Up until last week, I was a big supporter of hospice care. I thought it was a very good idea to help people with end of life issues and to help the dying transition peacefully from this life into the next.
I had witnessed one such peaceful death in the hospital with my grandfather. He had a diverticulum that burst and caused a massive infection. But in the hospital, his pain was controlled and he sunk into a deep coma and then quietly passed away. That’s what I wanted for my mother and that was the promise hospice was supposed to deliver.
This is what my impression of hospice was:
Most people, if asked, will say they dream of a peaceful, comfortable death surrounded by their loved ones. An interdisciplinary team of trained professionals work together to deliver hospice services that can make that dream a reality.
The reality was …not so much. Mom was in a nursing home and as far as I could tell the regular RNs and nurses aids continued to do all of her regular care. The hospice nurse came in twice a week and the aid came in twice a week. At least the hospice nurse took vitals and wrote about her condition – I never met the aid and I’m still not sure what she did. I asked one of the nursing home aids what the hospice aid did and she didn’t know either! Maybe in a home situation it would be different, but in the nursing home setting I felt the hospice care was somewhat superfluous.
The only real benefit I saw to having hospice involved was that it was easier to get a hold of a doctor when I needed one. The nursing home doc was hard to reach most of the time; but one call to hospice and I was able to get her pain medication increased with ease.
The day mom died, the day we really could have used hospice, they weren’t around! Mom’s condition on the day deteriorated very quickly. It was like flipping a light switch. She was unresponsive and not able to speak because she was panting and vomiting. Her legs were turning purple. Her eyes were open and glazed over but she didn’t see, and she was running a fever. Even the wounds that the nursing staff had been so carefully tending, on that day, had blackened and the pink tissue that was the promise of healing had disappeared. Everything was different.
This was the day we could have used a little hand holding. This was the day it would have been nice to have a hospice nurse talk us through what we were seeing and helping us interpret what was going on. And although I had been doing a lot of reading on line about what to expect at the time of death, and what death could look like, I was still unprepared for what I witnessed that day. Mom was struggling for breath and her oxygen sats were in the low 80s. It was the nursing home nurse who put the oxygen back on her at my request as a comfort measure and brought her sats back into the90s.
Was death imminent, or was it still hours or even days away? That would have been helpful to have some guidance on as well. As it turns out neither my sister or I made it back to her bedside in time, but in retrospect I think a lot of things happened to keep us away on purpose – this wasn’t the calm peaceful death I had expected. It was ugly and agonizing and it smelled bad too. When my sister and I did make it, minutes after she passed, we found mom with her back arched, mouth and eyes wide open in what could only be interpreted as intense suffering.
And once again it was the nursing home staff that readjusted mom’s body, put a towel under her chin, brushed her hair and then sprayed the room with a bottle of perfume. When hospice finally showed up after the fact, they called the funeral home (but I had to find the number in the phone book), and tried to chat with me using the usual platitudes (she’s not suffering now, she is in a better place… blah blah blah). I did get her to help the man from the funeral home and me get mom on his cart, but otherwise I’m not sure what else she did that night.
A few days later someone from hospice contacted me to see if there was anything else I could do and I took the opportunity to unload on the unfortunate lady on the other end of the phone. When I got to the part about placing the oxygen on mom, she commented that it really wasn’t much of a comfort measure, which of course infuriated me. No one from hospice was there, so they need to shut the F up about what was or wasn’t comforting. We did the best we could with what we had and what we knew and if they wanted some input on comfort measures they should have BEEN THERE instead of giving us cold after-the-fact information.
So my own experience with hospice personally has been less than exemplary. I guess I might recommend it to someone else with very strong reservations – it was good to be able to get a hold of the hospice docs whenever I needed them. But mom ended up with the natural death that I guess ovarian cancer provides and this particular hospice didn’t give us much assistance with that.
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