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?
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 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.
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.
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.
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.
I calls 'em like I sees 'em.
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.
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.
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.
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 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.
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 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.
Still not over it, Becky. And I'm hiding the keys to the Escape before the next swap.
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.
I do not see the value in the last five comments in response to Bentherdunthat. The self-perceived witty reparte, does not reveal itself in a good light.
This topic is not a joke.
As for those who are insisting that someone who believes a elderly hospice patient was given an overly aggressive cocktail of drugs in order to hasten death, should simply contact the police. ....
....Well, these folk need to do their homework.
It is very difficult to get the police to investigate the death of an elderly and ill person in the care of legitimate hospice workers.
I think most reputable hospital personnel will already know that.
The better person to get involved would be a lawyer, particularly an elder care lawyer. They have horror stories to tell. Or better yet, just go down to the court house and take a look for yourself.
Not every one can afford the high fees such a lawyer would charge, however. So that suggestion is not within plausible reach for everyone.
The problem with hospice personnel and medicare CNAs is that they only require a certificate that is granted after a few months of minimal training. Also they are not highly paid. Some barely make more than minimum wage.
Thus there are many who consider it a calling and yes, those are angels, but there are also many more who only consider it a job.
Since the pay is so low, and since there is a shortage of people willing to do such work, the field does not typically attract those who consider it a calling.
It many times attracts those who only need a job and they may not be the best and the brightest or the most caring or the most patient and kind and honest types.
Also, there are six states that do not require criminal background checks for nurses or hospice workers or CNAs, and that can lead to obvious problems.
As the NYTs article I posted mentioned all the doctors mentioning, the issue needs to be questioned, otherwise we lose our humanity.
There are people who are over medicated and therefore die because someone considers them a burden.
It happens, and it should be discussed, and discussed openly and seriously.
She was living in a nursing home where she took ill suddenly and I was contacted by the staff there telling me she had been found unconscious in her room and was being taken by ambulance to the hospital. I had just gotten through talking to her on the phone a half hour before the call. I had thought she sounded funny. I even phoned her back right away cause I was worried about the way she sounded.
So, I rush to the hospital where the attending emergency room physician tells me "we think your Mom is passing" I phone the family, most of us gather and are told it's just wait and see. I say to the doctor, you told me she was passing. He says"I can't tell anyone when they are going to die" They take Mom in for a Cat scan to see if she has had a stroke. So slowly everyone leaves except me. I stay for a while and then leave asking on my way out to keep us informed. Next day Mom has been transferred to a
private room. When I arrive, nothing is being done for her. She isn't hooked up to anything. No fluids, nothing. I go to the nurse's station and ask what's going on. They immediately get into high gear, come scrambling into my Mom's room, hook her up to an I.V., antibiotics etc. Then the head nurse comes in and says to me, "you know our staff here is good, and nobody has done anything wrong" Like I care. I just wondered why nothing was being done for Mom and why she seemed so much worse. That afternoon the neurologist comes into Mom's room and tells us that the cat scan showed no brain bleeds, no signs of stroke but they are scheduling her for another one the next morning. The other doctor had said Mom was paralyzed on one side. The neurologist grabs Mom's hands, both sides and says "See, she has grip strength on both sides, she wouldn't if she was paralyzed" I stay for a while and then leave. My cell phone rings on the way home. It's the first doctor telling me the opposite, That there is nothing they can do for Mom and we should start comfort care. So, I come back and stay the night with my Mom. Longest night of my life. Mom's breathing is horrible. It was a hellish night but I wanted to catch the doctor in the morning so I stayed.
The doctor comes strutting in, in the morning. His manner very cocky and full of himself. He proceeds to throw the covers off my Mom roughly. He says "look at her, why is she so skinny?" Like it's my fault somehow. "Then he pulls her eyes up roughly and says "there is no life in those eyes, and listen to her breathing, that's a death rattle" He says "if I send a person in her condition upstairs for another cat scan they'll think I've lost my mind" "I advise putting her on comfort care immediately" I say to him, well I can't make this decision without discussing it with my family. He says " well, I'm leaving in an hour and I have to sign off on this so you better decide." I tell him I'll phone my brother. I go into the hall for privacy and this doctor is watching me like a hawk. I wake my brother up and ask him what he thinks we should do . He's half asleep, groggy and says "yeah, do it" obviously more concerned with going back to sleep. So there I am alone, with this arrogant doctor breathing down my neck, no family there to support me having to make this huge decision. So, I did what I thought was best at the time and said yes, start her on comfort care, not knowing if I was doing the proper thing, but having no one to advise me differently, thinking about what the neurologist had said the day before and what this azz wipe doctor is telling me now.
Did I do the right thing? I'll never know and to this day it haunts me. I know my Mom was very depressed and had the various ailments that had made us decide to put her in a nursing home to begin with and I know she had voiced that she was ready to go on numerous occasions. This sudden decline had happened suddenly and no one will ever know what brought it on. To this day, I often wonder had she been given more time and treatment, maybe she would have bounced back. My gut tells me no but who knows. My Mom lingered there in hospital for a week. She never really regained consciousness, never spoke again except for one horrible day when she started to moan and cry and I held her and kissed her face and told her I loved her and that it would all be over soon, then they came and gave her more morphine and she never really woke up again after that.
So, I don't feel that my Mom was murdered but I do feel I was coerced into something I was not totally ready for and I have to live with that every day. So, I am not going to draw a line in the sand here on how I feel about the people on this thread and if you really are suffering because of the circumstances surrounding your loved ones deaths, I do sympathize. I apologize for the long story, but I feel I had to tell it in full to make my point.
Thank you for posting your story. I am sure it will help others.
I am sorry you had to go through that.
Your mother was lucky to have you there doing the best you could given your circumstance.
I never post on any hospice threads, but read your story about your Mom, and how very hard it was for you.
The azz wipe was a real jerk.
Unfortunately, many if not most people who come in here believing their loved ones were murdered - and this goes back YEARS on AC - aren't interested in facts, or in having their misinformation corrected, and never have been, even when it's done with great respect. They just want to believe what they believe and never be questioned, never be challenged, never be corrected. So these threads devolve, yes. That's the internet for ya.
And yes, I did read the article, twice. I would love to have an intellectual discussion with others about the nuances and grey areas discussed in this thinkpiece. Unfortunately, as you have done, people cherry-pick what they want to see and hear, or what has the appearance of backing up their claims and beliefs, while ignoring the whole context, which makes any real discussion impossible.
I reiterate, if you really believe there is murder going on, do something about it. Some of you Americans seem to be obsessed with lawyers and lawsuits, but GO TO THE POLICE. Don't keep saying, "Oh, there's no point," like EVERYONE seems to do. All I ever see are excuses. If ALL of you are just going to make excuses and not take any real action, then no, they're not going to investigate. MAKE them take you seriously. Get a group together and force the issue. Until somebody does something more than sitting at home behind a computer, anonymously bad-mouthing health care workers and whipping up fear and hysteria, then no, I don't take it seriously as an issue.
That's about as much as I'm ever going to say to you. So. Carry on bravely.
That doctor that spoke to Gershun needs to grow some compassion.
If he felt as he did, there were far kinder and far more professional ways to address the issue.
Perhaps you can report him to your state medical board. Likely there will only be an investigation and nothing will come of it. Still it will stay in his file for future reference and it may spur him to learn to acquire a more professional and compassionate beside manner.
I think those of us in caregiving and decision making capacities may often second guess our decisions; it's a reflection of the level of responsibility and compassion we have.
Dr. Arrogance does not fall in that category. I had a neuro like him when I had my stroke. What a donkey's posterior! He was soooo impressed with himself, so arrogant, that after a few sentences I decided he wasn't worth listening to and that I would follow up with a REAL neurologist after discharge.
I've read your post a few times, and think that you did take the appropriate action. Your self inquiry as to whether more time would have made a difference is one which I think a lot of us face, and there is no way of knowing. We do the best with the information we have at the time.
That's the only question I had left in my mind after my father died, but it wasn't any professional medical personnel. It was someone from the private duty firm I hired, a firm with a good reputation nationally. But this woman didn't meet that standard, and she lied about her experience with dysphagia and pureeing. Instead of being experienced, she just "knew" that dieticians handled it in the SNF she allegedly worked at for hers. Even that I questioned after I observed her manner.
(As an aside, she charged right into the bathroom just after Dad got up, w/o introducing herself. She was told to "GET OUT"! Dad was NOT pleased - he didn't even know who she was.
I didn't want to hover over her as she was (pretending, as I later realized) to help dad eat his latest pureed meal. Two hours after she left, in a snit and a nose up, snidely glared at me (since I caught her in a major lie), Dad began to go downhill. I still wonder if she did something that neither Dad or I caught.
The hospital staff wasn't the best either, and I was glad when we transitioned to a SNF. But the damage was already done, or rather, Dad was too close to reverse his condition.
There was never any question in my mind that the SNF, at which we also had PC and hospice care, did anything to advance his demise. In fact, I was the one asking for morphine when I saw him suffering so much. That last week was agonizing for both of us; if I was in charge, I would have upped the morphine so he could at least pass peacefully instead of fitfully.
And I agree, have said before and will say it again, the way to address any perceived inappropriate action in the medical community is not to b**** about it on a forum. Pretending to "alert" others is meaningless; go to work and address it legally.
When I was younger I was very politically active, and worked on local and national campaigns, on anti-war and women's right's issues. And I did see changes, through grass roots and lobbying. There weren't any such things as Internet forums then, but even so, I still believe that action speaks louder than words, or in this case, repeated complaining.
The reason I told that story, the complete story, well not even really............I could have gone on. But I just wanted to give my support to the people on here who really do feel like their loved ones were not treated properly. While I know that there are the trolls who love to stir things up, I have reread some of the posts on here and I think there is sincerity there and that perhaps these people do have a legitimate take on the situation. I have, as I stated real issue with the treatment my dearest Mom received. While I never went to the hospital board and started any legal action against this Doctor, I did go on a site here in Canada where you can post public reviews of physicians. I posted mine and I wasn't the first to have an issue with this thing in a white coat. In fact, in future, that's what I'll call him. Cause that's what he is in my opinion.
Thanks for ruining what, I thought, would be a place for sharing ideas and thoughts about a serious situation into fodder for your amusement. My MIL's medical records already show how serious this issue is, I don't need to participate in a non-discuss with a bunch of childish bullies. Enjoy your life and pray you never need Hospice care when you are elderly. What I've learned over the last 9 or 10 months is that I will never allow my mother to enter any Hospice type care. I will find a way to care for her myself before that happens. (She's a healthy, independent, 86 years young right now.) Neither my husband nor myself will succumb to their ways either. Believe it or not, it does happen.
Thank you, Heather10, for your comments in my defense. I really appreciated that, but I cannot participate in a forum that allows this type of childish behavior. I'm sorry there are so many who share the same experience as we did, and I pray that one day we find justice for our loved ones taken before their time.