I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
I do NOT feel we euthanized Ron! He was able to make his own decision about receiving hospice care as well as the DNR.
Kat: You didn't see how much pain he was in since Thanksgiiving. Can you imagine not being able to sleep for more than 2 or 3 hours at a time, waking up screaming, crying & cussing because of the pain. The first pain prescriptions weren't helping; he got another and the pain patches from the oncologist. When he was in this pain, probably caused by the fractured pelvis from the spread of cancer to his bones, he wanted it to be over.
Yes, he had a few good days, usually followed by horrible days - probably because of the toll it took to be "okay" to be there for his family and loved ones on the "good" days!
You were there when he started throwing up buckets of blood and none of the meds seemed to be helping. WE NEEDED HOSPICE!
The only problem I had with the whole thing is the part Kat mentioned about pushing the IV button for morphine and then, later when the nurses kept asking us if we wanted Ron to have the meds. Since this is my first experience with hospice, I'm wondering if this is the norm? The hospital contracts with some of the hospices for inpatient services so, like Kat said "WTH?"
But when you accuse me and many other caregivers on this forum of just being tired of caregiving and of guilty of homicide, well that is going entirely too far. Make your own decisions based on your own beliefs. Share your beliefs. But judging and accusing others is way out of line. Shame on you!
The committee included lay people as well as doctors and lawyers and ethicists. It interested me that in the summary this point - about oral care, hydration and assistance to drink - was rammed home two or three times. Clearly, it is the single nightmare that keeps more people, and especially more family members, awake than any other.
So: it is now made crystal clear to all involved in end of life care that if a patient requests a drink, or if family members are anxious, it should be given - with assistance, and with cautionary advice in case of swallowing impairment. Where patients do not request drinks, still great care should be taken to swab and rinse the mouth routinely to minimise discomfort.
The sadness is that this has to be spelt out. It reveals that - not news, perhaps, but horrible to contemplate - not all nursing and medical practice has in previous years not done the obvious, and kept patients comfortable. "Quiet" has sometimes been good enough.
Well, that has *not* been the practice everywhere, ever; and it is also made clear that such poor practice has happened because previous guidelines were misconstrued or misapplied. In any case, I'll be watching this space and hoping to see better reports in future.
JeanneGibbs, I'm not going to get into a p**sing contest with you. We were told by the HOSPITAL, not the hospice that this was it. There was no choice, I have no reason to make this up.
In fact it was so horrific that when my father was dying in the ICU one year later after my mother I and they started in with the hospice(there was only one in the area) I refused and was told "well than he can die in a ward here with a nurse who has 8 other patients but he can't stay in the ICU". They were strong arming you into this was going to be the way it was.
I told him to go join mom, she was waiting, and he did about 90 minutes later. While I was brokenhearted it was a relief to not put him through that.
This happened in FL, the joke of the nation. Thankfully I moved back home to CA, and will never step foot in that toilet known as FL again.
But it happened exactly as I said it did, there was no choice there, they won't let you die in the hospital room. My father was in the ICU in a private room and here they are telling me he has to go to hospice.
It may not happen in some states but Floriduh is like living on another planet when it comes to any type of normalcy.
Both animal and human studies indicate that administration of large amounts of intravenous crystalloids prior to controlling bleeding is associated with cardiac dysfunction, abdominal compartment syndrome, harmful inflammation, acute respiratory distress syndrome, multiple organ dysfunction syndrome and increased death. It would have been very painful.
We had Hospice the last two years of Mama's life. I lost her just before Christmas this year and am currently going through so many of the same emotions you are describing. I am almost at a point of feeling totally debilitated at this point. While, for the most part, I have to say our Hospice team was excellent, there were some things that happened near the end that are still confusing to me, and let me say here I don't know if it is the "what wasn't done that might have been done" or just the difficulty in accepting the loss is doing me in.
First of all, and something I find myself still struggling with guilt over, Mama had broken a tooth on the Sunday about two weeks prior to her passing. At the time, Mama had been in decline, but she had also gone through this identical issue a year before....the broken tooth abcessed and finally had to be removed, and afterwards, she improved significantly....I was praying for the same this time...Didn't happen. This time, the tooth was basically removed the same way as the last time, and there were three others that were found to be very loose and as she was already numbed, they told me they might as well go ahead and get those. I did see they were loose and didn't think it would be wise to keep having to bring her in to the oral surgeons so I told them go ahead..Everything seemed to go fine....no issues, Mama was a champ and we went home seemingly triumphant.
In a few days Mama began to run a fever, the fever got worse...and I had brought up again (as I did BEFORE the procedure...why they were not doing the megadose of Amoxycillin as they did the last time. Our nurse just kind of shrugged it off and said oh well, guess they didn't think she needed it...Now, I'm not saying she did or didn't need it...but long story short, the fever spiraled out of control...Mama took a horrible downturn and exactly a week from the day they removed her teeth, she passed...exactly four weeks ago tonight...
I still have panic attacks feeling guilty that I should have demanded the amoxy...I should have done this, could have done that...what if I had done this or that...and all in all, her passing FEELS like my fault...I can't get past any of it. I will think I am doing better, but the feelings of guilt keep coming back...I attempted to seek help through their bereavement support (which they so proudly told me about the night of Mama's passing) and I have been pretty much ignored since that time...
I'm not sure where I am going with this, except that it sounds like you did absolutely everything humanly possible for your brother, and I'm sure he knows it....It sounds like your Hospice team was responding appropriately...and all in all I think mine did as well...but this guilt...this never ending guilt is going to do me in. I feel like I could have prevented my Mama's passing...and I am having trouble dealing with it...
I think grief counseling would help, but so far my efforts at seeking it have not been too successful...I will be thinking of and praying for you....the advice of vstefans and Jeannegibbs cannot be improved upon, and I think them as well...I wish I had answers...but I think this grief process is just a really really difficult thing...and all we can do is take it one day at a time....I think your brother is smiling down from above and if he could he would say thank you...I think perhaps Mama would as well...
The morphine was for pain, the Ativan was for anxiety, and there was also a med for nausea too, which also added to the equation because it makes you sleepy as well. He originally did have a pain patch, but they supposedly lasted three days and he was wearing two at once (hospice suggested) and they were not helping a lot after the first few days. I know his disease was VERY progressive and fast...but wow. :( Thanks to the three of you for your comments and prayers. I guess my next step should be a support group or therapy...as I feel this is my most difficult thing I have had to deal with...and I am not doing so well in the quiet moments. I do realize it is early...but I did not even grieve like this with the loss of my dad...though that seemed more "natural." *sigh* Ronnie was so afraid and nervous (thus the Ativan)...he truly had ZERO idea that he was passing so fast. I dunno if it ever really hit him...it was not denial...he just thought he honestly had a couple of years to fight this illness, but it would eventually take him. When I had to tell him (he was also severely hearing impaired, so we started using a wipe off board to communicate those major things!) that his doctor had said "6 months"...well, I will never lose that image of the look on his face. And I guess part of me feels I "lied" because I could not fathom telling him that he said "days to 3 to 6 months." *sigh* (Sorry for the babble!)
JeanneGibbs, hospice is not always a choice. We were told at the hospital that they could do no more for my mother and a woman from hospice was coming to meet us, there was no choice.
It was an awful experience and I reported them to the state, an investigation was done and they were found to be in violation or rules and ethics. Didn't do my mother any good, but I hoped it would help other families.
But there was no choice.
My husband was on hospice at home, so every drug decision was on me. Once I called them about a symptom and they asked if I had given him X from the med kit they provided. I slapped my forehead. I'd forgotten that they'd left something for that symptom, and I gave it to him.
As you can see from posts on this thread, many people accuse hospice of over-medicating. As far as medications go, I think Hospice is damned if they do and damned if they don't. Apparently where your brother was they want it to be in the hands of the family, just as it would have been if he were at home. It doesn't sound like they did a super job of communicating and supporting you, but part of that could have been your high distress level.
Your brother was dying from his disease. Nothing was going to stop that. You did your best under very stressful circumstances to ease his way.
That said, a dear friend of mine died pretty much at this same pace and she specifically took as little medication as she could get away with. There is a wonderful New Yorker article about what hospice is really supposed to be about and how people are supposed be care more about your quality of life, finding out what is important to you and helping decide how to get as much of it as possible within the constraints of the situation. Just Google for "new yorker letting go hospice" for that...
You were there for him. You were trying to make his last hours easier and better. That counts. Try not to let the stupid statement about "committing a felony" stick in your craw - that was a total BS thing to say to you or to anyone in that situation, IMHO....just ass-covering at your expense and totally out of line. You are not a criminal, you are not a Kevorkian, and you ARE a loving sister who has lost a dear brother, and my prayers are with you.
My big brother, who was only 53 years old, was diagnosed with a suspicion of bladder cancer, shortly before Thanksgiving. After biopsy, PET scan, and other tests, he was told he had bladder cancer that had metastized to his pelvic, leg, and hip bones as well as his liver. He was told he was terminal and would be considered only for palliative chemo for pain control. After the liver biopsy confirmed that it was the same (bladder) cancer, his oncologist told us we did not need to come to our next appt. and that he had "days to three to six months." We home hospiced him until we needed 3 days of respite care to stabilize his meds. Being in a rural area, they did the respite hospice care through a contract with the hospital, so he was admitted to the hospital, as a hospice patient. Hospice stayed in touch daily.
We had to demand an I.V. for morphine. (basic saline mix, not fluids) were given. We also ended up demanding oxygen. My brother was DNR, but strictly no heroic efforts to be made, such as vent or defib. IV and oxygen, YES! We were immediately told that my brother had to be the one who pushed his pain (morphone) pump, or we would be committing a felony. The nurse later said, "If he vocalizes to you verbally or through his eyes, you can push it." (WTF?!) Eventually we had them remove the pump and go to the nurses injecting, but we STILL had to be the ones who asked for it, every time. They would come in to the room and ask us if he needed more pain control. They suggested adding Ativan, but made US feel we were requesting it. The entire time, we were asking each other (myself and my mother), "WHY are they asking US what to give him...we are not nurses or doctors?!"
On January 1st, 2016, my brother took his last breath, almost immediately after a dosage of morphine. The nurse had told me in between doses, that she could tell his respitory rate was slowing. (I think this is when we decided on oxygen)
I cannot rid myself of the feeling that *I* euthanized my brother. I am completely devastated and having anxiety attacks and horrible dreams that make no sense. My brother went from being in pain & with little energy, to a couple of great days where we actually went out. Three days before passing, he ate three full meals. He had not urinated or had a bowel movement in days, however. He was completely aware when checking into the hospital, though he slept frequently. He woke and always acknowledged me, held my hand (tightly!) and spoke some. After the morphine and Ativan for 24 hours, he had a "rattle" to him and just went downhill. I lost it a couple of times because of how uncomfortable he seemed when it was about 10 or 15 minutes before the time he could have more morphine. But I keep asking myself, was he agitated and trying to express more...like he did not want to be drugged? I am so lost.
"Hospice....no one ever comes out of it." My mother did. Of course everyone dies eventually, but not necessarily the first time they are on hospice care. Mom, not expected to last the week, "graduated" from Hospice after a few months. I really think the extra care and attention she received from hospice contributed to her getting better. She may need to be on hospice again. (She is 95.) Perhaps next time she will die. With or without hospice we need to expect her to die.
My mother was not destroyed by hospice. My husband, who died after 5 weeks on hospice, was not destroyed by hospice. He was dying from a disease, and the autopsy confirmed the causes of his death.
I agree with you that everyone has a choice to use hospice or not. Your mother signed the paper to use it. She was in the position to make that decision. I am very sure that it wasn't an easy decision for her. I hope your unhappiness now isn't causing your mother distress.
We are all doing the best we can. She is deteriorating because of her ailments, not because of anything anyone is or is not doing.