I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?
But I don't want a "body snatcher" though; that movie was very unsettling. And I don't want to become an alien.
BTW, good post and clever retort.
Still not over it, Becky. And I'm hiding the keys to the Escape before the next swap.
I have seen our Hospice do very wonderful things for people. They aided my best friend's mother when her terminal cancer brought her so much pain. They did not administer any pain medication, her Dr. did that. Again with that same friend's father when COPD and chronic lung disease ended his life, Hospice was there to ease the way, but they didn't administer drugs, the Dr. did that.
Now, what changed in the 12 years between her father's death and that of my mother-in-law? I don't have a clue. I do know that after spending 20 years of his time as a Hospice chaplain, my father-in-law trusted the people in that organization. He never would have allowed them to transport him and his beloved wife of 68 years to their hospital under the guise of a 'respite' for him, only to have his wife taken from us in less than a week. A Hospice nurse took it upon herself to change my MIL's visit from 'respite' to 'end-of-life', even though my MIL's health was no different than it had been for years. They went so far as to hasten the administration of Fentanyl and morphine when they were informed my MIL's daughters were on their way to see about the situation. Unfortunately, the Hospice personnel took advantage of their lack of knowledge about Fentanyl, morphine, withdrawals and the effects of said drugs. They took advantage of my FIL, my MIL, and their children, using lies and emotions as their tools.
So, you see, we've all had favorable and unfavorable experiences with Hospice. That doesn't mean that everyone who has a bad experience is lying or a troll. Nor does it make the 3 of you experts on what Hospice is or isn't. You want to find a conspiracy in the postings of people who lost a loved one to a branch of what used to be a good and decent organization, but cannot be bothered with an alternate conspiracy theory where a Hospice used a lethal cocktail to take out a woman who was looking forward to her upcoming anniversary with the only man she ever loved. Her Medicare benefits for Hospice care were about to run out, 3 nurses decided she was a burden to her husband and was dragging his health down, and she put them on notice the day before she was transported to the hospital that she was not satisfied with their care and was going to seek private in-home nursing care since she wasn't terminal, but still needed assistance.
As to the frequency of someone's posting making them a troll. I noticed at least 1 of you has been posting on this group for over a year. Just because you have nothing better to do than argue with every poster who has a horror story to tell, doesn't make them a troll. Perhaps you should use a mirror to find the true troll. This was my first time here and it will likely be my last. I don't mind expressing different opinions, but I won't participate in a discussion group with bullies such as you.
I read 11 pages of posts and pretty much every one of you comes here to argue and accuse people of lying or demanding proof of their experience. Why don't you open your minds to the possibility that there are alternate stories other than your own and they are REAL? You can't say *no* Hospice hastens death any more than someone else can say *all* Hospices hasten death.
One also needs to realize on the forums there are professionals to which Hospice has not been their first rodeo, but they have been on 100's of rodeos regarding the end of life. They have first hand knowledge, and know pharmaceuticals.
Then there are writers such as myself who is not in the medical field but who does a lot of research, thus will digest what is written by the Mayo Clinic and the National Institute of Health, along with other research sites. I do my fact-checking.... even some will disagree with me, that is fine.
If one feels their love one was murdered, I rarely if ever read where the authorities are called in to investigate this death. Nor do I read about malpractice lawsuits regarding end of life care.
When it comes to the end of a journey, a person will pass on the same time table whether they have used Hospice or not. Thus without Hospice there is usually a lot of pain and fear.... with Hospice, the person passes calmly.
I can assure you that I am still the same login and don't find a need in creating a new one. I just don't happen to read or look at this site often because what you think about my Mom's life being taken by hospice staff doesn't matter and I have other things to do besides this blog.
And Dorianne glad to see that your kitty is healed and out if its cone. I mean that in the most sincere way. I love all animals.
Not sure why you decided to call me a liar and say you call them as you see them because I say something different than you, as my only experience with hospice was them murdering my mother. I don't choose to explain to you about the steps I have taken IRT this as you really aren't asking because you are interested but because you want to argue.
My journey of trying to share my personal experience with others is for no other reason than to let those who are interested know that this IS happening. If I had known this information, my Mother might be alive today.
Have you taken the time to check out any of the links provided by several in this thread or are you just content to accuse those who believe differently than you as being liars, trolls or whatever else you choose to say. I'm not attacking your experiences or beliefs and find it interesting that you don't think anyone should post or say something different. It's called freedom of speech for all not just some.
I have never said that I don't believe that in cases where someone is in so much pain and dying shouldn't be given comfort measures but that it should be the patients rights to make that decision and in my Moms situation that was absolutely not the case. You don't know me. You don't know my Mom and really don't have the right to judge under these circumstances.
One more point - if a person is in a coma with use of opioids they aren't able to ask for food or water so your comment earlier that they are given food or water if they ask would not be possible.
I wish you all well and I will continue my mission if trying to change what is being done to the elderly.
Also it's important to note that "terminal sedation" and caregiver abuse are two different subjects.
Here are excerpts from the article, and a link:
nytimes.com/2009/12/27/health/27sedation.html
("There is one ethical guidepost for all the protocols: Terminal sedation should not become so routine that the end of life is scheduled like elective surgery, for the convenience of the doctor or the family, or because the patient’s care is no longer economically viable.
Physicians occasionally feel pressure to turn up the medication, said Dr. Pauline Lesage, Beth Israel’s hospice medical director. The pressure may come from weary relatives, who say, in effect, “Now it’s enough; I just want him to disappear.” )
More...
(“There should be ambivalence,” said Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College. “If it became too easy and you weren’t ambivalent, then I would really start worrying about it. But the fact that you’re worrying about it doesn’t mean you’ve done something wrong")
More.......
("Terminal sedation would lead inexorably to death, but “not too quickly,” they said. They derided the rule of double effect in this context as a rationalization, a subtle cover-up, of what they called “slow euthanasia.”
Even a simple morphine drip, they said, could put patients into a stupor at the right dose or when combined with other drugs or when concentrated by the inefficiency of a damaged liver or kidneys.
“If the morphine drip becomes a code word for slow euthanasia,” they wrote, “laypersons may be increasingly wary of the other uses of opioids.”)
I do find it interesting whenever someone says that Hospice had murdered their love one, the police are never called in. I have found that some of those who say murder the loudest were family members who were not hand-ons care, showed up toward the end of the journey, and needed to blame someone or some thing for the passing. It's just human nature.
There are exact facts when ever there is a discussion on medicines given. That in itself cannot be changed.
It's also kind of hilarious that you don't see one iota of irony or hypocrisy in the notion of "slandering" someone ANONYMOUSLY ACCUSING A SPECIFIC GROUP OF PEOPLE OF MURDER.
These other methods can allow the patient to use a lower dose of pain relief meds, of any type, so that they can stay lucid, if they so choose, perhaps in an advance directive or a living will.
As for hidden camera's, if you are using one and record the commission of a crime, the fact that there was no permission given will not matter in a court of law.
Recording the commission of the crime will take precedence, always, with any recording, no matter what the privacy laws state.
Personally, I think that hidden cameras should always be allowed in any situation where a person may be helpless and vulnerable and open to the possibility of abuse.
As mentioned, and I can NOT emphasize this enough. I have seen footage, where the seemingly most kind and caring hospital worker was the one who was secretly inflicting the most damage.
Also, often the ones who are the most likely to commit such abuses and crimes are the ones who would most loudly protest the use of such cameras.
Personally, I could never say whether someone on a forum is a troll because I am not psychic and unless I have proof that someone is a troll, referring to one that is proven not to be could be deemed slander or libel.
I calls 'em like I sees 'em.
Instead of a camera, if you feel your love one is in harms way, move your love one to another facility.
Regarding morphine, if you ever had major surgery, guess what was easing your pain? Chances are it was morphine. I had a morphine pump. The same amount is given to a surgery patient as it is given to a love one to easy their pain on their final journey.
To add to my above comment. I found this thread by accident. I was not looking for this type of thread, but after seeing the denial about over medication as associated abuse, I had to post.
I am glad I found this thread. Perhaps my posts will help others.
I am sure the information you provided will also help those who feel their relatives are being overdosed on pain meds.
I always advise people who are being taken care of in-home by hospice personnel or even at a hospice to install a hidden camera.
In my profession, I have viewed hidden camera footage of abuse cases at nursing homes or hired in-home caregivers. It is an eye opener.
Not only physical abuse but thefts such as rifling through the house, while the person is heavily sedated and no family members are around.
Sometimes, too, it is the worker who seems to be the sweetest and most caring while the family is present that engages in the most vile behaviors.
So you and others who are suspicious of maltreatment need to go the extra mile to install hidden cameras with video.
There are many very tiny cameras available. It is the only way to avoid the He said/she said scenario.
The video and audio will be proof positive of abuse, or it will put your mind at ease. End of story.
For instance one time, a camera was hidden in the glass eye of a stuffed bear.
The hidden camera is the ONLY way to know what the patient or the hired caregiver is doing, and if the claims of the patient being aggressive and violent or a danger to themselves are actually true about the patient.
I have no issue with people trying to explain possible legitimate reasons for the over medication. I only take issue with people who are overly defensive or who insist on calling you or others a troll for mentioning your concerns.
They are valid concerns.
I asked for morphine and felt so relieved for him when I could see the effect it had.
To not use something to relieve the anxiety of dying would have been intolerably cruel.
I'd like to add that those who feel negatively about hospice should do something about it instead of posting on a forum. If those people feel that strongly, why don't they lobby? Write articles that reach wider audiences? Just complaining w/o doing something just doesn't cut it in my book.
And I still don't see any responses to the multiple questions about what the police or the lawyers said, either. No, I don't believe you. Because if you really did go to lawyers or the police, you would absolutely want us to know all the gory details about how unhelpful those people were. If you're going to lie, I'm going to call you out. If that makes me "vicious," so be it.
I've been a nurse for 39 years.
Let's talk about "chemical sedation". I had an elderly demented lady on hospice. She and her son lived in an apartment. She screamed at the TOP of her lungs for 48 straight hours! Hospice was ordered by the doctor but the son refused to have the nurses give any meds, saying that his mother wouldn't eat when medications were given. So we sat through 8 hours (each shift) of screaming. The woman was worn to a frazzle. So were we and all her neighbors. Nothing we did would calm her. She was wild but fortunately imobile.
On the third day, the son finally gave in, we gave her an anti anxiety medication and she fell into a deep sleep. NOT because the medication was too strong, it was because she had been out of control screaming for 2 days without sleeping. She was exhausted. It was mean to deny something to help her.
My 95 year old mother (stage 6 Alzheimer's) frequently gets agitated and screams out or hits. She takes a benzodiazepine (anti anxiety drug) to "control" her agitation. She is calm and easy to talk to now when we visit. She is being "chemically sedated" but it benefits her and those around her.
Do you remember having to pick up your baby because he couldn't soothe himself? He'd just scream and cry until you intervened by holding/rocking him. That's what we are doing with our emotionally out of control demented patients that can't self soothe. Medication helps them relax.
I've also sat at the bedside when a terminal person is dying who is terrified and/or in intractable pain. These patients CAN'T regulate either their anxiety or pain. Watching a person who is moaning, crying, thrashing about, wide eyed in terror MUST be helped to calm down, just to be humane.
Maybe you've never seen these sort of things but it is merciless to not intervene to relieve them of their suffering.
So, better a dying person be calm, or even asleep, than the uncontrollable terror-producing alternative.
I've been at many deaths but have never killed anyone. But I have relieved a lot of discomfort.
I've had hospice patients that were not close to death (terminal but not imminent) and were on service for pain control or intractable nausea and vomiting. In the case of pain control, it is our duty to keep them as pain free as possible (that's WHY they sign up for the service), so they are medicated with narcotics. It's great for relieving pain. What happens to a person who gets rid of pain...they can finally get some rest (sleep). Also, when someone doesn't feel nauseated or puking their guts out anymore, the same thing happens....they can finally sleep.
I hope my experiences have shed some light on the hospice subject.
I am unhappy when people are attacked for stating their point of view. And although I certainly do challenge, I do it to question and to clarify, not to dismiss somebody's opinion let alone to belittle their beliefs about what happened.
Such-and-such a person states that such-and-such a thing happened. There are gaps in the account, there are ambiguities, there are sometimes conflicting, even mutually exclusive, assertions. Is it really impossible that the person's understanding of what took place could be incomplete, or even wrong? Aren't you interested to know what the evidence is?
Set against that, what is being alleged is not negligence or error but a grotesque abuse of a position of the greatest possible trust. The allegation is that, in consideration of a comparatively small amount of money, at the behest of their employers, people who have dedicated their professional lives to the comfort and protection of their patients instead of providing that care intentionally and systematically kill them. There is no more serious accusation. To expect it to go unchallenged is not reasonable.
Further to underline the gravity of the issue, Heather, you say: "However it is wrong to do anything to hasten it [a person's death]. Only the patient has the right to make such a decision, not medical personnel of any type."
Actually, no. In most states, not even the patient has that right. The law entirely forbids the decision; and in my personal view the law is right to forbid it because there is a line to be held.
There is a radio show every Tuesday night at 8 p.m. EST about what happens in some cases. I can't speak for everyone's experience with hospice and don't attempt to. Listen if you care to. I wish someone had shared with me this information before we lost our Mother. Marti Oakley TS Radio: Hospice Survivors and Victims with Carly Walden Tonight is with Alex Schadenberg the executive director of the Euthanasia Prevention Coalition and International Chair of the groups working to stop euthanasia and assisted suicide. (917) 388-4520 to call and listen if interested.
Until it happens to people, they don't believe it and therefore attack anyone who had it happen to them. This forum is for everyone to make comments - not to be attacked and challenged about their experience or called a troll. It's like if we don't agree with what you say - we are misguided or crazy. Really? I don't criticize you for your story or your beliefs.
I am so sorry for your experience. Trust your gut. If you feel your mother was not treated properly, there are agencies you can report this to.
I encourage you to report your experience because so few people bother to, often misbehavior goes unnoticed and under reported.
Your mother was likely soon going to die, soon. However it is wrong to do anything to hasten it. Only the patient has the right to make such a decision, not medical personnel of any type.
Fentanyl and its analogs are a very strong opiates that can cause serious problems for someone who is already having difficulty breathing.
Here are the listed side affects of this opiate form a link at Web MD.
https://www.webmd.com/drugs/2/drug-6253/fentanyl-transdermal/details
There is a behavior engaged in by a small number of negligent medical personnel. It is called "using chemical restraints" to keep a difficult patient from causing problems for any type of medical staff.
Using chemical restraint means using strong drugs to keep the person asleep or immobile. In this case they are using a much higher dose than is needed to alleviate pain. They also use it too often.
It happens. Yes it happens, no matter what some people are saying here, particularly if your mother was a difficult patient.
If you feel your mother's death was hastened due to negligent care, get her hospital records and file a complaint.
There are many many excellent hospice care personnel, but too many of the negligent personnel are flying under the radar.
Sometime, too, in front of the sick person's family the medical personnel will act loving and kind, but when the family is gone, they can be very negligent.
Anyone who does not want to believe this can simply go to a court house and look up all the numerous medical negligence cases. Those who are in denial about such abuses will be horrified.
I know I am late to this thread, but perhaps it will help others reading it.
I can not believe that someone was so defensively calling for this thread to be deleted. If they work in the medical profession they know about using "chemical restraints."
Perhaps it is a dirty little secret no one wants to get out to the general public.
Also, after a death occurs due to neglect, it may be difficult to prove, and it is even more difficult to find an attorney who will be willing to take on a case.
Even if one does, it is likely to be an extremely expensive proposition. Therefore unless the person is very wealthy, most lawyers will discourage such lawsuits.
For those who suggested going to the police. Once a person is dead and buried, particularly a very sick elderly person, the police will most likely not get involved.
Even, if the elderly person is still alive and the family goes to the police, the police will suggest getting and elder care attorney involved and engaging in a civil suit.
Also for those who suggested taking out a full page advertisement in a paper outing the hospice, that would only expose the family to a very expensive libel lawsuit.
These cases of neglect are very difficult to prove after the fact and sometimes during the fact.
At this point, I'm ready to beg for hospice to ease my father's pain and suffering. He's obviously experiencing nothing but pain, fear, anxiety, and negative feelings; I can see the pain and pleas in his eyes, BEGGING for relief. And I hope I can convince the doctor that it's time for him to have that relief - permanently.
My stepmom died of breast cancer in hospice. The staff were amazing. You could see the love and compassion they felt just in the way they were with her. You could sure see it in their very real tears after she died. And they were so supportive and communicative to us as family....I will forever feel a connection with those nurses, even though I'll probably never see any of them again.
The thing about my stepmom was, she WANTED assisted suicide. Desperately. She posted a notice on her door absolving anyone who shortened her life with medications that eased her suffering. One of her last acts was to make a video submission to the parliamentary committee on assisted dying. She was in so much pain. She begged every one of us to kill her. She just wanted to be free.
Then I read stories about people who think their LOs were murdered....people throwing false accusations around based on total misinformation about how the medications work....trying to frighten other people away from hospice....
I am absolutely certain I would want to be in hospice care when the time comes.
I see my father deteriorating daily, and I want relief for him. At this stage, there is no way he could ever make a comeback, and his life is a living hell right now. I even asked for more regular morphine today. It's just so painful to see him struggle.
I found Atul Gawande's book "Being Mortal: Medicine and What Matters in the End" to be very educational. I've loaned my copy to a couple of people so far and they both found it meaningful. I recommended it to my book club, and every single person was glad to have read it (and that doesn't happen real often!)
As a surgeon, Dr. Gawande is disappointed in medicine's approach to death and dying, and he has some encouraging examples of how this is beginning to change.
Jeanne makes a good point - why didn't a medmal attorney take the case? Good ones obtain records, have them reviewed by a practitioner in a similar field, and base their actions on that recommendation. Good attorneys don't take cases that lack a medmal foundation.
Furthermore, there has been one situation in my life when hospice was desperately needed, and a second occurring now. It's absolutely necessary to avoid further pain, confusion, despair, agitation over recognition of impending death.
I will never understand why people don't educate themselves on the death and dying process, ask questions at the time, and refrain from ranting on and on about hospice. Everyone needs to self educate and ask questions of medical practitioners instead of making uneducated assumptions. Do you people really feel qualified to opine on medical issues? On what education do you base your expertise?
I am so thankful that I already had my father in a SNF which also handles Palliative and Hospice Care so that we were able to segue from one to the other in the same facility, with the same outstanding care.
And while I love my father and already mourn and miss the person he was, I also want to see his suffering ended. He has no quality of life now, it's hard for me to see him suffering, and I'm relying on hospice to help guide him through this maze to a peaceful end.
Allowing, let alone encouraging, him to believe that he stood by and allowed his wife to be killed seems cruel to me.
You have taken your mother's medical records to ... whichever authorities. I *hope* you have discussed them point by point with the hospice management? I hope you have been through them with your mother's former GP?
But no matter what explanations they or anybody else can offer, or what concerns they promise to take on board and address, they can say nothing to persuade you that your mother was not intentionally killed with the aim of saving Medicare some money. Not even very much money, at that, not in the scale of things.
I don't think there's anything more to be done except hope that time and prayer will bring you all comfort.
A. Never.
Sometimes people overdose accidentally by taking too many prescription PILLS, or by mixing them with alcohol or illicit drugs.
The dangers of fentanyl mainly revolve around unregulated, illicit street fentanyl PILLS or POWDER (often laced with other opioids like heroin)......or street carfentanil pills or powder (which is heroin laced with elephant tranquilizers).......or from people trying to get high by smoking or chewing stolen fentanyl patches.
I trust your LO was not smoking or chewing the patch.
Alternatively, if a patch were accidentally heated while on the skin, such as from a heating pad or electric blanket, it could release an excess of fentanyl.
Even my cat had fentanyl patches, which were used in combination with buprenorphine. As the vet explained, fentanyl patches do NOT provide complete pain relief on their own, and need to be ACCOMPANIED BY another painkiller.
My cat was old and sick, but it didn't kill him. Cancer WOULD have killed him, but since we're allowed to euthanize suffering animals, that's what I eventually did, rather than let him starve to death because of the tumor in his jaw.
I would also like to hear more (or even some) details about your attempts to get the police to investigate this matter. I'd love to know what specifically they told you after listening to your concerns and/or investigating the matter.