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.
Why I ask, usually there comes a point in time when the organs start to shut down, and any food or liquid just sit in the stomach and in the kidneys making it quite painful because those organs can no longer process.
No, Hospice isn't giving your Mom meds to keep her quiet because they cannot be in her room around the clock. The meds are to keep Mom pain free. I rather had seen my own Mom in a peaceful deep sleep then crying in pain. Yes, it is a tough thing to watch a parent pass on.
We have to realize that this is our first rodeo and everything is new to us. Hospice has been doing their care for decades so they know exactly what to do. Ask questions if you are unsure about something. Hospice is available 24 hours a day via phone.
mentalhelp.net/articles/ativan-overdose/
Washington Post article on hospice patients getting lethal overdoses..even when not showing any pain ...
washingtonpost.com/news/storyline/wp/2014/08/21/as-more-hospices-enroll-patients-who-arent-dying-questions-about-lethal-doses-arise/?utm_term=.228190ff7b02
Last night I talked to the CVS pharmacist. I asked him if morphine will stop the pain of sepsis building up from a UTI because as of now the next time my mother gets a UTI, my plan is to put her on Hospice and let nature take it's course as she's been homebound for five years from due to no quality of life. He said no and that morphine will only help with the pain and she will still feel a lot of discomfort as the infection is building up in her bloodstream - even with sedatives. He also said with some patients, morphine causes insomnia so that just makes the whole end of life process even worse for the patient. The reason why I bring this up is that it all depends on what is the medical condition that led to your loved one to go on Hospice. An example: When a patient is experiencing delirium in the last months or weeks or whatever, the typical care plan is to prescribe morphine and a sedative - but for some patients, these sedatives actually can cause a psychotic break because they make the existing dementia symptoms - or those genetically predisposed to dementia - even worse. There are plenty of documented clinical studies on Web supporting this. Last year, my mother was on Ativan to try to help her sleep - two weeks later she turned into a psychotic uncontrollable nightmare...very combative, very angry, would not eat, etc. I immediately stopped it and called her PCP and told him "Hell NO!" to Ativan. After a few days, she back to her normal self. If she were under Hospice care, they may have viewed her behavior as this is the end of life when it's actually the medications they are using because they are not appropriate for her genetic health. It's not unusual for off-label drugs to be used while on Hospice - and Hospice knows this - but they are limited to the types of drugs that are available for use because of manufacturing/pharma companies working 24/7 on the next miracle drug to treat this or that medical condition and if there was a drug that's appropriate for delirium issues - most definitely they would use it. It's not the fault of Hospice when there is no drug on the market right now that can treat complicated delirium issues near end of life. I'm not a martyr for Hospice because my father did have a bad experience with one of them (but I have two good ones for my mother when the time comes). As a POA/loved one making decisions, you need to be practical about what it is you want with the understanding that it may not work - and do whatever it takes to relieve the suffering as quickly as possible - for the patient. When Mom does go on Hospice, she will start with morphine...if they suggest a sedative that I know isn't appropriate for her - I'm telling them no and I'll just let her ride it out until her end because it's criminal to give her something like Ativan or Haldol when I 100% know it will cause a psychotic break. I'd rather have her body shut down from dehydration or no food and have the overall decline process be done with in a few days. I'll just put on my headphones while she's screaming. For the last six months, she's been talking about my father - a first in ten years when he expired - and she keeps saying she wants to "go home". I tell her, it's okay you can go and I'll miss you. She replies I'll miss you too. Of course I leave the room to cry because I don't want her to see this.
A POA/loved one can always refuse medication or treatment plan from Hospice or any healthcare professionals - Just tell them no. Because of my father's horrific suffering in the healthcare industry, I've taken it upon myself to thoroughly educate every medical treatment for us. Too many people are too trusting of their healthcare providers...People spend hours researching the best school system for their kids...the best washer and dryer...the best-used car...but when it comes to healthcare, they blindly hand over their case to someone, many times a stranger, who spends less than 15min reviewing it. The doctor is there to treat. How often do they start a consult with "Let's talk about the quality of life." It's not their job to do this because of medical liability but there are some doctors that do - not many. I was painfully burned by what happened to my father - and I'll never let that happen again.
I recently was in the hospital myself and in the room next to me was an older woman who like my mom could not use the call button for help, she was calling for help and I used my call button to let the nurses know that she was calling for help. I just hope that I will receive the care like my mom.
Yes, that has been my same experience. Hospice is supposed to come up with a plan of care for each patient, based on the patient's individual needs. All I've ever known them to do is pump them up with morphine, adivan, haldol and others. It's the same protocol for every patient!
I recommend the Hospice Patients Alliance website. It is filled with information about this. It was founded by a former hospice nurse turned whistleblower.
Carly Walden is a board member of the Hospice Patients Alliance, and she now has her own radio show about this. Just look up the Marti Oakley Show on blog talk radio.
Health care is no different than any other business...there are good and bad ones out there and you just have to network to find the good ones before your loved one actually needs it. Unfortunately, not many of us have this option because we just go with whatever agency is handed to us in the midst of a medical crisis. Because of my father's experience, I have two hospices that I know are good and are on my speed dial for the time when I have to put mother on hospice.
It was horrific the way everything played out in front of my eyes. I just felt as if the process was so rushed and the nurse we had was not compassionate. She had already given her morphine to ease the pain so she was resting. Then she gave her Oxycodone and 2 other medications within short periods of time. Hearing multiple families stories who had similar experiences to me just put things into perspective. Yes Hospice may have helped you and others but that's not going to be the case for everyone. People have different experiences and see things differently and You are right Hospice is not for me and I will never use them for my loved ones.
If it pains you to not use extraordinary measures then Hospice is not for you.
There are patients who "graduate" from Hospice, and continue to live productive lives. That was the case of that 13 year old boy from Texas, who's mother was starving him to death [she was charged with attempted murder], which resulted in the child having a life-threatening blood infection. Thankfully he pulled through. Note that not everyone passes away in Hospice.
As for morphine overdosing, it would take one dose of 200mg for that to happen. It would be impossible for anyone to get their hands on such a huge amount. Hospice uses between 5mg and 15mg to make a patient comfortable.
My Mom wasn’t in hospice.She died in the nursing home she had been living in for the last 15 years.
The nurse who gave my Mom the 2 injections was a nurse who wasn’t working at the home full time, she just worked during some nights per week.
This leads me to believe she wasn’ capable to make the right decision about the morphine.
Yes, I know my Mom was going to die anyway, I just know that she would have lived more days without the meds.
She was totally awake and alert.
The nurse should have told me that there was no way we could ”change” my Mom’s rapid breathing, this breathing was just a normal phase in the dying process and nothing that had to be corrected.