Chapter 11 Health Care Communication Ethics

I lost a good friend almost one year ago to cancer.  She suffered from "the monster" a nuero-blastoma brain cancer that was difficult to treat and even if successfully thwarted 99% of time reoccurred or too the patients life during treatment by slowly suffocating the brain.  She was 49 when she died and she was a mom of 4, 2 boys and 2 girls.

The part of the book's chapter that spoke the most to me was the passage on Technique to Tenacity.  The book spoke of the labor of care in the the middle of frustration, pain, fatigue and finding an engine that could do all of the care.  That you have to find your "why".

That spoke to me the most, because on almost every one of my visits with Shelly she would ask me "Why I was here with her, and not with my own family?" At first I was offended, "I am here because you are my friend. I love you."  She would respond with "Well you are my sister's friend first, not mine." Which was true, her sister Melissa is one of my closest friends in the world, and I only knew Shelly because of Melis.

Then when she would ask I would answer honestly, "I am only doing what I hope someone would do for me Shel."  Which again was true, I am also a mom to 4, 2 boys and 2 girls, what made Shelly any different from me?  Why her and not me?  There wasn't answer that made sense.

The "tenacity of care" that Shelly's family developed was incredible,  There was not going to ever be a sufficient answer to the why or how could this have happened, so we moved into care giving mode, They work on the why and care giving was balanced on the ultimate question of how?  How will we live without her?  How will the kids always know her love?  How will we all as a group encourage her to go when the time comes and not be selfish with the desire for her to not leave, because all of us agreed that it was too soon.

The book spoke of "sometimes this sense of "why" comes from theories and ideas, but most often it comes from a human face that reminds us of the importance of finding the tenacity to meet the demands before us."  Taking care of Shelly over 16 months and being there for the goodbye and farewell meant we needed tenacity, courage and honesty.  Never once did we speak of events in the distant future and say things like "You will be there." Not one time did we speak of her in the past tense while she was still here.

The book speaks of health care communication ethics being a place where you are in the darkness and there seems no light yet, in the "just doing" you have a sense of health and hope that life could go on after the loss.  I spent every weekend with Shelly and that light of feeling like we left nothing unsaid and we didn't focus on the inevitable and just enjoyed the day we had in front of us keeps me happy today, it was the outcome we expected with the communication that was needed to make life livable again.