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.
If it pains you to not use extraordinary measures then Hospice is not for you.
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.
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.
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.
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.
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.
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
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.
Please contact the Hospice Patients Alliance. They are patient advocates. You have a right to decline treatments and revoke the hospice Medicare benefit.
616-866-9127
I have left the phone number here in this comment, but things like that have a habit of disappearing around here. If it disappears, it can be found on their website.
You can stop this and get her out of there. Please, listen to your instincts.
The cream was a lethal drug cocktail that is commonly used by hospice.
It is ABHR Cream (Ativan 1mg/Benadryl 12.5mg/Haldol 0.5mg/Reglan 10mg)
What an evil thing to say.
I truly hope others are paying attention to your language, as it reflects your personality.
Caution should be used when taking advice from someone with such a mindset.
You seem to know what it was. You were there, were you?
I bow to your omniscience. Easing nausea is clearly against your beliefs.
I’m not sure why you were offended and harped on rosie’s choice of topic title regarding Hospice. Why does it matter? Maybe it was a last-minute thought for her, but that’s why I read this: b/c I’m having thoughts and questions and need to talk to Hospice about my Mom. If you were offended by rosie123’s title, why did you even ‘click’ on it and then read this blog - and comment and continue reading? Maybe you enjoyed it or learned something from others.
I’m sorry for your losses and those of everyone on this forum. It’s very difficult watching our elderly parents go downhill or suffer. Or any of our family and friends. We don’t want to give them up, but we want them to have peace and know it’s ok to go.
My sister and I tell our Mom that we will be reunited with her, and she will be with all of the family and her friends, which she talks about each day. At 91, Mom has outlived 3 of her 6 children, our Dad, all of of her 7 siblings, most of her friends, and of course her parents. She says she’s ‘ready to go home’ and be w/all of them, and we understand. I’ll never be ready to give her up, but it’s hard to continue wishing her to stay when she has less quality of life each week and she hangs on b/c she loves us and is strong and a survivor. :)
Thank you all for letting me share/vent, and b/c of reading your stories, I now know I need to talk to Hospice, and also w/my sister so we can make decisions. Blessings to all of you and your families.
It is actually a very informative site and far from what I expected. There is a great deal of information and I only had time to skim it.
It started by outlining the Hospice Philosophy which is a very good thing to read for anyone considering hospice. There is also a link which explains what hospice covers under Medicare /medicaid and many Insurance companies. This link is about 45 pages so takes a lot of time.
All this information is well worth reading because it really tells you what hospice can and should be doing for their patients.
There are horror stories included which Prolife is fond of quoting. They are horrible and no one should have to go through the experiences those poor people suffered.
That however is not the focus of the site. In no way are they trying to disuade people from using these end of life services and to suggest that this is their purpose does, what is probably, a fine organization run by decicated volunteers a great disservice.
It is a 401c charitable organization and no one is paid. it is supported by voluntary contributions. I would actually recommend making memorial contributions to them for their fine service.
Now to the bad stuff which is none of their making. It is not just about what can and does regretfully happen in hospice but in the entire healthcare business these days.
From my own experience the elderly do get substandard care in some hospitals and I can only assume it is because they are considered expendable. I would have been left to die on several ocassions had not my husband spent every day and many nights at my bedside. Fortunately he is a retired MD and was able to advocate for me. Think no food for 10 days, missed doses of essential medications. So much IV fluid that I went into heart failure. This was in a major teaching hospital.
The bottom line is that money is driving the healthcare industry these days. Medicare patients can wait months to see a specialist because enough are not employed. You can't have an organ transplant if you are over 70 so if the person at the top of the list gets the first available organ, it may be from an older person and maybe only have a few years of life so the cycle has to begin again for a young person.
One hospital had no hand washing facilities either in the room or the corridor. There was a half bath but no one would use that because patients dirty hand had been on the taps. Instead they relied on hadsanitizer stations that were liberally supplied. I later spoke to the chief medical officer about that and other things. He said he had been trying to get the sinks installed for a long time but the board always refused him. This same hospital had beautiful grounds with huge pots of seasonal plants in perfect condition by all the entrances. This was very pleasant to see but wouldn't sinks be a better investment for the patient's welfare?
There is also some political stuff on the site which I won't go into because of A/C protocol. But the reality is that healthcare has become increasingly unaffordable.
There is also what I perceive as a push to enroll the sickest of us into what seems to me to be a paliative care program. The insurer for the medicare supplementary plans identifies those with the most long term health needs that they regard as fragile. At present it is voluntary and you still keep your PCP but there is a PA assigned to your case and visits monthly. There is also a RN who may also visit and help available 24/7. The RN calls every two weeks to check on the patient. The patient is supposed to call some one on this team when any problem arises and someone will advise or visit. This is suposed to prevent unnecessary visits to ERs or wait for an appointment with the PCP. This sound very nice and convenient which of course it is and the patient can still consult and visit specials of their choice. The PA can also prescribe which is a convenience for minor things. There is also mobile X-ray and blood testing right in the home. This is a medicare program administered by the insurer. But being the nasty suspicious old lady that I have always been I a m afraid it could be the thin end of the wedge for the elderly and disabled. PCPs are also required to ask patient's with long term diseases if they want to be a DNR or if they are sick of going to numerous Drs and would like Palliative care. My PCP apologised and said it was something she had to ask.
Anyone with a few hours to spare would learn a lot from visiting this site and I would thoroughly recommend taking a look. it is designed by caring people to help not to frighten.