WARNING: Hospices are not sugar and spice!
The first thing you need to know is 3/4 of hospices in the U.S. are for-profit businesses = RELIANCE.
1/4 are non-profits = proven superior care.
Originally hospices were only non-profits. Then Medicare decided to pay for hospice in the 1980's and the concept became a popular, competitive business. That inevitably leads to some taking advantage.
Please review this 4 minute article: https://www.scientificamerican.com/article/hospice-providers-must-be-better-regulated/. Most of the public is not aware of the problems in this very UNREGULATED INDUSTRY.
BOTTOM LINE:
You LOSE CONTROL when you hire Reliance. The patient's wishes are NOT carried out. It is a travesty.
Reliance wants to prolong life, no matter the quality or wishes, for MONETARY BENEFIT.
See our story --
That said, our family made the MISTAKE of choosing Reliance, a for-profit hospice. We did not know the difference. Our loved one who passed away said after the initial sales pitch from Reliance, "Well that was a lot of corporate sales talk." How right they were!
Our experience gave us the sense that Reliance wants to prolong life as long as possible regardless of the condition of the patient - staring, moaning, non-responsive, bedriden, not eating or drinking, regular diarrhea, etc. Our relative was not in their own home but in a kind of hospice house. Reliance insisted they were "in charge." The power of attorney was passive so that worked well for Reliance.
The hospice nurse was nice enough. The social worker seemed to be an enforcer or policewoman for Reliance's "rules" and what would benefit them. The pastor was solicitous including telling us our relative "was his favorite" though only met our loved one a couple of times. They all kept saying, "Don't worry. We are here." It seemed to be code for, "Leave, do what you want, let us run things, get out of our hair."
A primary reason we chose Reliance was they could accommodate an epidural in a hospice home. Our loved one's urine catheter and epidural for pain control both broke after about a month. They never mentioned that epidurals and catheters have an expected lifetime that is rather short! Their solution was to have our relative urinate on a pad and to change the epidural to a sub-cutaneous infusion set (yet more screaming). We have since learned most hospices change out the catheter and epidural before their expected lifetime to prevent this from happening but not Reliance.
Our relative screamed in pain non-stop for the better part of 3 days from pain for various reasons. The hospice nurse explained that they could not "get ahead of the pain." (Why not? Maybe the patient would die too soon for their timeline and pocketbook.) Finally after 3 days a more concentrated dosage was administered. Again, it seems like Reliance prioritizes extending life rather than controlling pain.
The end-of-life option allowed in California is looked down upon by Reliance. Possibly turning off oxygen is also not allowed in their world. Both of these options are completely legal. It is hospice's responsibility to educate families about these options WITHOUT JUDGMENT OR PREJUDICE.
The "allowed" call list to Reliance consisted of 4 family members in order. When Reliance did not like a call #3 on the list made to them, they decided to not allow calls from anyone but the 1st on the list to limit communication and input. The weekend nurse came in and kept calling #1 on the list (the power of attorney) "the MVP", kissing up to them.
One of their mantras is, "Every moment of life is precious." They don't care about the quality of life. Our family does not agree that every moment is precious when one is "alive" like this. read more