“Comfort care,” he said. This was the choice my father made after the oncologist gave him his options, none of which sounded appealing. But at age 92 with stage four pancreatic cancer, he made the choice that he felt was the best for him. I could sense the shift in my Dad from patriarch to patient, still brave yet uncertain of the future, he knew that quality of life meant more to him than a greater quantity of time spent without good health.
It sounded good, the two words that anyone facing cancer without treatment would want: “comfort” and “care”. The social worker at the treatment center gave us her recommendations for hospice.
I set up the appointment. Little did I know that no matter which company we went with, even though “comfort” and “care” were my father’s priorities, hospice would sign us up to get the Medicare money, then do the least possible aside from assigning medications to keep my father “comfortable” with his pain.
When we called with questions or asked for help with getting the most out of staff visits, as long as they did the least possible required and met their professional duties and responsibilities, they really didn’t “care”.
The first month was like several holidays rolled up into one on the comfort care spectrum: Thanksgiving, Christmas and a milestone birthday. The visits flowed and the prescribed meds were available and seemed to work.
If we needed anything, staff would answer the phone, but as time passed, and, due to his diagnosis, things changed. The months that he had left passed all too quickly. If we did not micromanage and advocate for my father, nothing got done. I don’t mean “i’s” dotted and “t’s” crossed, but the basics.
Often we went into a weekend without hospice making sure that my Dad’s pain meds were called in by the doctor on staff to the pharmacy. Rare was their practice of giving us a better window for nurse’s visits other than just the day of the week. Unfortunately, this could also change without notice.
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Hospice did not excel at giving beyond “cookie cutter” care, either. His individual treatment constants with the visiting nurse consisted of blood pressure and temperature checks, followed by the nurse setting up his pain meds through the next week, and ended with the nurse fielding our questions with a cordial but tolerant attitude. They left us to deal with his suffering.
My cell phone became my best friend. I made constant calls to the weekly visiting nurses or monthly social workers. The number of the pharmacy with its hours of operation was locked in and they consistently responded by keeping me
