I know that providing hospice care is a difficult task and I do not envy anyone who works in that field. That said, I feel that as a caregiver, I need to provide and honest review so I can help others make the right choice when deciding which agency to use for their loved one’s care.
I needed hospice care for my mom because she could no longer leave the house for doctor’s appointments and needed pain management for end-stage cancer that was very painful. The positives: 1) They ordered a hospital bed (rental), special toilet attachment to help her get up, and other supplies. 2) The nurse that came weekly was caring and nice, and when she wasn’t able to help, I felt it was because the agency wasn’t making it possible. She called them right from the apartment to push for more services or medicines. 3) We were able to get the pain meds we needed so my mom could be comfortable. 4) As far as I know it was all covered by insurance/medicare… I haven’t seen a bill, and it’s now been two months since my mom passed away.
These are the main issues I had with their services: 1) During the time she was a patient with their hospice program she NEVER saw a doctor, only an RN or LPN. We never got to speak to the doctor directly. We explained our issues to the RN who explained them to the doctor. It was a game of telephone and our message was often NOT delivered correctly. 2) Instead of continuing to use our local pharmacy (which offers free delivery, and is very quick) we HAD to use their pharmacy. They would order the medicine for us and it would be over-nighted by fedex. This means that the best scenario is that medicine ordered right now arrives tomorrow. So any new pain management idea could not be implemented for a full day, leaving my mother in agony for more time than was necessary. 3) The Home Health Aide services they provided were abysmal. They offered a maximum of four hours a day (even at the end when my mom needed round the clock care). On top of the limited hours of help, the Aides that MJHS sent were not trained and employed by MJHS. They were through a separate agency, New Century Home Care. The service they provided was absolutely terrible. 4) The staff in the overnight call center is nice, but you really have to push them! One night my mom was in really bad pain. I called and said I had given her the pain meds that were prescribed and didn’t know what else to do. They said “well, you can only give her the meds a maximum of once per hour, so you have to wait another hour before giving her anything else”. I said (probably a little frantically) “my mother is literally screaming out in pain. There has to be SOMETHING else we can do.” Finally, after pushing back several times, they said “OH, she’s on the lowest dose of that medication. Let me talk to the doctor and see if we can up her dose.” I know everyone always says that the role of the caregiver is to be pushy and needy, but I shouldn’t have to beg and yell in order to get the proper pain medication for my mother. 5) They do not offer IV pain management to at home patients. This meant that even at the end, when my mom could barely open her mouth and swallow, we had to administer her medication under her tongue and let it absorb. When she was alert enough to tell me, she made sure I knew how bad it tasted! I have heard that other hospice agencies DO provide IV pain management. That is something I would definitely ask for.
Overall, at least you will get the medication you need for your loved one. But don’t expect it to be easy.
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