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.
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.
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.
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.
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!
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?"
It was your brother-in-law who made the decision to place your sister in hospice care, yes? - rather than your brother?
Perhaps he hoped it was temporary. That would be a misunderstanding of the term hospice, but isn't it possible that he misunderstood? That he was thinking wishfully himself?
The thing about all of this mis-communication, which has been so additionally hurtful for you, is that people do just get things wrong. I don't suppose your BIL was thinking very clearly or focusing very well himself. I don't suppose your niece will ever know whether she and her father picked the right choices when they were asked to make difficult decisions.
One would have thought that, ideally, they could have included you in the process better. They might have considered that you would like to be kept more fully informed, and allowed to have a voice when it came to those difficult decisions. Yes, it's true: they did not behave thoughtfully towards you. But can I just say gently that at the time they must have had other, bigger things on their mind. They were not thinking about you, or your feelings. Given the circumstances, can you forgive them for that?
When you say you are trying to get the medical records, how are you going about it? If at all possible, do it with the blessing of your BIL. Frame it as a request for information that there is no reason to withhold from you, rather than as a potential dispute with him.
I hope that you do get hold of the complete information, and I hope that it will give you clarity that will help you come to terms. But I want to add a word of caution to that.
Be very clear about what you really do want from this information. Wanting to understand exactly what took place is natural, and I hope that understanding will be helpful. But be careful not to let it lead to second-guessing any decisions that were made. You will have the benefit of hindsight, don't forget. It wouldn't be fair, but it could be very damaging, to go on to challenge your BIL's choices. You already know that your niece is struggling with 'what ifs' - if you add a dissenting voice now, you could really hurt her.
One last point: that other choice she mentioned? In the end, when it comes to the end of a life, there may be two or more choices - but none of them is any better than the others. We run out of good options.
I wish you success in obtaining a proper, clear explanation of what took place, and hope it will bring you comfort.
Do not give yourself additional pain by pouring over those medical records. Be comforted by the fact that your sister was in a safe place,well cared for and was able to pass peacefully. Grieve for the loss of your sister but don't second guess the decisions her husband made.
Medicare began covering hospice care in 1986. It really has a very interesting history in this coutry. (You could look it up.) Obviously this was long before the affordable care act. I know that in your grief you may not be thinking clearly, and tht is understandable. But I am hardily sick of people blaming anything and everything they don't like about health care and insurance on the affordable care act, when they have no idea how their complaint is related to the act at all.
BTW, my 78 yo father died 3 days after lung cancer was diagnosed. He was not on hospice and he did was not given morphine. Cancer does what cancer is going to do. We can try to intervene to make the patient more comfortable, and in some cases to extend life for a short period. "Try" is the operative word here. We are seldom in control.
age of 87 when he fell and broke his pelvis in 2 places. That was when we had to take his roller skates away. I will look up the Medicare covering hospice, w history in 1986. I am interested. Would like to really know when hospice started the Morphine/Ativan combo. Thanks again so much for posting and I am so sorry that your Dad died so young. That had to be very hard. They started to administer Morphine 24 hours after diagnosed with liver cancer. He went into a comma like state and could not move his legs or arms or anything. But when they put the Ativan under his tongue tears would come down his face. I was the one who signed the hospice papers so I blame myself. I never saw my Dad cry before. Once again so sorry about your situation.