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.
Did Hospice rush your loved ones death?
Yes, I strongly believe that hospice rush your loved ones death, the morphin and Lorazepam is a very strong narcotic, has opium. Can kill anybody. If everybody know the politic and the law of hospice. No one will trust hospice! The insurance pay for the three months if your loved ones die in two weeks they make money, they will not return any payment to insurance. If your loved ones live longer they have to expand money in medicines, diapers, whipes, gloves, ...plus staff who come to visit or attended in the facility.
That said, I believe that yhere can be some unscrupulous people who run their hospice as a business with less concern for their clients. In general, however, I do not think Hospice rushes people's death. They just don't try to prolong it.
We had a good visit for Thanksgiving and he had been complaining a little about his back and was seeing a chiropractor and a spine specialist. He regularly had check ups on his bladder and kidney, so we all assumed that the cancer was in remission. In late December, he started to have bad reactions to the pain medicines, hallucinations, etc. which caused my mother and my sister quite a bit of anxiety and resulted in a couple of ER visits via ambulance. I live in NJ and I came down to visit after his second episode to see if I could push the doctors to find out what was at the route of his pain and to see if they could get a better handle on his pain management. While i was with him, he was not eating much. I would sneak out and try to bring him appetizing meals, but he ate very little do to the pain. One morning he phone us at 4am to tell us he was in pain and the nurses would not give him any more medicine. I drove to the hospital to see what I could do and then received a call from my mom, who had a history of minor strokes, that her blood pressure was through the roof. I actually thought I as going to lose them both at the same time. After a lot of prodding on our part, we finally had a biopsy performed on his lymph nodes and discovered that he had a form of metastatic cancer that was aggressive and ultimately untreatable. So, we had discussions with a wonderful nurse from the palliative care office and made the decision to move him into hospice for a few days, in order to get his pain meds under control, and then allow him to move home with home hospice care.
The prognosis was that he would live for 3 months to 9 months and he had a lot of things that he hoped to do during that precious time. He moved into hospice on a Wednesday and had a few days with some ups and downs. My mom spent the nights with him, which may have been a mistake in hindsight. We were told that the nurses spend more time with other patients, when family member stay overnight, assuming the family members are caring for them. On one night, he became very agitated and it was very stressful for him and my mother. My mother was in a panic over the fear that they would be sending him home and that he might fall and hurt himself if he was as agitated as he was the night before. The following day we spoke with the hospice physician, who said he had to give an enormous amount of medication to sedate my father the previous night. The social worker told us that he saw signs of end of life, relating to discoloration in the extremities. We decided to keep him in comfort care and of course he was not eating and within a few days he passed away.
So, the 3 to 9 month window that had been estimated by my Dad's Oncologist, became 7 days. I continue to wonder if the there was a better cocktail of meds that he could have received...and of course, I feel like we cheated him out of those extra months that he might have had. I know, at the time, I was also concerned about the impact that his health was having on my mother, both physically and psychologically. There is some guilt that we "moved him along" to help her keep her sanity and health. I'm happy to say that she is doing quite well 3 months out. But still, there are moments where I feel that i participated in cheating him out of those last precious weeks or months. Of course the rationale side tells me that those weeks or months might have been shear hell for him...and his wish was for comfort care and hospice. Still there are those moments where rationalizing doesn't quite work.
Do not feel in any way that you "moved him along". He was given the medications that he desperately needed at the time. He was suffering from what is known as 'terminal agitation" he would not have come out of it on his own. As far as pain is concerned that also had to be controlled and right at the end the patient may require increasing amounts of medications to achieve that goal. There is no easy way out the meds either have to be used or you have to watch your loved one screaming in agony and out of his mind in fear. Doesn't matter what combination of meds the Dr chooses to use, the side effects are similar as are the end results which is a calm pain free patient allowed to drift to his final destination.
The longest you could have hoped for would have been a few more days so try and comfort yourself with the fact that we live in a society where the meds are available to ease the suffering of the dying.
I know for a fact that Hospice nurses in Malawi do not have these drugs available and many patient's dying from AIDS do so in absolute agony. We live in a far from perfect society so it is very important to separate the bad from the good and be thankful that you followed your loved ones wishes and made it possible for him to die in peace and your mother can move on and accept the fact that he had some very good years that many people are deprived of. Blessings for you and your mother and the rest of the family. iI is always hard to loose a loved one especially the head of the family who seem invincible.
I can't praise the people that cared for my grandmothers enough, but the hospice that provided care for my mother is criminal. First, they refused my repeated requests that my mother's own physician direct my mother's care, which according to medicare, is a patients right. The day my mother came home from the hospital, the hospice nurse to me to give my mother morphine every two hours, which I refused to do. I felt that giving it that often would prevent her from being aware of anything and hasten her death. She wasn't suffering a lot of pain for the most part. My mother had been on hospice for a month when she became severely constipated. The coordinating nurse came out Sunday night and administered 2 enemas. Monday I assumed the regular nurse would follow up because my mother had a bowel resection just before she was diagnosed terminal and constipation posed a particular threat to her. The nurse said she had been briefed and did nothing to address the issue. Wednesday I called to the hospice twice with my mother's screams in the background. A laxative was ordered and delivered by mail. Over Thursday and Friday a friend and I removed a MASSIVE bowel obstruction with q tips in shifts, according to my mother's tolerance. It was seven days between the nurse's visits and I was so angry that I told her "If I have another problem like this, I won't be the only one with a problem." It was a very unpleasant job, but I felt that if she were unwilling to do what was necessary, she should have at least advised me how to proceed since I am no trained medical professional and I could have hurt my mom in my ignorance. I also told her that if she hadn't recognized the seriousness of my mother's condition, she was not qualified for her position and if she had and ignored it, it was even worse. Hospice had attended my mother about two and a half hours weekly. At this point, hospice started providing about twenty minutes of care, consisting of taking my mother's vitals twice a week. I was so disgusted, I didn't care, and enlisted friends to help me provide for my mother's care. When my mother became agitated in the middle of the night and I couldn't keep her oxygen levels up, I called hospice @ 3am. When the nurse arrived @5:30 my mother experienced some sort of seizure. The nurse said she felt my mother might be in the process of dying, and left. I frantically tried to comfort my mother until @ 9 am when I called hospice and said if someone didn't come I was calling an ambulance. They showed up, gave my mother something and she never spoke or had a light of consciousness in her eyes again. As rotten as I felt their care was, I do not fault them for rushing my mother's end. I feel it was done to ease the inevitable. If you have any quality of care issues you want to report to medicare, I'm afraid they use the honor system to investigate complaints. It's been a year and I directed my energy into a more positive avenue by volunteering as a long term care ombudsman. Unfortunately, conflict of interest won't let me involve myself with that particular provider. Darn!
And I hope that Medicare eventually kicks someone all round the room.
But like everything else in the Universe, we each will cease to exist at some point. It's the tragedy of existance.