(mijo: i think he missed me and wants to go with me next time)
The society which scorns excellence in plumbing because plumbing is a humble activity, and tolerates shoddiness in philosophy because philosophy is an exalted activity, will have neither good plumbing nor good philosophy. Neither its pipes nor its theories will hold water.~ John W. Gardner ~
Secretary of Health, Education, and Welfare
under President Lyndon Johnson
In the last few months of Dad's life, he was on hospice care. I really believe in hospice. When it is done well, the patient and the family feel companioned and witnessed through the process of end of life.
When it is not done well, the family gets left out in the cold and feels like they have to protect the patient from hospice. Ours was the latter experience with my dad.
Fortunately (and unfortunately), I have had other experience with hospice--when my very dear friend died 20 years ago. The care givers were wonderful. Their communication and understanding kept us in the loop.
Today, while the memory of it all is still fresh in my mind, I wrote hospice a feedback letter. They will either accept it graciously or they won't. However, I can tell you that I wrote it graciously. If I don't tell them what it was like from my perspective, they will never know. And if I do tell them...it is up to them what they do with it.
Based on my first experience, I cannot recommend hospice highly enough. Based on this experience, I must say that if you are not satisfied not only with patient care but also with the communication with the family, fire their asses and hire a different hospice group.
In this situation, life truly is too short to put up with more grief from the care team on top of what you are already going through.