Today is just nine days short of the first anniversary of the death of my wife, my children’s mother, my grandchildren’s, Gran Gran. In four short months, from March until June, my wife went from a vibrant part of all our lives to being a tragic and painful memory, a victim of pancreatic cancer. She was misdiagnosed for almost two years with pain they thought was from her spine but was actually from her pancreas. My 40 years in healthcare now have taught me a lesson of group think in medicine and the need for only one “expert” to be wrong, to lead all the other followers behind their diagnosis and never challenging it again. As I tried to “skillfully” lead my wife and family through all the treatment discussions, statistics and physician discussions, I was defeated by my own trust of the system and the professions. In the end it was my wife’s intuition that was correct and not my own guided by a palliative care director or the hospice staff she directed. I was assured that nothing would be done to accelerate death and I in turn assured my wife who wouldn’t believe them but in the end did and signed a consent to go on hospice. We brought her home after a failed attempt at surgery that a CAT Scan failed to show, even with contrast, 24 hours before surgery, that she was full of abdominal metastases. What ever does a “clean” CAT scan mean now or in the future? We set-up our sun room as a hospital room and the first night my wife insisted on sleeping with me. The next night she slept in the sun room because now her pain was unabated. Worst of all it was being attributed to the cancer and it was coming from her knee which they wouldn’t treat or even call in an ortho consult for because, “she’s terminal, who’s going to treat her?” So under the direction of hospice we started administering drugs as directed: my three children and I, on a round the clock schedule. In no time Gran Gran was in a drug-induced coma and continued to fight to remain conscious. On the fourth day at 3am we could take no more; we were all emotionally shattered and exhausted. No one would come in and help or even see her in the night. She was transported to inpatient hospice and while the Catholic facility was caring, they would administer no water or food. They argued that that they couldn’t lest she have to be transported to a hospital ICU and she wouldn’t survive the trip. So day by day as I asked them to at least give her fluids and as she ate her own body smaller and smaller, she died of thirst and in the end, one more injection of morphine. To say that they told me that they had never seen anyone survive more than two weeks without food and water was almost barbaric to my ears. I wondered at the original studies, Nazi Germany? So my wife was right, hospice would shorten her life and I collaborated in the injustice, and I will never forgive myself and I must live everyday with the memory of the horror of seeing my wife transform from happy and walking around one day to looking like a corpse from a concentration camp in the end. The famous painting called “Scream” accurately captured her look in the end. So I can’t recommend hospice or even palliative care. We were too trusting and it has left our family with a very different memory than the one that was described in “one Slide.” I am still so saddened by it all. rnm
-Robert, 6/19/2013
