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.
OF COURSE she would be unresponsive ... but they didnt tell us about the drugs until we arrived to see what was going on.
People who say "my loved one was fine until she/he went into hospice" don't seem to realize that change can happen very suddenly. Yesterday they were walking and today they are not. But when you think about it, how could that change come on gradually? That they go through a period of crawling?
So the hospital strongly recommended hospice. Mom certainly looked like she was dying. She returned to the NH and hospice was brought in. Based on past experience she could not tolerate morphine but they kept her out of pain. They ordered a special mattress and special wheelchair. They had volunteers come in and fuss over her, doing her nails, reading to her, taking her to activities in the new comfortable chair. She used catheters. They recommended a two-person transfer with a mechanical aid when they thought she was strong enough to get up. Her appetite returned. She gained weight. Her hip is not repairable and could not support her, but she progressed so well that after a few months she was "kicked off" hospice care. She'll celebrate her 96th birthday this summer. She is more confused than ever, but she is content, has some friends, enjoys out visits, and clearly is not dying (though obviously she will within a few years, if not sooner.)
Did hospice rush her death? What earthly motivation would they have to do that? They only get paid for living patients. Same with the NH, who did a wonderful job of keeping her comfortable.
There is every medical reason to assume that people going on hospice are dying -- no matter how alert, etc. they were the day before. A doctor has to certify that as their opinion. So of course most people going into hospice care do die. Not because of hospice, but because of their disease, injury, etc.
But many people improve so much on hospice's good care that they no longer qualify for the program.
My husband was on hospice in our home for 5 weeks. They kept him very comfortable. I was in charge of administering his drugs. My only regret was that we didn't have them involved a little earlier.
The death of a loved one is a terrible thing to experience. We aren't always able to be rational about the traumatic experience.
Ativan is used to relieve anxiety, and the morphine is used to help with pain after surgery. I had major surgery years ago, and had a morphine pump while in the hospital so that I could adjust how much of the med I needed [to a limit].
Perhaps the best thing to do is to give yourself time, both to let the shock settle down and to get in touch with the hospice team and ask for a clear account of exactly what took place.
What occurs to me, for example, though I don't know who was telling you about it of course, is that people do like to be upbeat about things when they're talking to a relative. So the outing with the neighbour and the big lunch, while they may sound as if he was comparatively hale and hearty, don't necessarily mean that all was well.
The lack of notification is unsatisfactory, but unless your father had given clear instructions hospice may not have felt comfortable calling you. It's also possible that they asked your father if he wanted them to call anyone and, in the moment, perhaps under stress or perhaps thinking that it was a temporary situation, he said no. Even if there was a more general understanding that you were to be kept informed, that still leaves room for communication glitches. Cock-up not conspiracy, in other words.
Take your time and get all the pieces of the picture together, and I hope there will be a reassuring explanation of what happened. Again, I'm so sorry for your loss, especially happening in this way.
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.
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.
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.
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.