remove the Bi-PAP and I’ll make him comfortable. This means that he will not be in pain and he will not suffer. I will then give you and his father some time alone with him. If you don’t have any questions, then I will make him comfortable, remove the oxygen and give you that time.” I would also want some private time holding my son and talking to him alone in those last moments.

Finally, I received an interesting e-mail from a friend of mine, who also has a disabled child. We live several thousand miles apart however we write frequently about life in general and then about questions specifically related to issues with our disabled children, issues which we would never discuss with most of our other friends. In the midst of the hospitalization, I sent her an e-mail describing my turmoil over the choices as it related to Dear Son. After a few days, she responded with the following e-mail:

“I have thought a lot about your question down there regarding how far I would go to prolong my child's life. I see that you have some very specific questions - regarding making him comfortable and such - that you need to get cleared up before you can make any real decisions. I think that …..

Interestingly, I just watched a special on PBS called, "A Lion in the House." It was a series that followed children with cancer and their families for a period of years. I had never seen this show previously - I think there were seven episodes - and this was the finale. Normally, things like this show are just too painful for me to watch, but something inside of me told me to watch it. So, I did. I cried a lot. The show was heartbreaking. And you saw some of these kids die. Some of their parents went through heroic measures to save them. They kept getting them the chemotherapy, or whatever.

I thought of you. I know that you want to know you've done all you can for Dear Son. And I think a lot of these parents felt the same way. But, after their kids died, the show would check back with them. And several of them said that they'd wished they'd stopped trying sooner. I think it is easier to see this in retrospect, of course. But they felt that it benefited no one and was actually more harmful to their children to keep putting them through the medical stuff. It was hard on the kids emotionally and from a psychological point of view, they felt. And one of the kids' nurses talked about this a lot. She thought that it was really important to think about what was happening to the kids from an emotional point of view - having them go through all that they had to.

I thought that this was an interesting perspective. I would always want to say, "I did all I could for my child." And I would at least have that peace. But I never thought about looking back and wishing that I'd stopped sooner, as several of these parents did. Because I guess they knew that the child was going to die. And now that the child had died, they realized that it wasn't all that important to give them more time here, when the time is spent in that way.

It has really made me think a lot about this subject. And I've been thinking about it a lot since your e-mail. And I know we exchanged several long e-mails about this subject a long time ago.

I know that as parents, we do the best we can. There are some things that a parent should never have to decide. This is one of them. I would like to tell you that I would not let my child suffer. I would like to tell you that I would be able to separate out what is best for my child and what is best for me. I would like to be able to tell you that I would make the decision, stick with it and go through with it. But Dream Mom, I just can't. I just do not know what I would do if I were in your situation. It is a hell I never want to enter. And I'm sure that it is a very lonely place.

Please know that I am here for you. I am sorry I cannot give you better thoughts on this matter, as it is so very important. But I think that you are doing the best job anyone could do under the circumstances. I guess my best advice is to put Dear Son’s needs ahead of your own. Make the decision based on his situation - and not on your fear of what will happen to you when he dies. That is really the only advice that I have. Because when the time comes, you will know that you made your decision out of love and not out of fear.

One of the mothers of a survivor in this show tonight said that this ordeal taught her she can deal with anything. That it showed her how strong she is and that nothing is too much for her to handle now. I thought of you when she said that. Even if you wonder about your strength, Dream Mom, please know that I do not wonder about it. I know you have it and I know that you will find it when you need it. It is right there, in your heart.”