This is such a wearisome topic, isn't it? There doesn't appear to be any answers, no solutions across the board that would make everyone happy. I watched this interview a while back with this local Doctor here in Vancouver. He was sharing anecdotes if you will about all the elderly people whose lives were prolonged unnecessarily because they did not have a D N R in place and no discussions had been held with family members about having a MOST directive somewhere visible so that no undue life- saving measures would be taken should an ambulance need to be called. He talked about cracked ribs when C P R was done etc.
He made a lot of sense. I think this discussion would not necessarily be over if people were to be more responsible with these things but maybe, just maybe there would be less half-dead elderly people being propped up in nursing homes. Forgive me if I sound insensitive but let's face it, you walk into most nursing homes and that's what you witness. I'd like to ask the Pro-lifers out there if they ever give a thought to what all these elderly people who they claim are being murdered actually want. In fact, what do they want? I know when I get to "that age" I don't want to spend my last years having someone wiping the drool off my face and other more disgusting stuff wiped off my bottom all because a group of people decided that we should all live till we rot.
Heather, I'm very familiar with the Alzheimer's Society - I subscribe to their newsletter, and I'm a member of their Dementia Friends network (very practical community initiative, everyone should sign up if they've got one in the area).
So it isn't that I dispute their comments. But what frustrates me about them is that they have been regularly coming up with these findings, over decades, and have yet -in my hearing anyway - to propose a single workable solution.
Better quality care, yes, of course. Conscientious, individualised, person-centred assessment, and continual monitoring. Sure.
Provided by whom? Where? Paid for how? At the expense of what other vital physical and mental health services?
Instead we see touching tv advertising campaigns aimed at "raising awareness" - you'll forgive my cynicism, these are actually about raising funds for the vital task of paying the Chief Executive's handsome salary package, if you ask me - which show dear old grandpa being warmly and skilfully included in the grand family lunch. You'll note they don't show the dishevelled, terrified lady screaming "help me! help me!" all night long on the orthopaedic ward, or the exhausted 80 year old wife's bruises from trying to prevent her husband leaving their home.
I AGREE that none of this makes the "chemical cosh" approach acceptable. No, it is not. It is proven to shorten life, I don't dispute that research either. But until we figure out resources, and God knows when it comes to answers I've got nothing, it is inevitable.
Prolife you wrote: [ "If your conscience is bothering you, then it's all you. I wasn't there. I don't know what you guys did." ]
I agree. If no one is around to provide oversight to ensure that the drugs are being used judiciously, correctly and only when other methods fail. ......then that is very dangerous for society and elders in particular.
IT IS A FACT....that over medicating in order to avoid using other more time-consuming methods of control for aggression and other behaviors of an elderly dementia patient...is hastening deaths.
The FACT is, and it has been recognized by competent physicians, that this OVER MEDICATING is happening and it is HASTENING deaths of the elderly.
I can understand why some people would want this issue to go away and why they would want to silence anyone who highlights it.
Taking care of an elderly ill patient is stressful and time-consuming and sometimes thankless. Still these elderly people deserve to have advocates watching out for their best interets.
From the link: [ (12.) Doctors in the United Kingdom also deplore the use of antipsychotic drugs in Alzheimer's - dementia treatments. The British "Sky News" TV Channel - (Thursday January 8, 2009.)
"Drugs Prescribed to Thousands of Alzheimer's Suffers could Double their risk of Dying, Scientists have Warned." The story by correspondent Thomas Moore continued:
"New research shows antipsychotic drugs, which are used to control aggression and behavioural problems are linked to significantly higher death rates
...Researchers at King's College London monitored 128 patients who were prescribed antipsychotic drugs or dummy placebo pills...after three years the difference between the groups was dramatic, with twice as many people dying in those given the antipsychotic medication."
"Too often these dangerous drugs are used as a substitute for good quality dementia care" is a quote from the British Alzheimer's Society, Neil Hunt - Chief Executive.
"The drugs increase the risk of stroke, as well as causing unpleasant side effects such as sedation."
"This distressing new evidence highlights the desperate need to stop people with dementia being over prescribed antipsychotics," he said.
The Alzheimer's Society believes up to 105,000 patients are being inappropriately prescribed antipsychotics. ] ----------------
Prolife:
Your thoughts regarding your sister are accurate.
Sadly as has been noted ad nauseum: It is very difficult to get police to investigate an elderly dementia's patient a death.
I think that closed minds on this topic can be very dangerous to society and the elderly.
According to statistics, the person most likely to financially or emotionally or physically abuse an invalid elder is a family member.
Particularly one who is keeping the family member isolated from other family members and has a controlling dominating attitude.
The acts of isolation and control are red flags for elder abuse.
I am sorry to hear that your controlling sister kept your father so isolated that you could not intervene, in time. This unfortunately is very common.
That isolation is a primary method employed by abusive caregivers. Just like your sister, they often masquerade as a selfless caregiver, when in reality they want total control.
I don't understand why Prolife1 is accusing her sister of essentially killing her father? According to previous post, there is plenty of money, insurance coverage, etc., so if sis did not want to be bothered, she did not have to be. Caregiving could be outsourced - sis did not have to connive at murder. And exactly, what is she supposed to have done? I understand that to be on hospice you have to be medically eligible. Would a broken hip, by itself, be sufficient? I'm Catholic and my understanding that relieving pain and fear is perfectly legitimate, even meritorious. Now, anything can be abused and there are serial killers operating in all kinds of situations, even hospitals. But does that mean that hospitals are evil? Drunks drive cars and kill people. Need we outlaw cars? Please distinguish between a legitimate activity - treating pain, for example, and criminal activity, such as murder. And that is why human society needs regulatory agencies of various kinds. I believe that an aging population does create problems that need to be dealt with - but morally.
Hospice does not give lethal doses of morphine. A nurse would need to give 200mg to make a person pass on. In Hospice the normal doses are 5mg to 15 mg. Morphine is a regulated drug thus inventories are strictly watched.
MOST of us here have experiences with Hospice where our loved ones had diagnosed terminal , life limiting diagnoses. CHF, dementia, advanced cancer. Our loved ones were in pain, agitaypted, struggling to breathe.
There were NOT sitting around waiting to have meaningful last conversations with their adult children.
Hospice has its place. If your sister and her hospice were bad actors, work to get them prosecuted. Just don't try to outlaw hospice for those of us who found it a blessing.
Katie, most people here are fine and okay with drugging people to death. Go read. My father broke his hip..he wasn't dying. My sister killed him off as did the doctor by prescribing lethal doses to end his life through hospice. It's ridiculous. If what you did was fine then it was fine. I wasn't commenting on what you said because this is the first time I've seen anything you've posted. If your conscience is bothering you, then it's all you. I wasn't there. I don't know what you guys did. All I know is that I wasn't allowed to come around to see my dad for the last time because of what my sister was up to and it sure as heck isn't going to happen that way to my mother. She will get to see her three able-bodied kids in a decent amount of time and if she wants enough meds to put her in a state where she can't communicate then fine, but her death won't be at my hand. I will go by the Catholic Church's standards so she can finish up the way she wants to, not be put down like a dog so someone can get back to their comfortable life the way my sister did it. She wasn't sad at all at the funeral. She even tried to keep my brother and me from seeing his dead body so I could say goodbye that way. Never again.
I was not there for your personal situation. However, if you feel you did the right thing for you mother, no need to obsess.
It sounds as if you really, personally did have your mom's best interest at heart.
I am not commenting on your personal situation, I was not there. So I would never second guess you.
I am commenting, in general, on numerous court cases I have reviewed.
Your opinions are interesting and welcome. However, others may disagree, including medical and legal authorities.
With that said, thank goodness there are SOME regulations protecting patients from abusive use of drugs as chemical restraints. Don't you think?
Also, Barb, you stated in your prior post that: [ "We got the dosage put back up to therapeutic levels." ]
So, if you were able to get the dosage raised again, it was obviously not a state LEGAL mandate. It was just a way to double check. A good thing, IMO......Don't you think?
The dosage for your mom, as you stated, was raised again by some professional authorized to override the regulation, once you complained?
Obviously the regulation was only a guide, for doctors or nurses, as a way to place some oversight to protect the elderly from abusive use of "chemical restraints" or over use of drugs without a safety net in place.
Otherwise, whoever gave her the drugs would now be in jail. They are not, right? -----------------------------------------------
Prolife and others who are concerned about careless use of sedating drugs, without oversight, might find the below link and portion from the link interesting:
Here is the link: http://www.junebergalzheimers.com/alzheimers-drugs/dangerous-drugs-for-the-elderly-and-alzheimers
Here are a few comments from medical experts taken from the link:
[ "(1.) The New York Times published an article June 24th 2008 “Doctors Say Medication Is Overused in Dementia” “The use of antipsychotic drugs to tamp down the agitation, combative behavior and outbursts of dementia patients has soared, especially in the elderly.
Sales of newer antipsychotics like Risperdal, Seroquel and Zyprexa totaled $13.1 billion in 2007, up from 4 billion in 2000...about a third of all nursing home patients have been given antipsychotic drugs. The increases continue despite a drumbeat of bad publicity.
A 2006 study of Alzheimer’s patients found that for most patients, antipsychotics provided no significant improvement over placebos in treating aggression and delusions....misuse of the drugs is widespread.
“These antipsychotics can be overused and abused,” said Dr. Jonny Matson, a professor of psychology at Louisiana State University.
“And there’s a lot of abuse going on in a lot of these places....Dr. William D. Smucker, a member of the American Medical Directors Association,...”.prescribe antipsychotics only as a last resort”, he said, “many physicians are absent without leave in the nursing home and don’t take an active role in the assessment of the patient.” ]
And more from the link:
[ "Dr. Graham was quoted: "I would pay careful attention to antipsychotic medications....
The problem with these drugs are that we know that they are being used extensively off label in nursing homes to sedate elderly patients with dementia and other types of disorders.....
But the fact is, is that it increased mortality perhaps by 100 percent. It doubles mortality. " ]
My point, Heather, is that there WERE tapering it, not taking her off it. She was at a therapeutic dose, for her. They started to reduce it because for some godforsaken reason, keeping a 94 year old dementia patient with lifelong depression free of anxiety and dread is considered a chemical restraint in the state of Connecticut. Depression, I guess, is a God given restraint and thus it's okay to afflict a person with that.
Removing Lexapro too quickly definitely has side effects. Lexapro should always be tapered.
Once a person is on it, it should not be removed too quickly.
If the medical staff insists on removing Lexapro too quickly once a patient is on it, that is wrong.
I doubt the state mandate ordered the drug to be removed immediately rather than tapered, as recommended in the literature for the drug. Tapering is standard of care, not cold turkey.
If the medical staff did not taper it, they are uneducated, ill informed and ignorant.
That is why all drugs should be initiated with caution. All drugs have side effects. Some are profound.
There are non-drug methods to address anxiety. Many families opt for those methods.
For those who feel using drugs is the best choice, then that is their choice.
It should be up to the family to decide and if the patient is cognizant it should be up to them to decide.
For those who are insisting that Prolife stop judging others because she is voicing her opinion.
Do you NOT realize that SOME here are judging Prolife????????????????????
Please do not Judge Prolife, until you have walked a mile in his/her shoes.
Also, some here are personally attacking her and by name. Whereas Prolife is speaking in generalities, regarding giving patients and family, options
Not everyone's last days are filled with pain, nor anxiety. It's a judgement call.
I think it is ill-informed to think otherwise.
The bottom line is that once Lexapro, is administered. Removing it without tapering it is not standard of care.
Yes, of course, stopping Lexapro immediately would cause much anxiety. It is a natural side effect of this drug. Please research it.
Lastly, yes, Prolife has repeatedly stated his/her opinion, as have many others who have repeatedly opposed Prolife's opinion.
Dear prolife You are entitled to your opinion, and you have certainly stated it. (Repeatedly)
But, you are obviously ill informed. You need to see your loved one die slowly in agony....maybe you would think that there is a better way to be for your loved one? But, do not think to judge anyone else. Walk a mile in my shoes...or any of the hundreds here who have walked that path.
Real pain relief was the right, humane thing for my Mom. Keep your own Mom in agony as long as you like, stop judging others...you don't know what you are talking about.
Heather, in the last months of my mom's life, my SIL, who was her most frequent visitor, noticed one evening that mom seemed a bit upset. Mom had aphasia in addition to dementia, so when she was upset or agitated, it was a guessing game for us to figure out the problem.
The next evening mom was wringing her hands and weeping silently. What!? Previously calm and happy mom was in turmoil and in psychic pain! She did not deserve to be!
It took us several days to track the culprit. State regularions, in the service of not overmedicating NH patients had rolled out, had mandated a reduction in one of mom's anridepressants. The behavioral health organization mandated halving her Lexapro dosage! Without telling us, and without setting up a means if judging the effect.
We got the dosage put back up to therapeutic levels.
I told the DON and SW that I much preferred to err on the side of overmedicated and calm to undermedicated and agitated.
With a broken brain, NO amount of reassurance from staff or us kept her calm. Only meds kept those demons of depression and dread under wraps.
You wrote: [ "That anyone would try to force her to be in pain or to jerk so terribly because...they said so...is beyond sadistic and selfish."]
Mountain Moose:
I think you have misinterpreted the message of the thread. The message is opposed to forcing a patient or caregiver to do something, they do not want to do.
The comments here if you read the thread, are about over-medicating against the patient's or caregiver's will and giving caring caregivers and cognizant patients freedom to choose.
That is the opposite of forcing someone to do something.
In your case you stated that you gave your mom minimum dosages, after she was already unconscious for three days. You did nothing wrong. You made a choice you felt comfortable with.
Just so you can have some peace of mind, the grimacing and jerking do not necessarily indicate she was in pain. Most likely it did not. It more likely had to do with the brain function deteriorating.
It is however distressing for family members to see a loved one making these movements, particularly when they are unaware of the root cause.
The grimacing and jerking was most likely the deterioration in the part of the brain associated with motor function.
For example: The primary motor cortex, or M1, is one of the principal brain areas involved in motor function. M1 is located in the frontal lobe of the brain, along a bump called the precentral gyrus
The role of the primary motor cortex is to generate neural impulses that control the execution of movement.
The bottom line is two-fold: First, patients and their caregivers and medical staff need to be free to make decisions based on what's best for the patient and his/her comfort. Any outsider who thinks they have a right to force their opinion on others with a hospice-enrolled family member needs to tend their own business.
Second, the populace in general and the patients and families in particular must educate themselves on end-of-life stages and comfort options and quality hospice companies.
Before Mom died last month, she was unconscious for almost three days. She had the appearance of pain on her face and she had terrible jerking, almost like seizures. I gave her the minimum Ativan to calm the jerking and minimum morphine to ease her breathing. She could relax as we girls sat with her until she passed. That anyone would try to force her to be in pain or to jerk so terribly because...they said so...is beyond sadistic and selfish.
Note: I am NOT referring to medical staff or family members who abuse their patients or ill family members. I am only talking about caring family and medical staff who want what's best for the patient.
The fact is: There is about to be a change soon regarding removing curative meds, without permission.
[ "In July, Medicare announced the expansion of a five-year pilot program to 141 hospices in 40 states to allow patients to continue pursuing curative treatments while under hospice care" ]
Please all remember that reading information and being able to interpret information accurately, are two different things.
Also there are differences among facilities.....for example private pay or medicare/medicaid pay.
The private pay facilities are typically better, at what they do. They give patients and their family more options.
Also, there may be different requirements state to state for such facilities or at-home services.
That is why it is a good idea for people to do their own homework regarding a particular hospice facility or home hospice care organization, rather than relying on hearsay.
The worst thing to do is to trust a facility or caregiver based on opinions. Some caregivers are so relieved that their parent is quiet and asleep that they see the hospice facility or aid as angelic.
Being asleep or comatose ( more aptly drugged into oblivion) does not automatically equate to comfort. No one knows exactly what a comatose patient feels. They can not move.
Imagine being in pain and not being able to move or wake up enough to tell anyone.
The NIH or Mayo clinic or Web MD are giving general guidelines. They do not provide guidelines to each individual facility or organization. Nor to private organizations.
A guideline is not a mandate. It is simply a guide based on the organizations personal preference. The NIH has reversed it's position on their own research many times throughout the years.
The last time I checked, the USA is still a free country, and even dying people and their families still have the right to choose the way they die.
BTW: Web MD is simply a reporting platform. It is not a medical authority that effects regulations.
In addition: if you want to see the real facts regarding SOMETIMES abysmal hospice facilities or at home care. ......visit a court house, anywhere in the USA. It's an eye opener.
You will read case after case about over-medicating patients, as a way to make a patient less troublesome, leading to hastened deaths. You will read about thefts, fraud, leaving patients in their own feces and urine, and hitting, and lack of supervision.
Sometimes the abuser is a paid caregiver, sometimes it is an exhausted family member who lacks emotional regulation skills.
The fact is: Not all hospice facilities remove all curative medications. The intention may not be cure but comfort.
The fact is: That removing certain curative meds may cause great discomfort both medically and emotionally to a patient.
Heather, you made an important point regarding facts.
For myself I have my go-to websites such as the National Institute of Health, and also the Mayo Clinic. Even Web-MD is good for quick facts to use when one is going to the big research centers to gather more historical facts.
IMO, they should not be prescribed so freely. People are stealing them from Grannies cabinet. I had one case where the grandson was taking pain meds on Grandma's nightstand and substituting them with look alike pills.
I have had cases where paid caregivers do the same to take themselves or to sell for a profit, in the street market.
I think every normal person is concerned about the opioid epidemic.
However, As for it being normal to remove all meds a hospice patient is taking.
........That is not accurate.
Hospice care does not "stop giving patients all medications", but rather, eliminates many that are no longer appropriate.
For example they will remove those that really are not helping keep the patient comfortable.
Also, if a patient wants to continue taking medications not related to their terminal diagnosis, they can do so.
Do not forget, if you remove a diabetes medication, the patient will die more expediently. Some people are still clear headed and want to hang on to life as long as possible.
For those asking questions here, please do your own research before blindly accepting advice, including my advice.
The facts are the facts. It is important to always get the facts from the appropriate authorities, before blindly accepting information offered.
Someone who's concerned about overmedication should also be concerned about the opioid epidemic, through which people who have nothing to do with needing hospice care are drugging themselves into oblivion, and often death.
Sometimes what happens is Hospice is called in at the last moment to be assigned to a new patient, thus some in the family will feel that Hospice was the cause of the demise, instead of the patient terminal illness being the cause.
I agree 100% that the elderly in nursing homes and at home can be over-medicated due to too many prescription meds, but it a whole different subject debate when it comes to Hospice. We cannot compare the two. In Hospice, it is the opposite, most of the prescription meds are no longer given to the patient. In fact, there are patients that start to feel better and are taken off "graduated" from Hospice to live months or years longer.
One has to realize the amount of morphine that is given in Hospice is the same amount given to a patient who has had major surgery. I remember having a morphine pump after two major surgeries.
And I do understand that one can be allergic to certain pain medications. I cannot tolerate Codeine which is widely prescribed and my allergy is noted on medical files and a Medic-Alert bracelet. I learned I was allergic to it via a pain med which had Codeine. This allergy runs in my Dad's said of the family.
You wrote: [ "People are getting medicated to death. Drug addicts "medicate" to death as well. I would think that people would want to avoid that and have more time for their families, but the law has made it easy to kill people off before they can say their last "goodbyes"]
You have a valid point. Please do not let anyone convince you otherwise.
It is a fact that many elderly patients are over medicated as a way to keep them quiet and compliant.
These elderly can be over medicated by a nurse or hospice personnel or their own family simply for the convenience of the caregivers.
If you go to the courthouse in your county, you will find many lawsuits filed in which medical professionals emphatically state that an elderly person died before their time, simply because they were given pain meds that their systems could not handle.
Whether or not they needed the pain meds is questionable, if you read the court cases.
There are many cases where giving pain meds is indeed compassionate. There are also many cases, where the caregivers have simply become overwhelmed and wish to keep the patient compliant for convenience sake. Very sad.
A comatose patient requires far less time and effort than does an awake and alert patient.
To my mind, caregivers, whether family or professionals have far too much freedom in meting out toxic pain medications.
Remember that sometimes an elderly patient on many medications can easily be overdosed by a very small dose of pain med or combinations of pain meds.
These caregivers later try to convince themselves that they did it in the best interest of the patient.
Perhaps sometimes this is true. But when it is true, then the caregiver is at peace with their decision.
If someone is protesting too much or attacking others for speaking their mind regarding overdosing with pain meds, then the protesters are not at peace with their own decision.
I have empathy for those protesters. Still, I have to wonder why they are not at peace with their decisions, even as they claim their decisions were in the best interest of their elderly charge.
If I were at peace with a decision to give pain meds, I would be totally understanding with someone who may feel otherwise.
My mother is Catholic. She will probably need to visit a Catholic attorney. thanks for reminding me.
Yes, I know about "pain and comfort" issues. People are getting medicated to death. Drug addicts "medicate" to death as well. I would think that people would want to avoid that and have more time for their families, but the law has made it easy to kill people off before they can say their last "goodbyes" when one member of the family wants the person gone and doesn't want to wait for family to get there because, for instance, their mother-in-law was already in the process of dying in another state...which was my case. She died the day before my sister killed my dad off.
Regarding whether or not my sister has been arrested yet...you can go back and read.
By the way, does your Mom have a Medical Directive? If yes, and if there is wording regarding pain comfort, then you have to abide by the legal document that conveys your Mom's wishes.
Comfort is one thing but giving someone the drugs to get their lights to turn off isn't okay. People are apparently doing exactly this every day. Anyway, I will be doing my darnedest to make sure my sister doesn't kill my mom over something like a broken hip like she did to my dad right under my mom's nose. Never again.
The only thing I will ever need help reconciling is how my MILs caregiver chose to let her suffer. How I feel helpless when she loses her breath and struggles to catch it and he sits there and holds her hand instead of administering a little morphine. How he insists on feeding her when hospice has already told us she’s shutting down and food is causing discomfort. How he has made it clear her death will ultimately be on his terms and that he will do nothing other than sit and hold her hand. She’s not gone yet but I am already struggling knowing that she’s going to suffocate to death and struggle to breath until the very end all because one very selfish person thinks he can keep her alive! If it was up to me, I would give her a peaceful passing and there would be nothing to reconcile. It’s the right the thing to do. It’s the humane thing to do.
Heather10: I may have to file a suit against my sister on some land that she is trying to control that belongs to me as well, so there's only so many lawsuits i can do at one time. :) My dad was the sweetest man. I really miss him and my mom got washed out of her home in Harvey, so I'm trying to leave her in her denial about what my sister did while she has had so much loss and going through a lot of health problems herself. I did get her to give me the name of his dr. this weekend when I was with her for Mother's Day. So, I am starting to put together some documentation.
Gershun: I did read the entire thread. Maybe you should as well. Also, it's funny you mention standing on a street corner with a sign. I actually do that, but for the sake of trying to end abortion. There are only so many things that a person can do in this life and still care for themselves and their families, but yeah...my kids are also pro-life activists. And yes, many people on here can tell themselves whatever they want about what they're doing or have done, but in their hearts they know the truth and they're going to need some help reconciling it before they die or they're going to wish there was an afterlife they could have the pain drugged away from as well....but, that's not an option from what I understand.
Once in awhile it's not a bad idea and stop to think what our actions actually lead to.
I am so sorry to hear about your difficulties and concerns.
You wrote: [" And the state probably won't do anything "]
It is difficult to get the police or DA involved in a sick elderly person's death.
If the body was cremated, that would also make a thorough investigation as to the actual cause of death, impossible.
So you are right, the state is unlikely to get involved, unless you have video or some other type of proof that your family member was not being treated properly.
For example the authorities were able to get involved in the recent death of H.R. McMaster Senior mainly because there was video tape of the nurse's blatant neglect.
Also it likely helped that this elderly man was the father of former White House national security adviser, H.R. McMaster, jr.
Without those two factors, the DA would most likely not want to get involved, due to lack of concrete evidence.
You may have a civil suit, though, if you have any proof.
You can likely also file a complaint against the Hospice and ask for an investigation.
Again, I am sorry that you had to go through such a traumatic ordeal.
"This website has opened my eyes to how many people prefer to take their family members lives"
Really Prolife1? Perhaps you need to reread the whole thread. I think most people on here had no choice but to utilize hospice care in order for their loved ones who had reached a point where comfort measures were the only way they could know for sure their loved ones, whose death was imminent would not die wracked with pain and mental anguish.
Go stand on a street corner with a sign or better still go to your local government offices and campaign for the changes you want to happen.
Pistol, I've reported the rather rude message you posted on my message board. I'm not sure how I've offended you.
"Probably" gave him morphine?
After you sign up with Hospice, you no longer go to the hospital. Signing up with Hospice is an acknowledgment that what you have can't be cured. Not that you want to die, just that you want comfort rather than curative treatment.
To make public the response I gave to your message board post, signs of imminent death are not religious in nature; rather, they are physical. Breathing is different, skin becomes mottled and cool. There are others that I don't remember from my mom's recent death. And yes, I was there. They gave her morphine to ease her breathing and pain, not to kill her.
I'm sorry for your loss. Your brother in law was a brave and realistic person if he signed himself up for hospice.
He made a lot of sense. I think this discussion would not necessarily be over if people were to be more responsible with these things but maybe, just maybe there would be less half-dead elderly people being propped up in nursing homes. Forgive me if I sound insensitive but let's face it, you walk into most nursing homes and that's what you witness. I'd like to ask the Pro-lifers out there if they ever give a thought to what all these elderly people who they claim are being murdered actually want. In fact, what do they want? I know when I get to "that age" I don't want to spend my last years having someone wiping the drool off my face and other more disgusting stuff wiped off my bottom all because a group of people decided that we should all live till we rot.
So it isn't that I dispute their comments. But what frustrates me about them is that they have been regularly coming up with these findings, over decades, and have yet -in my hearing anyway - to propose a single workable solution.
Better quality care, yes, of course. Conscientious, individualised, person-centred assessment, and continual monitoring. Sure.
Provided by whom? Where? Paid for how? At the expense of what other vital physical and mental health services?
Instead we see touching tv advertising campaigns aimed at "raising awareness" - you'll forgive my cynicism, these are actually about raising funds for the vital task of paying the Chief Executive's handsome salary package, if you ask me - which show dear old grandpa being warmly and skilfully included in the grand family lunch. You'll note they don't show the dishevelled, terrified lady screaming "help me! help me!" all night long on the orthopaedic ward, or the exhausted 80 year old wife's bruises from trying to prevent her husband leaving their home.
I AGREE that none of this makes the "chemical cosh" approach acceptable. No, it is not. It is proven to shorten life, I don't dispute that research either. But until we figure out resources, and God knows when it comes to answers I've got nothing, it is inevitable.
I agree. If no one is around to provide oversight to ensure that the drugs are being used judiciously, correctly and only when other methods fail. ......then that is very dangerous for society and elders in particular.
IT IS A FACT....that over medicating in order to avoid using other more time-consuming methods of control for aggression and other behaviors of an elderly dementia patient...is hastening deaths.
The FACT is, and it has been recognized by competent physicians, that this OVER MEDICATING is happening and it is HASTENING deaths of the elderly.
I can understand why some people would want this issue to go away and why they would want to silence anyone who highlights it.
Taking care of an elderly ill patient is stressful and time-consuming and sometimes thankless. Still these elderly people deserve to have advocates watching out for their best interets.
Here is a link discussing it:
www.junebergalzheimers.com/alzheimers-drugs/dangerous-drugs-for-the-elderly-and-alzheimers
From the link: [ (12.) Doctors in the United Kingdom also deplore the use of antipsychotic drugs in Alzheimer's - dementia treatments. The British "Sky News" TV Channel - (Thursday January 8, 2009.)
"Drugs Prescribed to Thousands of Alzheimer's Suffers could Double their risk of Dying, Scientists have Warned." The story by correspondent Thomas Moore continued:
"New research shows antipsychotic drugs, which are used to control aggression and behavioural problems are linked to significantly higher death rates
...Researchers at King's College London monitored 128 patients who were prescribed antipsychotic drugs or dummy placebo pills...after three years the difference between the groups was dramatic, with twice as many people dying in those given the antipsychotic medication."
"Too often these dangerous drugs are used as a substitute for good quality dementia care" is a quote from the British Alzheimer's Society, Neil Hunt - Chief Executive.
"The drugs increase the risk of stroke, as well as causing unpleasant side effects such as sedation."
"This distressing new evidence highlights the desperate need to stop people with dementia being over prescribed antipsychotics," he said.
The Alzheimer's Society believes up to 105,000 patients are being inappropriately prescribed antipsychotics. ]
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Prolife:
Your thoughts regarding your sister are accurate.
Sadly as has been noted ad nauseum: It is very difficult to get police to investigate an elderly dementia's patient a death.
I think that closed minds on this topic can be very dangerous to society and the elderly.
According to statistics, the person most likely to financially or emotionally or physically abuse an invalid elder is a family member.
Particularly one who is keeping the family member isolated from other family members and has a controlling dominating attitude.
The acts of isolation and control are red flags for elder abuse.
I am sorry to hear that your controlling sister kept your father so isolated that you could not intervene, in time. This unfortunately is very common.
That isolation is a primary method employed by abusive caregivers. Just like your sister, they often masquerade as a selfless caregiver, when in reality they want total control.
I believe that an aging population does create problems that need to be dealt with - but morally.
MOST of us here have experiences with Hospice where our loved ones had diagnosed terminal , life limiting diagnoses. CHF, dementia, advanced cancer. Our loved ones were in pain, agitaypted, struggling to breathe.
There were NOT sitting around waiting to have meaningful last conversations with their adult children.
Hospice has its place. If your sister and her hospice were bad actors, work to get them prosecuted. Just don't try to outlaw hospice for those of us who found it a blessing.
I was not there for your personal situation. However, if you feel you did the right thing for you mother, no need to obsess.
It sounds as if you really, personally did have your mom's best interest at heart.
I am not commenting on your personal situation, I was not there. So I would never second guess you.
I am commenting, in general, on numerous court cases I have reviewed.
Your opinions are interesting and welcome. However, others may disagree, including medical and legal authorities.
With that said, thank goodness there are SOME regulations protecting patients from abusive use of drugs as chemical restraints. Don't you think?
Also, Barb, you stated in your prior post that: [ "We got the dosage put back up to therapeutic levels." ]
So, if you were able to get the dosage raised again, it was obviously not a state LEGAL mandate. It was just a way to double check. A good thing, IMO......Don't you think?
The dosage for your mom, as you stated, was raised again by some professional authorized to override the regulation, once you complained?
Obviously the regulation was only a guide, for doctors or nurses, as a way to place some oversight to protect the elderly from abusive use of "chemical restraints" or over use of drugs without a safety net in place.
Otherwise, whoever gave her the drugs would now be in jail. They are not, right?
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Prolife and others who are concerned about careless use of sedating drugs, without oversight, might find the below link and portion from the link interesting:
Here is the link: http://www.junebergalzheimers.com/alzheimers-drugs/dangerous-drugs-for-the-elderly-and-alzheimers
Here are a few comments from medical experts taken from the link:
[ "(1.) The New York Times published an article June 24th 2008 “Doctors Say Medication Is Overused in Dementia” “The use of antipsychotic drugs to tamp down the agitation, combative behavior and outbursts of dementia patients has soared, especially in the elderly.
Sales of newer antipsychotics like Risperdal, Seroquel and Zyprexa totaled $13.1 billion in 2007, up from 4 billion in 2000...about a third of all nursing home patients have been given antipsychotic drugs. The increases continue despite a drumbeat of bad publicity.
A 2006 study of Alzheimer’s patients found that for most patients, antipsychotics provided no significant improvement over placebos in treating aggression and delusions....misuse of the drugs is widespread.
“These antipsychotics can be overused and abused,” said Dr. Jonny Matson, a professor of psychology at Louisiana State University.
“And there’s a lot of abuse going on in a lot of these places....Dr. William D. Smucker, a member of the American Medical Directors Association,...”.prescribe antipsychotics only as a last resort”, he said, “many physicians are absent without leave in the nursing home and don’t take an active role in the assessment of the patient.” ]
And more from the link:
[ "Dr. Graham was quoted: "I would pay careful attention to antipsychotic medications....
The problem with these drugs are that we know that they are being used extensively off label in nursing homes to sedate elderly patients with dementia and other types of disorders.....
But the fact is, is that it increased mortality perhaps by 100 percent. It doubles
mortality. " ]
Once a person is on it, it should not be removed too quickly.
If the medical staff insists on removing Lexapro too quickly once a patient is on it, that is wrong.
I doubt the state mandate ordered the drug to be removed immediately rather than tapered, as recommended in the literature for the drug. Tapering is standard of care, not cold turkey.
If the medical staff did not taper it, they are uneducated, ill informed and ignorant.
That is why all drugs should be initiated with caution. All drugs have side effects. Some are profound.
There are non-drug methods to address anxiety. Many families opt for those methods.
For those who feel using drugs is the best choice, then that is their choice.
It should be up to the family to decide and if the patient is cognizant it should be up to them to decide.
For those who are insisting that Prolife stop judging others because she is voicing her opinion.
Do you NOT realize that SOME here are judging Prolife????????????????????
Please do not Judge Prolife, until you have walked a mile in his/her shoes.
Also, some here are personally attacking her and by name. Whereas Prolife is speaking in generalities, regarding giving patients and family, options
Not everyone's last days are filled with pain, nor anxiety. It's a judgement call.
I think it is ill-informed to think otherwise.
The bottom line is that once Lexapro, is administered. Removing it without tapering it is not standard of care.
Yes, of course, stopping Lexapro immediately would cause much anxiety. It is a natural side effect of this drug. Please research it.
Lastly, yes, Prolife has repeatedly stated his/her opinion, as have many others who have repeatedly opposed Prolife's opinion.
You are entitled to your opinion, and you have certainly stated it. (Repeatedly)
But, you are obviously ill informed. You need to see your loved one die slowly in agony....maybe you would think that there is a better way to be for your loved one? But, do not think to judge anyone else. Walk a mile in my shoes...or any of the hundreds here who have walked that path.
Real pain relief was the right, humane thing for my Mom. Keep your own Mom in agony as long as you like, stop judging others...you don't know what you are talking about.
The next evening mom was wringing her hands and weeping silently. What!? Previously calm and happy mom was in turmoil and in psychic pain! She did not deserve to be!
It took us several days to track the culprit. State regularions, in the service of not overmedicating NH patients had rolled out, had mandated a reduction in one of mom's anridepressants. The behavioral health organization mandated halving her Lexapro dosage! Without telling us, and without setting up a means if judging the effect.
We got the dosage put back up to therapeutic levels.
I told the DON and SW that I much preferred to err on the side of overmedicated and calm to undermedicated and agitated.
With a broken brain, NO amount of reassurance from staff or us kept her calm. Only meds kept those demons of depression and dread under wraps.
You wrote: [ "That anyone would try to force her to be in pain or to jerk so terribly because...they said so...is beyond sadistic and selfish."]
Mountain Moose:
I think you have misinterpreted the message of the thread. The message is opposed to forcing a patient or caregiver to do something, they do not want to do.
The comments here if you read the thread, are about over-medicating against the patient's or caregiver's will and giving caring caregivers and cognizant patients freedom to choose.
That is the opposite of forcing someone to do something.
In your case you stated that you gave your mom minimum dosages, after she was already unconscious for three days. You did nothing wrong. You made a choice you felt comfortable with.
Just so you can have some peace of mind, the grimacing and jerking do not necessarily indicate she was in pain. Most likely it did not. It more likely had to do with the brain function deteriorating.
It is however distressing for family members to see a loved one making these movements, particularly when they are unaware of the root cause.
The grimacing and jerking was most likely the deterioration in the part of the brain associated with motor function.
For example: The primary motor cortex, or M1, is one of the principal brain areas involved in motor function. M1 is located in the frontal lobe of the brain, along a bump called the precentral gyrus
The role of the primary motor cortex is to generate neural impulses that control the execution of movement.
Second, the populace in general and the patients and families in particular must educate themselves on end-of-life stages and comfort options and quality hospice companies.
Before Mom died last month, she was unconscious for almost three days. She had the appearance of pain on her face and she had terrible jerking, almost like seizures. I gave her the minimum Ativan to calm the jerking and minimum morphine to ease her breathing. She could relax as we girls sat with her until she passed. That anyone would try to force her to be in pain or to jerk so terribly because...they said so...is beyond sadistic and selfish.
Note: I am NOT referring to medical staff or family members who abuse their patients or ill family members. I am only talking about caring family and medical staff who want what's best for the patient.
[ "In July, Medicare announced the expansion of a five-year pilot program to 141 hospices in 40 states to allow patients to continue pursuing curative treatments while under hospice care" ]
Please all remember that reading information and being able to interpret information accurately, are two different things.
Also there are differences among facilities.....for example private pay or medicare/medicaid pay.
The private pay facilities are typically better, at what they do. They give patients and their family more options.
Also, there may be different requirements state to state for such facilities or at-home services.
That is why it is a good idea for people to do their own homework regarding a particular hospice facility or home hospice care organization, rather than relying on hearsay.
The worst thing to do is to trust a facility or caregiver based on opinions. Some caregivers are so relieved that their parent is quiet and asleep that they see the hospice facility or aid as angelic.
Being asleep or comatose ( more aptly drugged into oblivion) does not automatically equate to comfort. No one knows exactly what a comatose patient feels. They can not move.
Imagine being in pain and not being able to move or wake up enough to tell anyone.
The NIH or Mayo clinic or Web MD are giving general guidelines. They do not provide guidelines to each individual facility or organization. Nor to private organizations.
A guideline is not a mandate. It is simply a guide based on the organizations personal preference. The NIH has reversed it's position on their own research many times throughout the years.
The last time I checked, the USA is still a free country, and even dying people and their families still have the right to choose the way they die.
BTW: Web MD is simply a reporting platform. It is not a medical authority that effects regulations.
In addition: if you want to see the real facts regarding SOMETIMES abysmal hospice facilities or at home care. ......visit a court house, anywhere in the USA. It's an eye opener.
You will read case after case about over-medicating patients, as a way to make a patient less troublesome, leading to hastened deaths. You will read about thefts, fraud, leaving patients in their own feces and urine, and hitting, and lack of supervision.
Sometimes the abuser is a paid caregiver, sometimes it is an exhausted family member who lacks emotional regulation skills.
The fact is: Not all hospice facilities remove all curative medications. The intention may not be cure but comfort.
The fact is: That removing certain curative meds may cause great discomfort both medically and emotionally to a patient.
For myself I have my go-to websites such as the National Institute of Health, and also the Mayo Clinic. Even Web-MD is good for quick facts to use when one is going to the big research centers to gather more historical facts.
IMO, they should not be prescribed so freely. People are stealing them from Grannies cabinet. I had one case where the grandson was taking pain meds on Grandma's nightstand and substituting them with look alike pills.
I have had cases where paid caregivers do the same to take themselves or to sell for a profit, in the street market.
I think every normal person is concerned about the opioid epidemic.
However, As for it being normal to remove all meds a hospice patient is taking.
........That is not accurate.
Hospice care does not "stop giving patients all medications", but rather, eliminates many that are no longer appropriate.
For example they will remove those that really are not helping keep the patient comfortable.
Also, if a patient wants to continue taking medications not related to their terminal diagnosis, they can do so.
Do not forget, if you remove a diabetes medication, the patient will die more expediently. Some people are still clear headed and want to hang on to life as long as possible.
For those asking questions here, please do your own research before blindly accepting advice, including my advice.
The facts are the facts. It is important to always get the facts from the appropriate authorities, before blindly accepting information offered.
I agree 100% that the elderly in nursing homes and at home can be over-medicated due to too many prescription meds, but it a whole different subject debate when it comes to Hospice. We cannot compare the two. In Hospice, it is the opposite, most of the prescription meds are no longer given to the patient. In fact, there are patients that start to feel better and are taken off "graduated" from Hospice to live months or years longer.
One has to realize the amount of morphine that is given in Hospice is the same amount given to a patient who has had major surgery. I remember having a morphine pump after two major surgeries.
And I do understand that one can be allergic to certain pain medications. I cannot tolerate Codeine which is widely prescribed and my allergy is noted on medical files and a Medic-Alert bracelet. I learned I was allergic to it via a pain med which had Codeine. This allergy runs in my Dad's said of the family.
You wrote: [ "People are getting medicated to death. Drug addicts "medicate" to death as well. I would think that people would want to avoid that and have more time for their families, but the law has made it easy to kill people off before they can say their last "goodbyes"]
You have a valid point. Please do not let anyone convince you otherwise.
It is a fact that many elderly patients are over medicated as a way to keep them quiet and compliant.
These elderly can be over medicated by a nurse or hospice personnel or their own family simply for the convenience of the caregivers.
If you go to the courthouse in your county, you will find many lawsuits filed in which medical professionals emphatically state that an elderly person died before their time, simply because they were given pain meds that their systems could not handle.
Whether or not they needed the pain meds is questionable, if you read the court cases.
There are many cases where giving pain meds is indeed compassionate. There are also many cases, where the caregivers have simply become overwhelmed and wish to keep the patient compliant for convenience sake. Very sad.
A comatose patient requires far less time and effort than does an awake and alert patient.
To my mind, caregivers, whether family or professionals have far too much freedom in meting out toxic pain medications.
Remember that sometimes an elderly patient on many medications can easily be overdosed by a very small dose of pain med or combinations of pain meds.
These caregivers later try to convince themselves that they did it in the best interest of the patient.
Perhaps sometimes this is true. But when it is true, then the caregiver is at peace with their decision.
If someone is protesting too much or attacking others for speaking their mind regarding overdosing with pain meds, then the protesters are not at peace with their own decision.
I have empathy for those protesters. Still, I have to wonder why they are not at peace with their decisions, even as they claim their decisions were in the best interest of their elderly charge.
If I were at peace with a decision to give pain meds, I would be totally understanding with someone who may feel otherwise.
Yes, I know about "pain and comfort" issues. People are getting medicated to death. Drug addicts "medicate" to death as well. I would think that people would want to avoid that and have more time for their families, but the law has made it easy to kill people off before they can say their last "goodbyes" when one member of the family wants the person gone and doesn't want to wait for family to get there because, for instance, their mother-in-law was already in the process of dying in another state...which was my case. She died the day before my sister killed my dad off.
Regarding whether or not my sister has been arrested yet...you can go back and read.
By the way, does your Mom have a Medical Directive? If yes, and if there is wording regarding pain comfort, then you have to abide by the legal document that conveys your Mom's wishes.
Gershun: I did read the entire thread. Maybe you should as well. Also, it's funny you mention standing on a street corner with a sign. I actually do that, but for the sake of trying to end abortion. There are only so many things that a person can do in this life and still care for themselves and their families, but yeah...my kids are also pro-life activists. And yes, many people on here can tell themselves whatever they want about what they're doing or have done, but in their hearts they know the truth and they're going to need some help reconciling it before they die or they're going to wish there was an afterlife they could have the pain drugged away from as well....but, that's not an option from what I understand.
Once in awhile it's not a bad idea and stop to think what our actions actually lead to.
I am so sorry to hear about your difficulties and concerns.
You wrote: [" And the state probably won't do anything "]
It is difficult to get the police or DA involved in a sick elderly person's death.
If the body was cremated, that would also make a thorough investigation as to the actual cause of death, impossible.
So you are right, the state is unlikely to get involved, unless you have video or some other type of proof that your family member was not being treated properly.
For example the authorities were able to get involved in the recent death of H.R. McMaster Senior mainly because there was video tape of the nurse's blatant neglect.
Also it likely helped that this elderly man was the father of former White House national security adviser, H.R. McMaster, jr.
Without those two factors, the DA would most likely not want to get involved, due to lack of concrete evidence.
You may have a civil suit, though, if you have any proof.
You can likely also file a complaint against the Hospice and ask for an investigation.
Again, I am sorry that you had to go through such a traumatic ordeal.
Sending big hugs, your way.
Really Prolife1? Perhaps you need to reread the whole thread. I think most people on here had no choice but to utilize hospice care in order for their loved ones who had reached a point where comfort measures were the only way they could know for sure their loved ones, whose death was imminent would not die wracked with pain and mental anguish.
Go stand on a street corner with a sign or better still go to your local government offices and campaign for the changes you want to happen.
"Probably" gave him morphine?
After you sign up with Hospice, you no longer go to the hospital. Signing up with Hospice is an acknowledgment that what you have can't be cured. Not that you want to die, just that you want comfort rather than curative treatment.
To make public the response I gave to your message board post, signs of imminent death are not religious in nature; rather, they are physical. Breathing is different, skin becomes mottled and cool. There are others that I don't remember from my mom's recent death. And yes, I was there. They gave her morphine to ease her breathing and pain, not to kill her.
I'm sorry for your loss. Your brother in law was a brave and realistic person if he signed himself up for hospice.