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.
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.
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].
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.
OF COURSE she would be unresponsive ... but they didnt tell us about the drugs until we arrived to see what was going on.
You are not killing him. The disease that put him on hospice is causing his death.
I know that no generalization applies universally, but as Americans we have a strong belief in progress, in our ability to control things, in "get 'er done." And when we are faced with a situation that his declining instead of progressing, that we can't control, and that is going to conclude contrary to our wishes, we not only feel sad, we tend to feel guilty.
Death is outside of your control. Alleviating pain (or not) is within your control.
This is a sad time. I hope you can focus your energy on loving Dad and mourning his loss and give up the unproductive (and unearned) guilt.
I just looked up some literature on hospice/palliative care/comfort care and saw this statement which is meaningful to me,
"Hospice palliative care aims to relieve suffering and improve the quality of living and dying."
Meds at this point treat the symptoms of pain, agitation etc. that can accompany dying. The choice is to treat or not to treat, as Jeanne pointed out. Improving the quality of the dying process is valid to me. The doctor has assessed my mother as in the dying process, due to her disease. She shows the symptoms of last stage dementia. The recommendations made by the doctor are in line with that. They have removed meds that are not helping her and are prepared to add meds to treat any pain or anxiety. As I have mentioned before on this site, I had a friend whose dying process was not helped. She was aware and talking to the end - begging for help as she gasped for air. I would not want that for a loved one -or anyone.
Experiencing a parent or any loved one at this stage of their life is very difficult and painful. No one likes losing anyone or seeing them in them in final days, but it is a reality most of us have to go through.
I agree that you. luvya, are not killing him but treating him for the things that are causing him pain and distress in the final days of his life. I am thankful that there is treatment for such things.
She is off her meds. Sleeping a lot. But her blood pressure is better than it has been since she started hospice. Of course, this just means that what I am doing is making her comfortable.
You are not rushing anything. You are grieving. It's hard.
There are professionals who have seen death and dying many times, and we need to let go and trust what they are telling us, they really have no motive to steer us wrong.
(Hospice does not service a person who lives alone in their own home. They have to have someone with them to handle the meds and other cares. They could go into a nursing home and have hospice there.)
By agreeing to stay with your husband and provide his day-to-day cares until he died you performed a wonderful service to him. Many of us fear dying alone, or dying in pain. It is a terrible and also awesome responsibility. It is part of what I meant (without understanding it at the time) by "in sickness and in health."
My husband passed away three years ago, too, on home hospice, with me responsible for his drugs. It was scary but I have no regrets and certainly no guilt. It was a privilege to take his journey with him to the very end.
I'm quite sure you will never "get over" your husband's death. I won't. But I sincerely hope you can get over the guilt. You did not cause his cancer. You did not cause his death. You did the absolute best you could with the resources available to you. You have reason to be proud and glad of your role.
Have you ever looked at it this way? Your mother's body was approaching death. In fact, she was just hours away from leaving this life, although it might not have been apparent looking at her from the outside. She was miserable -- in distress and pain. Hospice gave her morphine to ease that distress. In other words, she was very close to death and so hospice gave her morphine. Not the other way around -- they didn't give her morphine and then she got close to death.
Your mother had a terminal condition. That is what she died from.
I'm sorry that you did not have an autopsy -- it may have eased your mind. Who discouraged you from doing that? In this area they are around $800. Could you have afforded that?
Why don't you look up morphine, and see what the lethal dose is? Then compare it to the amount she was given. This might ease your mind, too.
The death of a mother is a huge, huge loss. My condolences.