Above all: Do no harm
Toward the end of Faithís life, our oncology nurse asked us if we were prepared for Faith to die at home. This seemed to us to be a two-part question.
The answer to the first question was, of course, "No". We could never be adequately prepared for this. But we did know one thing: we did not want Faith to die for the wrong reasons. Since there are few known causes for brain tumors, it was often hard for me to find someone or something to be angry at. (I never felt like it was worth my time getting angry with God. How do you argue with God?) But I was always sensitive to things that medical personnel did with my child. It was much easier to take out my frustrations on a flesh-and-blood person. So, as physicians, I would counsel you to be extremely diligent when dealing with a terminally ill child. We could accept God calling Faith to him; we could never accept a doctor or nurse sending Faith to God. The following article expounds on this point:
We were able to answer the second question with more certainty: we wanted Faith to be at the hospital. We wanted to be in a place where experienced nurses and doctors would surround Faith. We did not want her to suffer because we didnít have the right equipment or medication or knowledge to deal with her condition. We wanted to be able to focus on being parents. Our repeated exposure to the hospital had convinced us that Faithís demise would be handled with care and respect. We give thanks to all of our doctors and nurses at Floating Hospital. We would not have had the confidence to face this terrible event alone.
Perhaps this is the most important point we want to deliver to you: the right to grieve along with the family is not inherent; you must earn it. It is earned through diligence, professionalism, insight and compassion. But once you have earned it, you (and your grief) will always be worthy in our eyes.