I’m still a little fuzzy on the distinction because what I heard (which might not have been exactly what I was told) differs a bit from what I’ve read. I find that there is generally conflicting information on the nuances between these two levels of care and each provider is a little different. However, we are going to move past that sweeping disclaimer and I will share with you how I view these two services and the role they have played in the care of my parent’s.
When my dad, who was in a moderate stage of Alzheimer’s, was diagnosed with a cancerous tumor on the back of his tongue, we pursued treatment options and realized, not only was he not up to the fight, but before we even got to treatment options he would have to be put under anesthesia just to clean his teeth. I saw how poorly he responded after being put under anesthesia to mend a broken hip and that news was the final straw. We called in hospice to make him as comfortable as possible. He was in his apartment with my mom for about a week after understanding his diagnosis. He was in a lot of pain and had fallen trying to get to the bathroom in the middle of the night so we had him transferred to the hospice facility. He passed after the first night in the hospice facility. The team worked to keep him comfortable. We were shocked to have him go from diagnosis of a tumor to death in exactly 4 weeks. For me, I’m glad he didn’t suffer any longer, but I still cry over my loss.
Mom was admitted into hospice care after she complained of back pain, was treated with Tramadol, and for the lack of any other way to describe it, behaved like an overdosed hippie. She could move but not manage to even stand or follow simple instructions. She tried to talk but she only spoke soundless words. I wasn’t really clear that she was in “hospice” until I called to have the doctor explain it to me. It took several weeks for her to interact with me and she required a wheelchair after being bed-ridden for so long. I still wasn’t sure what it meant until as my mom began to improve, I asked if physical therapy (PT) might help get her back on her feet and was told that PT isn’t something you do with a hospice patient.
In short, I believe hospice focuses on comfort when a terminal illness with a near-term end-of-life is expected, and no therapy would be provided to improve quality of life. Palliative is geared toward those who aren’t looking to extend a life, but want to be comfortable. Generally, most with varied forms of dementia are in palliative care since there is usually a longer life expectancy.
It’s all confusing and each bit of information seemed to foster another questions. It has served me well to meet with the medical and care team and explain our goals for my mom’s care. It never hurts to ask. You know your loved one best, so do what you feel is right. Satisfied.
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