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.
I would find it very sad and deplorable to think that there are hospice service providers who - how can I put this? - have either lost sight of or were never committed to the central mission of the hospice movement. But I don't find it impossible to believe; I wish I did.
What's needed is dispassionate reporting of how these services operate on the ground. Very upset emotional relatives are in no state to do that. It is a job for standard-setters and regulators in government.
"What's needed is dispassionate reporting of how these services operate on the ground. Very upset emotional relatives are in no state to do that. It is a job for standard-setters and regulators in government."
You do realize that these services do not fall under the same standards or regulations as hospitals..and that it is the fastest growing business..with now only a few major service providers ...since they have merged into just a few large dominant corporate providers..that have lobbyist...as the baby boomers reach that age..where they need these services...paid by the federal government...and a growing expense..regulators arentreally going to be interested..want to ...keep a certain age group around...realistically...just look at how SS and Medical care cost has changed for the worse for the elderly..and sick...sorry..yes...there has to be a good system in place...and I am glad the government sends out survey forms to those that have used these services...it became necessary after lawsuits of abuse...and a company telling their nurses that they had to speed up the death process...one of the nurses was appalled..horrified as what she was being told to do...and reported it...causing a major investigation...and watchdog created...people can discern in these questionnaires... from an overly irrational emotional person...from one being objective...with valid criticism....and I do have to say..over all...the service that was received...and all,those involved were really good hearted people with the intent to help in anyway ...within their ability...and certainly arranged to have anything needed delivered...
my only issue. ...concern...is the dosage...dosing...med combination...and making medical determinations in which they have no qualifications...or experience...at least the Nurse should call in the nurse practitioner to see the person...and..they should be better schooled in meds..ie..the nurse practitioner was doing a one to one of Fentanyl to morphine..opiate ..it is not a one to one conversion...anyway...at least I know..and can protect my family...
and to all those that lost family members..Freinds..my condolences..it is never easy...and these services do help,us...and the family member...and as you say...things happen for a reason...hopefully for the best all around...as we never know what the alternate outcome would have been...and we as humans can only do ...within our ability...
For example, give the Morphine 4 times per day AND As Needed. Then when asked, how will I know, they will give you suggestions of scenarios and tell you to give more pain med under those types of scenarios. I did note that our Nurse (in caring for my FIL at home until his death) did not want to lock us into a specific dosing regiment near the end, as she felt that we were well versed in the management of his pain, and that we were doing a good job, also that there was never a case of too much medicine dispensed, from her inventory of the amounts we always had on med ordering day, every week.
The process of documentation was At First, very important to me, with my medicine background, but soon, My day to day writings became routine, and my charting became very repetitive, and then I only documented things that occurred that were out of the norm, a any new med order changes, however my FIL lived for 9 weeks on Hospice, and sadly, many do not live that long. It was nice that our Nurses did appreciate my chart notes though, and it helped to establish a repor that we had a good handle on things.
Yes, PamB 1972, we (the nurses) have to record every single medication, whether narcotic, anti anxiety, antihistamine or anything else, on the medication sheet and nurses notes. (At least at my hospice). Also any treatments given (oxygen, suctioning, etc.). We basically document everything we do to the patient and anything that is happening to the patient. Nurses are required to do this.
If you have a question about any medication given, it can be checked easily.
Hope this helps.
Private hire caregivers do not have this obligation but they usually creat a note book and write similar information. The hospice nurse will read these entries and write her own observations and instructions as the private hire does not have access to the hospice records. medications are usually dispensed in 1 - 2 weeks supply so it is easy to check the number remaining in the bottle if there is any doubt about their administration. Checking Roxanol (Liquid morphine) is much more difficult because the volume administered is .so tiny, for example 20mg is only 1cc given in a 1ml needless syringe. This is not usually abused but occasionally a family will claimed to have "spilled " a bottle
I just hate some of the hospice Nurse attitude presented here...
Sometimes they do..sometimes they don't..and leave to us to record the meds given...and in handwriting format...from my one particular home hospice experience..can't say about how other company's..individuals..only my experience of course...and of course they should ...and do ... check with the doctor or nurse practitioner before changing meds..increasing meds...but you must still be vigilant ...watch..and consider what is being given and when...many of these meds do cause loss of appetite...and dehydration...and in increasing amounts..if not necessary...can have severe..outcomes..or side effects...
The home hospice nurse here...after tripling the meds..per the nurse practitioners instructions...caused my brother to overdose..in pain from the increased Lorazepam and morphine on top of Fentanyl patch..his e pression..frozen..portrayed this..and that was his end...she was shocked...but alert enough to take the sheet of the meds with her..and amount given...that morning...
I did not object as what had been done was done..and expected that she was taking the records for review..as she certainly didn't intend for his overdose...
For my mother..she was in Florida..terminal..stomach cancer..but not at a hospice since none was available.at the time...it was a recovery holding place...can't remember the name.it was in Titusville...and they had her on IV meds and fluids via IV...was in a nice room...tv..with couch and room for family to stay by her side...and nurses were very attentive..and nice..but it was not a hospice...toward the end she was in a constant state of daze...and did not seem to be in pain at that point..as the meds were given in IV form and constant ..or slowly increased...and they recorded everything...and she passed peacefully..that is what any could hope for and expect...and a very nice environment...
Also..once your loved one has passed..all meds should be destroyed..and never..ever..accept any meds the nurse may offer you even with good intentions as one it is illegal..and two..you do not know what affect it will have on you..the nurse offered and left some Lorazepam for me..and I was repulsed since..I know it's affects..and can speculate what effect it would have on me..as I share...though with variations..the same genetics as my brother...and no way in hell was I going to take any med...even..especially..anti anxiety meds ..with known adverse side effects...though the home hospice nurse had good intentions regarding this...and I would never report her..
Wow, you're RUDE!
Yes, I vowed not to post on here anymore due to attitudes like yours. You've got it in for anyone related to hospice, don't you?
I'm not being a know it all nor am I having a "hospice nurse attitude", whatever that is.
All I wanted to do was answer Pamb's question. I think I'm qualified to do that since I AM a hospice nurse. Are you?
I am sorry that you believe your brother was killed by a hospice nurse. And I'm sorry he and your mother passed away. But don't come down on me because I answer a technical question for someone ELSE.
Maybe...one day...your anger will subside...and you won't find it necessary...a compulsion actually...to take it out on someone else.
And you would now try to insult me..saying it is my compulsion...actually...really.........and yes...he was..the nurse significantly increased the amount of morphine..Lorazepam on top of the Fentanyl..in a short time period....causing an overdose.....his jaw was locked..teeth clenched..pinpoint pupils..with a look of agony on his face...and the expression remained...though the nurse declared him dead...that is a state of overdose....and prior to this state of occurance...the minute the 75 Fentanyl patch was put on him on top of all the other meds all at once...in addition to the opioids...Lorazepam....caused a cascading effect..that would occur even in a relatively healthy person..even his doctor agreed with me...
And if you even read..what I have written...I never condemned the hospice nurse or nurses..but.....you have selective comprehension..focus....I wrote these things here to make others are aware...to pay attention..and to not accept without question what is being done...
The hospice nurse attitude I am referring to..is the attitude..comments..on this SITE..in past postings...that shoot down..are condescending....and arrogant...towards those that have posted their experiences...that they did not want to hear or acknowledge..that is what I am talking about..
And..no...I am not a hospice nurse...thankfully..and much more educated about things now...
And don't worry ...I have stated and made my point...and it is up to the individual to make sure their family members are getting the proper care..pay attention..read...watch etc..
So..I am done here..I am sure you are glad about that...
The two are one in the same.
Timeline:
hospicepatients.org/euthanasia-soc-of-america-to-natl-hosp-and-palliative-care-org
#minetoo #hospice #hospicemurder
My mom went on Hospice when she was already actively dying. If she'd been compis mentis enough to ask for food or water, I would have gotten the Hospice workers to address her needs/wants. WERE you a disinterested bystander, or were you simply not involved until things got serious and then you showed up to object? I'm genuinely curious.
If you haven't found it yet, please check out the Hospice Patients Alliance website
hospicepatients.org
It was started by a former hospice nurse, turned whistleblower. It is filled with facts and first hand accounts.
Also, we have many groups on Facebook. Please look for them and join our discussions. Search key words on Facebook, such as "Murdered by Hospice".
There are also some radio shows dedicated to exposing this and informing the public. One is The Vicky Travis Show.
The other two are on blogtalkradio:
Search for the Marti Oakley Show
And Hidden Truth Revealed.
For every one person you tell 100 people learn the truth. Keep telling what you witnessed. Let no one silence or shame you. You know what you saw. You were there.
To me, having hospice for a longer period of time would have meant more aide hours, more nursing and more help with getting things put right at the facility. But it was not meant to be. It was only when mom appeared to be in intractable pain ( psychic or physical) that my brother relented and agreed to hospice so she could be given morphine, which eased her breathing.
Did the morphine hasten her death by a few minutes or hours? Maybe? Did I promise my mother that she wouldn't die in pain? Yes, yes I did. I kept that promise.
Is there a problem with helping people die in peace, rather that having them die gasping for breath?
My mom had CHF and chronic pleural effussions. When my dad was diagnosed with Chronic Leukemia, she asked his doctor very specifically what kind of death that would lead to. He assured her that something else would kill him, and renal failure did.
My mom asked us all to make sure that she didn't die in pain, or gasping for breath. She was very aware, before her stroke, of what death from CHF looked like, as her sister had recently passed, on Hospice, at home, with her son administering the morphine. She wanted to spare us that.
My mom was hospice eligible for two years before we signed on. She was actively dying when we got Hospice in and they were able to give her small doses of morphine that eased her breathing, and anaxiolitics that kept her anxiety in check. Without Hospice, would she have lived another hour, week? I don't really know.
I just know that the only thing I ever promised my mom is that I wouldn't let her die in pain.
For all of you who regretted hospice for their parents (etc.), it was absolutely AWFUL to hear mom struggling to breathe that single breathe for hours. To clean her, change bedridden mom’s pamper by turning left/right - and seeing her Cringe in pain was Awful. Sometimes, when I read here, I have to force myself not to hope that one day you will Understand what pain is like when you’re dying. I do not want to wish this on anyone after seeing my mom go through this for about 2 weeks.
You all need to look deep inside yourself and be honest. Stop the blame game. What’s done is done. When my mom died without hospice, yes, I blamed her social worker who avoided our calls and voicemails (but had no problem calling me after mom died to offer her condolences.) I blame the insurance company who refused to allow this one time for mom’s doctor to do housecalls to just Evaluate mom. But I also accepted partial blame by relying on sis to keep me updated on mom losing hospice service 4 months earlier. Sis knew but didn’t say anything {her usual MO}.
I started another thread here where I expressed my concerns that my Mom got too much morphine and sedatives and died in advance.
Now I know it is true and it was my fault. MY FAULT!!!
Everyone seems to know how dangerous these meds are when combined, everyone I read about are careful so their loved one doesn’t get too much.
Except me!! My Mom had been living in a nursing home for the last 15 years paralysed from strokes sitting in a wheelchair.
Now she was dying from Pneumonia.
We couln’t believe it, she was in her bed and looked the same as she always did, awake but during some nights the breathing was strange.
We talked to the nurse and doctor and asked if they couldn’t try once more to save our beloved Mom who now had been without food or water for three days.
They accepted to try( later they admitted that they didn’t believe in it..)
Anyways, the last night I was sitting by her bedside and she had been breathing really fast for about 6 hours when I rang the nurse and she came and said my Mom needed some meds( morphine and sedatives), I think that eased her intense breathing a little but not much, the rate was still the same, about 50/min.
This stressed me out, I panicked and rang again, thinking what am I doing, it has only been 30 min since the first injection.
Someone told me it had to be 4 hours between the doses.
The nurse came and I said that I didn’t think it helped, and couldn’t she get some more, just a little? I CAN’T BELIEVE HOW I COULD DO THAT, I truly thought I was helping her!:( But it turned out to be the other way around..
I saw that it made it harde to breathe after this second injection, just the opposite to what I thought!
But I was in such denial, the girl from the nursing home came into the room and asked if I wanted to get some sleep and I said yes and said Goodnight mama, I love you, I hope you can get some rest now, and off to bed I went.
My mom passed away an hour later.
I feel so much guilt. It’s almost 5 years ago and it gets worse the more I understand that because of me my Mom died days in advance, totally awake and alerte and rhe worst thing is that she tried to show me she didn’t want that second injection.
But I was so used to taking decicions for her through the years and she often had that look on her face when I tried to help her, but this time it turned out to be she was right.
And it feels like I killed my Mom! The one person I had been taking care of and loved more than my own life.
I am totally devestaded.
I know that the nurse has the ultimate decision and if she said my Mom could have some more I trusted that she would benefit from it, be able to rest, not die!!
I don’t think there is anyone else in this world who made such a mistake.
I thought I was helping her..
Do you feel bad for not allowing your mom to face death gasping and in writhing pain? I wasn't willing to go that route with my mom. I'm sorry if people think that makes me a bad person. I think it shows that I was a compassionate daughter who honored my mom's wishes.