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.
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.
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.
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.
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.
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.
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.
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. " ]
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.
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.
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.
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.
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.
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.
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.
My sister wasn't the caregiver...she didn't want to come from out of state to deal with my mom caring for my dad, etc. She has put my mom in assisted living now against her will. She is in a good facility and is fine with it now, but my mother admits she bullied her into it. My sister has always been mean and lazy. I've known her a long time...and CONTROLLING. She is pro-abortion and pro-euthanasia and won't apologize for it in any way. It's a no-brainer. I have to protect my mom. But, she is in LaLa Land about what happened to my dad. I don't want to upset her since she has so many pain issues...but, there's my sister's route for "offing" her right there in a nutshell. It's ridiculous.
Profile1, please note that it sounds like you are confusing active euthanasia with Hospice. The two are not the same. Hospice is not suicide.
As for your Mom being in Independent Living [as per your profile] but I assume now has moved to Assisted Living for a higher level of skilled care, may I ask why you didn't volunteer to be Mom's full-time caregiver?
I think sometimes the complainers do so b/c they weren't there when the caregiving needed to be done; now they have guilty syndromes and try to blame it on Hospice.
freqflyer, my mom is just in assisted...again against my mother's will. She bullied her into it....my mom said she was being pushy and mean. These were red flags. and i have offered over and over again to have her come here. she doesnt want to leave her friends of 60 years in my hometown.
Garden Artist that was a passive aggressive reference to me. And my husbands mother died the day before my dad died so we werent available even though i was checking up and begging to come see Dad in the hospital before we found out his mom was dying.
Gershun, maybe you dont want to have people cleaning you up but I want to see every one of my many kids before i die. its an individual decision that belongs to the individual. Choose your battles. YOUR battles, not others'.
I love how you guys' "compassion" is all about taking people early rather than for those who went too soon and their kids. who didnt get to say goodbye. I am noticing a pattern. Not one of you certain few (and you know who you are) are a bit sorry for what actually happened exactly as Im stating. If someone came on here and said they hastened someones death youd trust them and feel sorry for them. Very telling.
I take care of my 93 year old mother who has Dementia and COPD as well as other manageable illnesses. She does not appear to be nearing death as she is able to navigate through my apartment on her own and does not need help with toileting, When the NP recommended hospice care for her, I felt she was pushing me and my mother to accept the inevitable and keep my mother comfortable with tranquilizers, etc. I am curious to know if other caregivers whose parent/s were still aware of themselves and surroundings. I was told that hospice did not mean my mother was near death but just there to inject medicines and offer support. I definitely plan to call them in when the time comes, but, I feel it's too soon. Has anyone been in this situation and called hospice in early and then see a sudden drop of will to live in their parent? I am trying to decide what to do. Any one who has been through this, I would greatly love to hear the outcome of calling hospice in early. Thank you and God Bless.
Baloney Prolife, once again I have to interject cause you really don't have a clue. You have such tunnel vision with your view on this particular subject that you can't see the forest for the trees. Let's just agree to disagree.
JoGreen, my Mom was in palliative care, not hospice but she was unconscious her whole last week of life. We were told she was passing and the morphine that was administered to her was to relieve her erratic breathing. It was not enough to kill her. She passed after seven days of having small amounts of morphine given to her. She would have passed anyway. This way she passed comfortably.
JoGreen, if you don't feel it's time, and you don't get any sign from your mother that she is beginning to feel it's her time, and you don't yet have any need for the additional, comprehensive support that hospice can offer (adaptations, equipment, respite breaks, for example) then you stick to your guns. Thank the nurse for the information and tell her you will keep it clearly in mind.
And DO keep it in mind. Don't struggle on alone past the point where you're managing confidently.
Also...
I get an impression from your post that you are anxious that as soon as your mother hears the word hospice it will be as though the Grim Reaper had turned up on the doorstep and rung the bell, and your mother would abandon all hope. It really wouldn't be like that - these are health care practitioners like any others, there to support your mother and you. What about calling the provider the NP suggested and having a preliminary chat, just for information and to familiarise yourself with what they're like?
My MIL has been on Hospice since January 2017 and is still in her senior living apartment and still "okay", as far as "okay" is any more. She is on hopsice for a gastric bleed complicated by her COPD and heart ailments. She has moderate dementia as well, but the hospice is for the GI bleed.
We moved to at-home hospice because my MIL did not wish to undergo any further diagnostic testing or treatment. The GI bleed had not been located, and after 12 incidents of anesthesia and still no success, she was done. All that sedation likely sped up the dementia.
At this time, we simply have the nurse coming by each week to check on her. Social worker comes out each month. MD comes out every two months for recertification. We've had to call them 3 times for events outside our norm (nosebleeds that wouldn't stop, and a sudden loss of vision in one eye that was deemed a clot), and someone either called or visited in a very reasonable amount of time to either provide advice or assist.
Hospice has not pushed any medications on her - she's on her normal regimen of meds for her heart conditions and COPD. They added Ativan that is "as needed" when her breathing tightens up to the point where it causes distress. She's only taken 13 Ativan in her 18 months on Hospice. They've never pushed it or any other medications.
I have no issue recommending early placement on Hospice. They provide equipment needed (and as needed - you don't have to take everything offered at once!). They send the nurses and MD to you, rather than having to go out. They provide support to the patient AND the caregiver. I feel hospice and their services have extended her life by allowing her to remain in her current location and allow me to fly in less often because there is professional support who keeps me informed as to changes and needs. She remains on hospice because the life expectancy is 6 months, even though she's been on hospice much longer than that. Another family member lived for 3 years on at-home hospice services. It's simply not a death sentence. People often don't call hospice in until the very end, and people sometimes don't understand the services they can provide that can help the patient and the caregiver improve end-of-life care, no matter how long that may be.
Don't hesitate to at least talk to a hospice service - you likely have many choices and can take your time to find the service that fits best with your situation and beliefs. You may find that it is a great support and benefit to both you and your mother.
If you have other questions, please don't hesitate to ask. Just know that there are many of us who went on hospice early and it's not a death sentence, but a great help.
Prolife; If you mom doesn't want to be in Assisted Living, what is keeping her there?
Can't she leave? It's not jail, after all. She can sign herself out and go live somewhere else with whatever level of support she needs. She can rescind the POA she gave to her bullying daughter if she wants to and reassign it to you.
Or does mother simply like to stir the pot and make everyone unhappy? Does she tell "bully" sister that YOU'RE bullying her?
I guess different folks here had different experiences of Hospice. My mom, who had been in a NH for 4 1/2 years with dementia, CHF and various other ailments, fell, developed pneumonia and was sleeping around the clock before we started Hospice. There was no "saying goodbye", no meaningful conversations. Heck, there hadn't been a "meaningful conversation" since mom had the stroke in 2013.
We didn't hasten mom's death. She was writhing and grimacing. It seemed cruel to let that happen. Morphine allowed a calm last couple of days. No communication, but lots of music and prayers.
I would guess that "bullying" daughter hears a good deal about how wonderful ProLife is. But should BD ever snap "well go and live with her, then!" it'll be turned into a plot to drive mother from her home; and ProLife will still be inviting her; and she'll still stay firmly put.
ProLife, there are certain blunt realities around death that you just seem to wish away. You don't get to choose when or how you die. You may or may not get the option of taking leave; you may or may not be in a fit state to do it. Losing people you love is always bloody awful. I wonder if focusing on someone or something to blame is one way of channelling the pain and anger of loss.
Jo green, my MIL has been on hospice for just about 3 months now. I can honestly say they have not rushed anything, she is not tranquilized at all. She chose to go on hospice when her doctor broke the news that she probably only had 3-4 months to live. She's at home, with her family. Hospice does provide a "comfort pack" of meds which includes morphine and ativan but its not pushed on the patient, its there for if and when you need it. My MIL has pulmonary fibrosis and is completely bedridden. She hasn't needed the morphine but she does need the ativan--she has anxiety during the night and is now suffering bouts of shortness of breath that come at random. She takes the ativan only when she wants it. A home health aid comes 3 times a week to clean her and a nurse comes twice a week. They do make recommendations that you may not agree with but they don't force it upon you. They are suggesting we take MIL off food because she can no longer digest it and it causes discomfort. That has been hard for her caretaker to accept because he shares the same views as Prolife unfortunately and he thinks she will die if she doesn't eat. When she loses her breath, he would rather her take nothing and lay there suffering. he thinks the hospice meds speed up the process, sorry to say he is very misinformed about that. I to have no problem recommending it. I think our family would be pretty lost right now if MIL hadn't gone on hospice.
Prolife, I think its very telling that your idea of "compassion" is to prolong a miserable suffering life for your own selfish needs. Its quite ironic you don't want your sibling to control your mothers death yet thats exact what YOU plan to do. You want it to happen on your terms.
[ "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.
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.
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 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 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.
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.
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. " ]
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 believe that an aging population does create problems that need to be dealt with - but morally.
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.
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.
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.
As for your Mom being in Independent Living [as per your profile] but I assume now has moved to Assisted Living for a higher level of skilled care, may I ask why you didn't volunteer to be Mom's full-time caregiver?
Garden Artist that was a passive aggressive reference to me. And my husbands mother died the day before my dad died so we werent available even though i was checking up and begging to come see Dad in the hospital before we found out his mom was dying.
JoGreen, my Mom was in palliative care, not hospice but she was unconscious her whole last week of life. We were told she was passing and the morphine that was administered to her was to relieve her erratic breathing. It was not enough to kill her. She passed after seven days of having small amounts of morphine given to her. She would have passed anyway. This way she passed comfortably.
And DO keep it in mind. Don't struggle on alone past the point where you're managing confidently.
Also...
I get an impression from your post that you are anxious that as soon as your mother hears the word hospice it will be as though the Grim Reaper had turned up on the doorstep and rung the bell, and your mother would abandon all hope. It really wouldn't be like that - these are health care practitioners like any others, there to support your mother and you. What about calling the provider the NP suggested and having a preliminary chat, just for information and to familiarise yourself with what they're like?
My MIL has been on Hospice since January 2017 and is still in her senior living apartment and still "okay", as far as "okay" is any more. She is on hopsice for a gastric bleed complicated by her COPD and heart ailments. She has moderate dementia as well, but the hospice is for the GI bleed.
We moved to at-home hospice because my MIL did not wish to undergo any further diagnostic testing or treatment. The GI bleed had not been located, and after 12 incidents of anesthesia and still no success, she was done. All that sedation likely sped up the dementia.
At this time, we simply have the nurse coming by each week to check on her. Social worker comes out each month. MD comes out every two months for recertification. We've had to call them 3 times for events outside our norm (nosebleeds that wouldn't stop, and a sudden loss of vision in one eye that was deemed a clot), and someone either called or visited in a very reasonable amount of time to either provide advice or assist.
Hospice has not pushed any medications on her - she's on her normal regimen of meds for her heart conditions and COPD. They added Ativan that is "as needed" when her breathing tightens up to the point where it causes distress. She's only taken 13 Ativan in her 18 months on Hospice. They've never pushed it or any other medications.
I have no issue recommending early placement on Hospice. They provide equipment needed (and as needed - you don't have to take everything offered at once!). They send the nurses and MD to you, rather than having to go out. They provide support to the patient AND the caregiver. I feel hospice and their services have extended her life by allowing her to remain in her current location and allow me to fly in less often because there is professional support who keeps me informed as to changes and needs. She remains on hospice because the life expectancy is 6 months, even though she's been on hospice much longer than that. Another family member lived for 3 years on at-home hospice services. It's simply not a death sentence. People often don't call hospice in until the very end, and people sometimes don't understand the services they can provide that can help the patient and the caregiver improve end-of-life care, no matter how long that may be.
Don't hesitate to at least talk to a hospice service - you likely have many choices and can take your time to find the service that fits best with your situation and beliefs. You may find that it is a great support and benefit to both you and your mother.
If you have other questions, please don't hesitate to ask. Just know that there are many of us who went on hospice early and it's not a death sentence, but a great help.
Can't she leave? It's not jail, after all. She can sign herself out and go live somewhere else with whatever level of support she needs. She can rescind the POA she gave to her bullying daughter if she wants to and reassign it to you.
Or does mother simply like to stir the pot and make everyone unhappy? Does she tell "bully" sister that YOU'RE bullying her?
I guess different folks here had different experiences of Hospice. My mom, who had been in a NH for 4 1/2 years with dementia, CHF and various other ailments, fell, developed pneumonia and was sleeping around the clock before we started Hospice. There was no "saying goodbye", no meaningful conversations. Heck, there hadn't been a "meaningful conversation" since mom had the stroke in 2013.
We didn't hasten mom's death. She was writhing and grimacing. It seemed cruel to let that happen. Morphine allowed a calm last couple of days. No communication, but lots of music and prayers.
ProLife, there are certain blunt realities around death that you just seem to wish away. You don't get to choose when or how you die. You may or may not get the option of taking leave; you may or may not be in a fit state to do it. Losing people you love is always bloody awful. I wonder if focusing on someone or something to blame is one way of channelling the pain and anger of loss.
Prolife, I think its very telling that your idea of "compassion" is to prolong a miserable suffering life for your own selfish needs. Its quite ironic you don't want your sibling to control your mothers death yet thats exact what YOU plan to do. You want it to happen on your terms.