A few years ago, I decided to take my dad to an ALF. He could no longer take care of himself. He couldn't cook, drive, shower and dress himself. He was always using a walker and he fell of few times.
While at the ALF, his health started to get worst and he developed pneumonia and urinary infection. He was admitted to the hospital a few times for these condition then released thereafter. Last time he was urinating blood, I took him to the hospital and the dr told me that he has a mass in his kidney and his lungs are filling up with water. He told me that it most likely is cancer .he said because he is 84, it would be dangerous to operate on him. I made the decision not to have the surgery on him, rather keep him on medication and his doctor at the ALF will be checking on him once a week. His ALF doctor told me that he probably will not be getting better and that I should consider Hospice because he will get more nurse attention then what the ALF nurses can provide for him. He said that having Hispice doesn't necessarily mean that he's dying anytime soon, but it's a better option for him in terms of being monitored. So I agreed and he had a nurse come 3 times per week to take care of him and keep an eye on him. One time he had the urinary infection again, I told hospice that I should take him to the hospital and they said that once I admit him to the hospital, he is no longer under hospice responsibility. They suggested that I can take him to their hospital but they told me that all they will be doing was pretty much take care of him but not making sure he is improving , so I decided to take him to a regular hospital instead and a few days later he was fine and came back to the AlLF at which point, I signed up with hospice again.
That was about 6 months ago and he's been fine since. I saw him frequently and he was holding up just fine.
3 days ago, hospice called me and told me that he is having serious difficulties breathing and they ordered a nurse to watch him in his ALF room 24 hours a day for the next 3 days. I called him the second day and he semmed fine but I could hear that he was not breathing normally but we joked, he was very responsive and present. I dropped by to see him yesterday after worry with my daughter and there was a Hospice nurse sitting on a chair in his room, I went to him and I thought he was sleeping. I tried to wake him up but he wouldn't wake up and he seemed unconscious .nhe was breathing through tubes in his nose. I asked the nurse as to why he is not responding to me and she said that he's been like this since this morning, he has drastically deterioted , he's non responsive and his temperature is 104. Then she said" didn't someone tell you?"
I said, no, no one told me anything today and I spoke to him yesterday and he semmed fine. She said his condition today is really bad and she's sorry that no one contacted me to tell me. So I immediately called an ambulance and they rushed him to the ER.then he was admitted to ICU. I signed a DNR a while back with Hospice so his ER doctor asked me if I want to keep the form or I can revoke it so I decided to revoke to see if he gets any better. Hours later, ICU called and told me that he's doing worst and he went in pot a coma and they're putting him on life support. No w they are waiting for the catscan and after that, I have to make the decision whether to reactivate DNR or not.
His nurse tolled me that he is lucky he didn't have a stroke with a 104 fever and he probably had that fever all day and that's why he was no responsive.
I would like to know whether hospice should have called me immediately upon noticing that his condition is worsening?
Is it protocol to just let him deteriorated without doing anything nor notifying anyone?
Did I make a mistake by enrolling with hospice?
The doctor and the nurse a
Made me feel so guilty that I chose hospice for him. Was there a better option?