The hospice people are wonderful, my sister is convinced that only the nicest possible people are allowed to work for hospice. I think so too.
Normally, I'm sure its very simple to get a hospice referral. The physician or someone in the office sets it up. My sister called the oncology office to request the referral for our dad. Whoever answered the phone refused to talk to her, even though she has power of attorney and Dad has signed forms for medical release and whatnot on file. She, and her husband both, called the office and left callback requests for the doctor, and he claims he never got those messages. Really, it shouldn't be this hard. I know there are patient confidentiality laws, but they wouldn't even talk to my sister.
My sister is persistent and resourceful, so she called Dad's regular physician's office for help. They were very helpful, explained what they required from her in order to process the request, and set up the referral. And we got to meet the nice hospice people. There is a nurse that right now stops by twice a week, a home healthcare aide who would stop by twice a week to help with light housekeeping and cooking if my dad would let her, and a volunteer who plans to stop by twice a week to keep company and help if Dad wants to make cookies or something. After a previous incident, Dad isn't supposed to do any unsupervised use of the oven or range top. Microwave is ok. Later, and as needed, the frequency of nurse visits may increase, and the hospice doctor can prescribe drugs to alleviate pain, anxiety, agitation, and other distresses.
All of the hospice visits, in addition to our own, are our way of keeping an eye on Dad. The hospice nurse is concerned about Dad living alone, and told us that sometimes things go bad suddenly, like waking up and not being able to get out of bed. Right now, Dad's girlfriend is staying with him. L is truly a gem of a person, but she lives about 2 hours away and can't stay with Dad all the time, she has responsibilities of her own. During the time she is here, Sister and I plan to cobble a plan together, ok, more like plan A, B, C and D, on how to increase supervision for Dad at home, and for when he might need to move into a care facility of some sort. We're seeing more an more changes in Dad's behavior, and we are concerned.
Besides the palliative care offered by hospice, we are very grateful for the insight and experience they offer. I suspect hospice has more direct contact with end stage glioblastoma patients than many doctors. The information the hospice nurse gives us is really helping us understand how Dad's brain is affected by the tumors, and gives us a general idea of what to expect in the future.