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.
She passed that night but as she had an obstruction and internal bleeding she would have died that night anyway, but was able to do it painlessly at the hospice.
I feel for everybody affected by all this but it is making me keep going over last years events in my head and I just hope our uk hospices are run differently. I went to see a counsellor at the hospice and we talked about all this and she said doctors were able to be incredibly accurate these days and you had to trust them ... She said maybe 10/15 years ago accidental overdoses may have occurred but would never have been deliberate as that is illegal. But these days they are able to be very accurate with their dosage.
Death of a loved one is traumatic enough to cope with, having these thoughts is just too much.
Sheila
Sheila
I think fewer people would be so devastated and guilty-feeling if they read the hospice agreement and knew to protocol going in.
For example, it is standard procedure to remove all drugs except those used for comfort. Lortabs (I think) might come under comfort care, but it is possible they couldn't be given in addition to the stronger pain medication they administered. As I understand it, Lortabs are to eliminate pain; they do not extend life. I don't think that even if you fought to have her take them (and won) it would have extended her life span.
Hospice took my husband off almost all of his pills. They added two back in when I reported he was agitated without them. There goal is to keep patients calm and pain-free. They are not unreasonable about following their "rules" if those rules are not meeting that goal. My husband was not in pain. I did not give him morphine or ativan. Hospice did absolutely nothing that could have hastened his death. But he died earlier than we expected anyway. The hospice nurse was surprised when I called her. His autopsy revealed an extremely severe case of LBD and also that his heart disease would have taken him very soon anyway -- the doctor remarked he was surprised he hadn't died of that earlier.
Sometimes the actual causes of death is not so apparent on the outside. Even the experienced professionals are very often wrong in predicting life expectancy. Just because her doctor thought she might have had 2 months left doesn't mean she wouldn't live 5 months or she wouldn't die in 3 days. Nobody can say that with certainty.
Please, please Sadgirl, do not torture yourself with "what ifs." Do not feel guilty. Your mother was dying when she entered hospice. There was nothing you could have done to change that fact. The timing of death is out of our hands, or hospice's hands. Your mother and my husband died when it was their time.
Please don't feel guilty about what you could've done to gain time with your mom. A doctor's guess, is just that, a guess. Cancer and other horrible diseases have their own timeline, which is why doctors just generalize a life expectancy. Each person is different and the degree and extent of their illness is so variable. My dad's doc said he would live 3 to 6 months with his brain cancer. He died in 2 1/2 months. I don't blame hospice. They kept him as comfortable as they could during those short months. Cancer killed him.
In my case, dad was not yet on hospice when they administered the narcotics that I feel eventually hastened his death. Once given, his vitals crashed precipitously. However, I have to support what windytown and others have said: no one can say for certain how much longer they would have had without the medication. My dad's own oncologist gave me an outside range of a "few weeks" when I asked him, point blank. He was gone less than 15 hours later, and no one was more surprised than his medical team when they got their report the next morning. If you knew for sure that your mom's life would have lasted a few more weeks, but she would be in unbearable pain (which neither you, nor I nor anyone else can even imagine), would you want that for her? Or rather, would you want her to have a peaceful passing, surrounded by the best care she could get. Everyone has to think about this.
In my case, even though I feel I would have had my dad a bit longer and perhaps could have told him I loved him one more time, in the end, I knew that he knew that, and he was able to go peacefully. That is my last memory of him, and one I know he would be OK with, so as much as I miss him, I am at peace now these few weeks later knowing he did not have to suffer needlessly for my own conscious.
One point to underscore here, and I find I am evangelizing with each retelling of my dad's story: Make absolute sure that your family's wishes are codified in a Healthcare POA and discussed beforehand!! This, for me, made the hardest decision of my life one of the easiest to live with. Also, it goes without saying, please do not wait until the last minute to say you love your dear ones. You never know when their time will come. That would be a true regret.
I wish you and the other peace in your mind when this issue has come up.
With Mom's condition [head injury due to a fall], both my Dad and I were sad but relieved when she did pass. Would I wanted her to live another week or two being in a coma state? Why? For what purpose? Her quality of life was gone. She passed peacefully but waited until her favorite all time movie on TV had ended.
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.
"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.
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.
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 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.
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.
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!)
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...