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Prostokwasha80 02-18-2016 07:02 PM

Grandmother on home hospice - questions about decision making

Thank you for reading my post. I'm pretty desperate for someone to give me advice or at least some guidance. My grandmother is 89 years old. On Feb 3 she was admitted to the hospital with an acute pain in her abdomen, which ended up being a gall stone. It had actually been there for years and she was never cleared for surgery due to episodes of heart arhythmia. This time around the stone had blocked off gall passages and caused an infection. The Drs put in an external tube to drain the gall and put her on antibiotics. She woke up confused and remained in this delirium for the past 2 weeks. At night she would get worse and start hallucinating as well as trying to pull out her catheter, the tube and the IV. She had been restrained on and off and given a variety of pain and anti-agitation drugs, which seemed to have caused a worse delirium and she stopped eating about a week ago. At first she started coughing upon swallowing some soup, but a few days after that she stayed asleep for most of the day and refused any food.

On Tues the doctors came and said that since infection had been stopped, there was nothing more they could do for someone who was in a persistent state of delirium and refused to eat (likely as a result of the delirium). After much consideration and tears, we agreed to take her home on hospice care.

Once she got home, she perked up and asked for food. We gave her some thickened juice and she hungrily swallowed, though we only gave a tiny bit at a time. We did this 3 times yesterday but toward the evening she started coughing and pounds herself in the chest as if to indicate that something was stuck, suggesting aspiration.

My personal thought was to hire a swallow therapist to help her eat but other members of my family think it is hopeless, that she will never fully get better and due to her delirium she would likely not remember how to properly eat anyway. The hospice team is not interested in providing that type of support. They've only given us more anti-anxiety drugs and gave them to her as soon as she showed indication of waking up.

I feel like it's not fair to keep her asleep on purpose unless she is agitated, which she was not. But the nurse felt she was preventing agitation by giving her the drug. So now do we just give up and not feed her at all, since she cannOt even ask for food while asleep and she is only asleep due to the drugs. Is that the way to do it?!

I'm ready to let her go if she won't get better. She is experiencing arhythmia constantly. But I thought if she starts eating, that's an indication she might get better. Hospital delirium can take weeks to shake off and if that's the case, are we preventing her from having that chance by drugging her?

Thank you...

rosequartz 02-19-2016 07:28 AM

Re: Grandmother on home hospice - questions about decision making
I'm so sorry you and your grandmother and your family are dealing with this. I think the point of hospice is to make the patient comfortable.

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