My mother in law had a stroke. She had been very healthy up until that point, but there was no treatment for the stroke she had and while she was in the hospital they found another problem that they also couldn't treat. They told us she was dying, there was nothing anyone could do about it, and then said that a company called vitas had a unit right in the same town that would keep her comfortable and provide beautiful private rooms and let us stay the night with her all the time. While we were sad, we signed up knowing in our hearts that if she could just die comfortably it would be okay. At first everything was fine. She didn't get a lot of attention, and we noticed that a lot of her nurses were actually from a nursing ag3ency instead of vitas. We were told staffing changes, vacations, etc. meant they sometimes needed nurses to fill in "to maintain their highs standard of care and lot patient-nurse ratio".
When she took a turn for the worse, she began to actually need the morphine, which she never had before. We spent a whole afternoon with her miserable, getting more and more morphine by mouth which just wasn't working. During the night, she got even worse. They kept dumping this morphine and some other drugs into her mouth--they told us they were "absorbed under her tongue" but she started getting phlegm in the back of her throat and making horrible noises. They told us this was part of her dying, but it seemed to us it was from having all these meds put in her mouth. This when they had been refusing to feed her for days, saying she couldn't swallow and if she was fed or given anything to drink she would "drown" and get pneumonia and choke and die!
Despite all the medicine being dumped in her mouth, she moaned and groaned constantly. It was torture for us to watch. Finally after 12 hours of this, she started obviously choking on the morphine---coughing horribly when it was given. FINALLY they changed her medicine and started giving it through her IV (which had been there the whole time!). Keep in mind, no doctor saw her through all this, it was all nurses who would just call the doctor when things weren't working--but it took a long time for them to decide it wasn't working. We were told we "had to give the medicine time to work." Well, my mom in law didn't have a lot of time! The IV morphine did seem to work, but it took a few more hours to get better since she was SO uncomfortable to begin with! When asked why they hadn't just done it this way in the first place, we were told that hospice prefers to use oral ("under the tongue") medicine except in the very worst case scenario because it is "less invasive." Well let me tell you my mother in law didn't give a sH@t about it being "invasive" (which it wasn't, she already had the IV!!!!). She just wanted to die comfortably and because of this company being so slow and so stuck in their policies, all except the last few hours of her life were miserable, for her and for us. I have to think the oral morphine is just cheaper and that is why they don't like to use it.
In hindsight, we should have left her where she was, in the hospital. There they use the IV when the person can't swallow! And when something was going on with her, the doctor came to see her, no matter what time of day, instead of just coming in once a day at whatever time was most convenient for them! The liberal vising hours were nice, but the "sleeper" recliners were horribly uncomfortable, and sleeping the the "family room" and "quiet room" was anything but quiet, with families and staff in and out all night to get coffee. Also the "kitchen" was just a fridge, microwave and coffee pot with bad coffee. As I said before, we were not allowed to feed her, but they refused to even give her IV fluids saying it would again "drown her." Well, because of their oral medicine she practically drowned anyway! It just seemed that they didn't know what they were doing, were understaffed, and the whole place was made to look nice but was actually cheap.y made. When we went on the tour, the beds had nice comforters on them. We thought that was nice. Come to find out, those are only put on the EMPTY beds, they are not allowed to use them on patiens. What kind of sense does that make? Talk about false advertising.
My wife cries every day because she feel like she made the wrong decision, that hospice just encouraged her to come for "comfort care" to make money, that if she had had the feeding tube put in her mom she would still be alive and probably more comfortable than she was on "comfort care." Never again will we use hospice, at least not this one. We have heard good things about Brandford hospice and even though it is far away we probably should have gone their instead. About the only nice thing was the private room, but it was small, the trash can was way too small so at night there was garbage spilling everywhere. Also we saw staff and visitors walking in and out of rooms with big "isolation" signs, that said they needed to wear gloves and gowns, and they wouldn't put anything on! Even some patients on "isolation" were allowed to walk around, walk into the "family kitchen", etc. How unsanitary! What if those people were dying of bad infections, and we brought one home to our babies? All you get here is lip service.