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Well I have been struggling with this too. My dad was doing great when hospice came in. Menally sharp with minimal complaint of pain. He died about 3 days after they started him on morpine. I had left the room while he was asleep and comfortable and was called back 20 minutes later by the nurse saying it was time. I wish I had checked the morphine dosages they were giving him and making sure it was being administered correctly. I keep feeling like I should have stayed and watched. I know he was going to die but didn't want him gome until God was ready. When I got back to his room he was gasping weakly and it lasted for 15 minutes at least. Something just didn't seem right.
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Reflecting on things.

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.
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It is not worth my while contributing further to this thread but I will point out that Funeral Directors are very good at recognizing whether a patient is dead or not.
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First off I am sorry for your loss and second I do believe you could be correct that they did speed up the process, unfortunately we don't know what everyone's life expectancy is so we have no way of knowing how quick they could have. I had the same experience with hospice and my mom, we put her in hospice Feb. of this year but it was an in home kind. On March 8th my dad found her grey in a chair I shook her and hit her chest and brought her back , a hospice nurse came out that night and when we admitted her in hospice we were told if she had an incident like we had they would take her to their care facility they did not. The next morning another nurse came out to check her vitals my mom was talking not much but said she wanted to stay in bed okay the nurse decided to put the humidifier on her oxygen but she didn't know what she was doing and she shot water up my moms nose down her throat and my mom went into shock right in front of my eyes! The nurse then told my dad and I she would qualify for the care center but she may not even make it in her condition (which we feel the nurse did) My mom fell asleep within the hour and never opened her eyes again she passed that evening at 8 pm. I truly believe hospice dropped the ball on my mom by not taking her the night she flat lined on us and I believe they took days maybe even a couple weeks away from us. But I will never know what God's plan was (I am religious I understand some are not so I don't want to offend anyone). God may have just planned on that being her day to go or they advanced it and she went sooner then his plan. But the thought still lingers that she could have been with us just a couple days more. I will never know but it still breaks my heart.
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Yes Veronica..91..long after they have been placed in a body bag and freezer..if they even bother to check...and there have been many cases of then finding that the person struggled to get out...froze to death...or awoke as they are about to be embalmed..read NIH...and medical journals...especially where overdose..or death occurs in cold temperatures...but...being declared dead in home hospice seems to be tricky..since they do not hook you up to monitors...just declare you dead if they aren't able to determine pulse..breath..which optiates and anxiety pills reduce to negligible amounts..I think the Jewish people have the right idea...they have someone stay by the deceased person for days...to keep company..just in case the person wasn't really dead..and FYI..there is warning about mixing Lorazepam..Morphine together for the elderly and sick...liver compromised..because their bodies can't efficiently remove it from the system...and it causes loss of breath...muscle seizure...ie..given the cocktail..the person gasps..struggles..the..given more or the cocktail..as nurse says this helps breathing...and then ...they are dead..ie...stops all ability to breath ...and slows heart function...so they die...doesn't sound very pleasant...again..I am all for making a person comfortable...and have their last days as painless as possible...and to have them go gently into the night...but seems death is never easy or gentle....
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how do you..they determine this?

"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...
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Tryingmybest...I agree...and Amieri..I know exactly what you mean...this has been my point throughout..and what I experienced....

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...
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Question for this forum: If a patient is in home-care hospice, is the nurse required to chart the meds that she gives to the patient?
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Pamb1972, yes of course, it is my understanding that home Hospice Nurses do have to chart Every Medication they dispense, and any reccomended med order changes that they make, but the family caregiver is often given free licence to dispense medication at their discretion, as they are the ones doing the day to day dispensing, and often have a better understanding of the patients actual needs in a 24/7 hour day.

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.
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I will break my silence that I've vowed to keep from this particular topic to answer Pam's question.

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.
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Every contact with a Hospice patient has to be documented, even if it is just a phone call. these days it is usually done by computer and it is not possible to change that record, it stays as written, however if the nurse feels she has entered incorrect information she can add another note correcting her previous note.
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
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So nice of you sueC1957..to break your silence and bestow your wisdom upon us....

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..
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Lokiloki,
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.
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Suec1957...and yes..I considered your remark rude..you just had to state that you...break your vow of silence to answer the question...couldn't just answer the question...making the statement in itself says you consider it beneath you..but..you will answer the question..

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...
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The Euthanasia Society of America changed its name and merged with the National Hospice and Palliative Care Organization
The two are one in the same.
Timeline:
hospicepatients.org/euthanasia-soc-of-america-to-natl-hosp-and-palliative-care-org
#minetoo #hospice #hospicemurder
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Yes! You are right . I had my mom and father in law both talking and responsive and as soon as they came in the hospital , they were both unresponsive . The hospital starved them both. I remember they kept asking for water... kept on asking but they wouldn’t allow saying that tests would be done! And they didn’t do any tests! So yes hospitals and hospice accelerate the dying process!!
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Yes my Father was staved to death also and also kept asking for water. He was 90 and alert. Believe that Hospice and Palliative care are the same thing. Body not a cash crop anymore for the doctors and hospitals so stave, dehydrate,administer morphine to slow down breathing. All cruel form of euthanasia, done this way because euthanasia not legal in our state or not yet.
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126, so, why didn't you discontinue Hospice?

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.
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Excellent question BarbBrooklyn glad you asked. Dad died on November 2nd 2015. I am an only child and was by my Dad's side 24/7. Always made sure he got food and water when he asked for it. Problem was that my husband was diagnosed with pancreatic cancer in May of 2014. He had chemo treatments at Sloan every other week. 66 chemo treatments in all for pancreatic cancer. Each treatment was 3 days each. Would take a break from Dad to go to New York with my husband to be with him during his treatments. Also had to get a babysitter to stay with 91 year old Mom who was living with us at the time because of dementia. When I was in New York with my husband for one of his treatments (in Oct. 2015) Hospice nurse left a message on my cell saying that Dad was showing signs of pain so they were going to administer morphine. I trusted them but when I got back he was in a comma (eyes were half open). Never ate again or drank again. He was like that for about 10 days. Then died. For the 10 days they kept giving him morphine every so many hours. Every time they gave him morphine tears would run down his face. No hydration for 10 days. When I said I was up-set hospice doctor said that he was 90 and lived long enough. Said it right in front of Dad. Hearing goes last so I was extra up set with the doctor. Now I know that one chemo treatment I went into NY with my husband I should have hired an aide to go with him instead and stayed with Dad. My husband died July 28th 2017 after we got another opinion from the local hospital and found out the he really had esophagus cancer that spread to the pancreas. Sloan misdiagnosed him for 66 chemo treatments and then changed him over to esophagus chemo treatments for the next 12. So 78 chemo treatments in all. Sloan also gave him an esophagus stent which cut into him and he started to bleed and throw up buckets of blood. So the stent is what really killed my husband. Yes BarbBrooklyn I feel so stupid. I wish I had sisters and brothers so that I had someone else to lean on.
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Thanks to all of you for sharing your stories. Speaking out is the only way we will be able to stop these murders.

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.
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Barbrooklyn I am so sorry for the loss of your Mom Aug. 2017. Looked at your profile and saw that your Mom died one month after my husband died of the esophagus stent. I does not matter how old someone is when they die old or young like my husband but still sad. Sorry I did not mention this in the post when I answered your question but still trying to keep my head above water and having a lot of trouble with my now 93 year old Mom. Prayers to you and everyone else here.
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126, I'm so very sorry for your terrible losses and for your continuing issues with your mom. Being an only child must be dreadful as your parents age and become frail. Again, I'm so sorry.
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Cher, I'm assuming ( or maybe I shouldn't) that your dad has a life-limiting diagnosis that made him eligible for hospice. In my mom's case, she had been " Hospice eligible" for two years ( due to Chf, pleural effusions) prior to us actually enrolling her. My brother refused hospice at that time; we did palliative care, which meant we knew we weren't going to cure anything.

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.
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Reading all these stories makes me think OMG the morphine they love that for the sick. My mom's last day it was "give her morphine" over and over they stated that and stressed that to me and my dad and I did I wish we hadn't but we thought we were making her comfortable because her breathing was so erratic before we would and would calm down. I am sick thinking about that day no one should have hospice and go it alone we did because our hospice had too many patients for them to stay with my mom.
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Trying, your mom was dying, yes?

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.
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We've had similar discussions and I know what my parent wants. I've seen him suffer enough over the last decade and a half; I would never continue it.
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We couldn’t get hospice when mom was finally dying. Too many red tapes. She had several close calls at death’s door. I only knew she was very close to the end when posters here told me so.

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}.
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If you would like to connect with others who have also experienced hospice (and other medical settings) murder, go to the Facebook page: Exposing the Invisible Culture of Death in American Health Care
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No one has ever done what I did when my dear Mom was dying..
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..
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Karin, dear, died in advance of what? If I recall, your mom had a terminal illness, was in pain and and was actively dying, yes?

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.
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