Good Bye Hospice

Hospice has a wonderful reputation for providing help for patients and families with end of life care. We were hoping hospice would be good for Mom, but unfortunately it has not.

One of our conditions of Mom's enrollment in the hospice program was that she would be provided with IV antibiotics and sodium chloride at home. Suzy was assured - twice - prior to enrollment that hospice would provide them when needed. Mom's oncologist spoke to the hospice agency herself, asking if they needed her to write a prescription because Mom's condition was very good when she had fluids. She was assured a prescription was unnecessary.

After enrollment two weeks ago, each new hospice representative that came in contact with Mom had a new story about which of her medications were covered. Their ambiguity immediately became a cause for concern. By last Wednesday, Suzy was told that the only medications hospice would cover is the albuterol for Mom's nebulizer treatments. This ruled out her blood thinner, her antidepressant, her antibiotics, her beta-blocker - everything that is keeping Mom comfortable and alive.

Suzy informed the nurse that this was not acceptable. Over the next two days the nurse discussed Mom's case with the medical director. By Friday, they were willing to make some substitutions on several of her meds, but would not cover the flagyl, which had been ordered by the NMRH infectious disease doc to be administered with cipro to avoid another clostridium difficile infection.

Saturday morning Mom woke up vomiting, disoriented, and with a 102 degree temp. We recognized the symptoms from previous urinary tract infections, so we called the hospice nurse. We were told that that hospice would not provide the IV antibiotics and fluids. Our only course of action was to begin administering her cipro and flagyl (still have a pre-hospice supply) again, and tylenol to reduce the fever.

Subsequently, we have discontinued hospice and are in the process of admission back into home healthcare so she can receive IV fluids. We tried to make it happen Saturday, but it is not only a weekend but also a holiday weekend. The Vital Care nurse on call had several calls ahead of us, and by the time she returned our call at 6:30 p.m. she said it was too late to admit her and to get the IV fluids from their pharmacy.

So, I'm writing you from the third floor of NMRH again. We were in the ED from about 8:45 p.m. until 2:00 a.m., then left her room at 3:20 a.m. The fluids she received in ED did the trick, just as we knew they would. Mom is in her room right now with Suzy and Jaime. Still drowsy and weak, but so much better than yesterday morning.

I have more to say about what happened to us this weekend. But right now I'm going back to sit on Mom's bed, hold her hand and thank God for his help yesterday.