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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]This is why my parent refused hospice care, kept his regular doctors and Medicare/private supplemental insurance even when we knew he was terminally ill. His doctors continued to treat him even though the focus moved away from “curing” to ensuring quality of life, treating infections and managing pain.

Hospice wouldn’t have provided him with anything other than an occasional nurse visit. He would have to sign away his right to medical care and who would want to do that if they have other options? If you ask me, hospitals push it as a cost-saving measure (for them!).[/quote]

This isn't how hospice works at all. Both my parents used it because they wanted to die at home. We used a non for profit community hospice that was amazing. Both were able to get radiation and even chemo to relieve symptoms and always kept their same doctors. When my Dad was too bad and we couldn't control is pain at home the hospice got him a room quickly in his local hospital where she directed his care and he was able to pass away peacefully.  Hospice 99% of the time is a gift. But families need to mentally be prepared for it. You do most of the care giving. Which was my gift to my parents. [/quote]

So you stayed up 24/7 administrating pain medication every hour on the hour for weeks? Because that was my experience with hospice - this is what they expected from me. Two paramedics who came to put my aunt back in bed at 4 AM after she tried to use the bathroom on her own and couldn’t, pulled me aside and told me that hospice would abuse me, and if I was alone (I was) to GET OUT NOW before I ended up in the hospital myself. That hospice would provide minimal care because my aunt could not afford to pay more than Medicare provided (it was a non-profit). Sure enough, when they were forced to take her in a couple days later due to a bladder blockage due to tumor growth, they ignored the DNR, catheterized her, and then tried to bully me to take her home again, while refusing to put in an IV for pain meds so I would not have to stay up 24/7 to medicate her.  She was so weak she could not move her limbs to feed herself, etc. I would not take her home and got calls from the social worker saying things like “she does not want to die in a hospital, how cruel ARE you, etc”. Meanwhile, the reason I was cross-country to begin with was because my mother (my aunt’s sister) had had a heart attack and a stroke. I made the choice at that point to spend time with my ailing parents (father had had a stroke 5 years prior) rather than take my aunt home.  Mind you my aunt had given power of attorney to a woman she only knew for 4 months and medical power of attorney to relatives cross-country, so I had no legal ability to make decisions in the first place. 
[/quote]

No criticism intended, but if a patient is receiving pain medication every hour on the hour, their pain is not being adequately treated. The model for pain management is a long acting drug with a faster acting drug for breakthrough. If a patient is constantly in breakthrough the baseline medication needs to be adjusted.

Unfortunately, too many patients/caregivers have no idea this is the case and too many physicians put the burden of follow up on them. The result is that people muddle through and suffer necessarily.  That this should occur with hospice, whose raison d’etre is pain management, is a scandal. [/quote]

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