I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?
Hospice was a godsend for us with daddy's passing.
My Mom did not have cancer and was NOT dying. Her doctor suggested she go under hospice since she had been diagnosed with congestive heart failure which people live up to 10 years being treated with medication. She had a bad hip with no cartilage and did have pain which was being managed with hydrocodone. My Dad had been the hospice chaplain at that facility for 15 years earlier so we thought she was safe when we enroller her into hospice in the fall of 2017. After her doctor left to go out of country for 3 weeks, hospice staff showed up at my parent’s home and stated they were taking them to the hospice facility for my dad, the caregiver to receive respite and they would "take care of her". Hospice showed up at the home and said an ambulance is on the way and told my parents they were taking them to the hospice facility – they did not ask. My Mom always said she wanted to die at home. My Mom always said a pain level of 8 out of 10 was acceptable to her and it was HER choice. They were to keep them 3 to 4 days while my sister and I, who live in different states could come and make other arrangements for care. They admitted them both and the next day they started giving my Mom morphine and ativan without their approval. Mom became sad and stated she was afraid of morphine and didn't want to take it. They told her they switched to morphine because her pain med was making her constipated. Later once we knew this and received medical records we found out ALL opiods cause constipation! The following day eventhough she stated she was NOT in pain they gave her 100 mcg Fentanyl plus Morphine and Ativan and changed her from respite care to end of life. Within 2 hours she started showing overdose symptoms of fentanyl. Long story – short My sister and I arrived and she was in a coma state. We had them stop morphine and Ativan believing this to be what had rendered that state but eventhough we were able to get a few drops of water in her by coaxing her and rubbing her throat she did not become coherent. Eleven days after being “taken” there she stopped breathing.
I received the medical records and the amount and timing of the drugs with the comments entered, it is totally clear that they murdered her. In December of 2017 after doing a lot of research I found out this is happening around the country and I am NOT delusional. Google Stealth Euthanasia and see where it IS happening and if we don’t wake up and accept this, it is going to happen to many more of our elderly and those that cannot fend for themselves. I can’t bring my sweet Momma back but I promise to let others know so they don’t suffer the same fate under medical predators! My Dad, sister and I will have to live with knowing they killed her while we stood by asking what was wrong and they lied to us every turn. We tried to move her to the hospital and were convinced that they would give her fluids and she would drown and that is a horrible way to die… there are so many instances of their manipulations that it makes me sick.
Fentanyl was developed for cancer patient’s pain. My Mother did not have cancer but fentanyl is being used for so much more than that today. I have no doubt to coin a phrase “big pharma” has it’s hands is these stories. Profit! And this was a non-profit hospice and when I did the math on how much medicare had already paid, my Mom was close if not over the hospice cap of lifetime limit of $28,404.99. Additionally she had spoken out about not being happy with the staff changing all the time so they no longer received positive reports and were running out of funds so they had to hasten her death and get their money. Again, I have the medical records and it is clear.
Bottom line to all you naysayers – I’m happy for you that your loved one wasn’t murdered this way, but don’t attack those who have seen it first hand and know what the truth is! Walk in my shoes before you try to tell me what it was like because YOU do not know.
This conversation only serves to make people who had no choice but to follow the Doctor's wishes and allow morphine to be administered feel guilty about their decision. I was told the same thing that you just stated, that my Mom would basically drown in her own fluids. That she would be like a hot water bottle. Thank-you so much for reminding me of this and making me feel bad all over again.
Murdering people actually stops hospice receiving money. Dead patient = no more Medicare payments. The higher the patient load the more money a non profit hospice receives. The mother's pain was being managed properly if she was comfortable enough not to want to take the morphine. However to remain pain free it is important to keep dosing so the pain does not return.
Any drug has to be prescribed by the MD. Hospice workers can't just show up and start using anything.
If the mother was being cared for by an elderly husband it was probably seen to be too much and unsafe for him to manage alone.
Indeed people can live 10 years with CHF - I hope I get that lucky! I remember being in acute heart failure and lying on the floor coughing and gasping for breath with fluid running out of my mouth and nose. I was able to return to the hospital and was properly treated and recovered but it is something that gets worse and eventually is a killer. Fluid is the worse thing you can give to someone in heart failure they are already overloaded.
You are entitled to your opinion and in your grief it is very easy to find someone to blame for Mom's death which you clearly were not expecting. As you firmly feel Mom's death was due to the actions of Hospice personnel then proceed and take action either by sueing or reporting the hospice to the police, filing a law suite or reporting to your State's Health Board
Gershun don't worry about being attacked I think Prolife has gone back into his cave. That is unless the Admins have seen him off.
No one. Ever. Goes. To the police.
Weird.
Family members can step in to advocate for their loved ones at any time by speaking with the physicians.
Hospice admits folks with a terminal diagnosis. An order for hospice is a doctor’s order made in conjunction with the family after determining a poor soul is very ill, most likely at end of life & “about to go home” to their Maker & will not recover. This decision is not made easily or in a bubble.
It’s hard when one of our family members and our non family loved ones get very ill & will not recover.
Personally I would choose the hospice option (and did choose Hospice for my mother) to treat end of life & having a terminal illness & no quality of life remaining. These folks need to be provided comfort and care. It pains me to hear of negative experiences described above as this was not my experience.
Yes medication is prescribed for alleviation of pain and decreasing suffering that may occur at the time leading up to death.
I am not going to judge anyone’s opinions in their own personal situation as I don’t doubt they happened, & at a very vulnerable time as well for the family.
I don’t look at seeking hospice as playing God either. Reality is that people die and it’s a part of life. IMO Hospice was my choice for my mother & it turned out to be the right decision for us.
My mother wasn’t over medicated either. When she passed in the middle of the night she appeared comfortable.
Hospice did not kill my mother.
Every terminally ill person should continue to be able to review hospice as an option @ end of life.
For those caregivers who feel their loved ones were overmedicated, I am sorry.
The hospice “cocktail “ doses are individualized & monitored for effectness frequently to maintain the person’s comfort. Often doses are titrated up to provide symptom relief.
Yes the meds offered by hospice are to provide sedation. Sedation & pain relief is often desired due to the adverse effects of the terminal disease.
Please don’t rule out Hospice for your terminally ill loved one. Keep your options open.
Of course, nothing is perfect, hospice included. Families have a say throughout hospice as well. It’s good to know Hospice is available for consideration.
Iknowthetruth, I have a good deal of sympathy for you. For my mother's end of life care we had excellent visiting nurses, first rate. But doing the rounds of hospital departments and outpatient clinics and rehab and so on, I heard other nurses, and some doctors, and all the dietitians we encountered (I'm sure others are great), and a PT or two, talk utter twaddle about health conditions and their management.
There were also at least two occasions when vigilant practitioners screeched to a halt on medications - spironolactone put my mother's potassium levels through the roof, it could have gone unobserved and stopped her heart; and oxycodone caused hallucinations because my mother's poor kidney function meant her body could not break it down as normal and she was, in effect, overdosing.
The key word is vigilant. These two people did not leave it 'til the next appointment - they checked, and acted.
Quite often that does not happen. Routines are followed properly, but those routines do not allow for close *enough* monitoring. Or, there isn't the necessary continuity of care. Or, there isn't the effective communication and co-ordination required to support someone with complex co-morbidities.
Care is not as good as it could be - if everybody involved performed at their best all the time with the support of an optimised care framework.
Incidentally, that's what the now infamous Liverpool Care Pathway was intended to be: an optimised framework, designed to ensure that terminal patients received complete comfort care without onerous, painful, futile interventions. Its aim was extremely desirable. Its execution, and now its reputation, were dire.
If I may take the liberty of summarising your assessment of events:
Your mother was (1) admitted to hospice in the third quarter of 2017. She was then living at home with your father, a ?retired hospice chaplain known to the facility and entitled to "professional courtesy", so to speak. Your mother's hip pain had been managed with (2) hydrocodone and your mother took a stoical point of view. Medicare was covering hospice costs; there is a cap on the cover; your mother had either reached or exceeded this cap. Waiting until her doctor wasn't looking, your mother's hospice team at the direct or indirect behest of Medicare removed your parents from their home and transferred them to a facility on the pretext of offering your father a respite break.(3) At the facility, they carried out planned euthanasia in order to finalise their costs. Throughout this process the hospice team ignored or overruled your parents' wishes regarding admission to the facility, emergency admission to hospital and drug therapy.
(1) I'm sure you're aware that a life expectancy of less than six months is a criterion of admission to hospice? So to make that recommendation, your mother's doctor cannot have been treating her heart failure as a manageable long-term chronic disease: it must have been an acute presentation at quite a late stage. Do you happen to have a record of what her measured heart function was? If there's an echocardiogram result, you want to look at the Ejection Fraction.
(2) You don't happen to know how long your mother had been taking the hydrocodone for her hip pain, do you? There can be all kinds of reasons for amending pain relief px's; and one that springs to mind is that codeine family members can cease to be effective. Fentanyl is extremely effective; and easy to administer. Also, there are strategic health policies in place to reduce the overall amount of codeine prescribed (I know that's not relevant from an individual's point of view, but it is an explanation of the presumption against px-ing codeine). On the issue of your mother's personal limit of an 8/10 pain level's being acceptable... It's so very subjective, isn't it? So hard to define. So hard to plan ahead, long before you know what it's like to be positioned and transferred in a hospital bed when your hip has no cartilage. And then again, there's the pain a person reports when he's lying still and being asked about it; and the pain that makes him cry out when nurses are moving him.
(3) When the hospice staff arrived at your parents' home to check on your mother, what did they find? Your elderly father was her primary caregiver; well, I've done that caregiving job and I was in my early fifties. I can't imagine how much more difficult it would be for an elderly gentleman. Your mother was very ill. You and your sister were not on the scene. What do the notes say about the situation in that particular moment?
I want to ask this delicately, without offending you: what explanations have you been given about the latter processes of congestive heart failure - specifically, its knock-on effects on kidney function, respiration and brain function? The thing is, for example: morphine in these circumstances is not given for pain relief, it is given to improve the quality of respiration in patients whose lungs are overloaded with fluid; it does this by slowing the rate of breathing, in order to allow each breath to be deeper and take in more oxygen.
I was fortunate that my mother was able to tell me whether or not she wanted her oral morphine, and except on two occasions she didn't need it. It sounds as though the facility may have been less anxious about giving it than I was (fair enough: I was a frightened amateur, they knew what they were doing), and certainly as though they made a complete hash of explaining how it worked and relying on your mother's informed consent. But that does not mean that their intentions were either callous or malicious. What they did does not show that they did not intend to act in their patient's best interests.
I'm going to stop at this point because I don't want to antagonise you, I am not against you. Have you had any discussions with your mother's hospice team about your fears of what took place?
How is your father doing?
Some people have good results from hospice and have stated that and I'm happy for those. Our situation was not the same. I don't attack others who have good things to say and don't believe I should be attacked for what I know.
People just need to know all sides of the stories before they experience what we did.
If interested read http://www.hospicepatients.org/this-thing-called-hospice.html
for many others who know what occurred.
Thanks again CountryMouse for your compassion
P.S. My Dad lives with me and feels guilty that he let them take her to that place where she died, but otherwise he is doing well.
Why does everybody (at least on this forum) who's convinced that hospice murders just go around to online forums trying to convince random strangers this happened, instead of going to the police, where these alleged murders can be investigated and hospice can be put under better scrutiny?
I'm sorry to be blunt, but doing nothing more than posting randomly online greatly resembles the behaviour of conspiracy theorists. So that's how you appear to people like me. I'm sorry for your loss, but it's really hard to take your concerns seriously when you take zero real world action. It defies all logic.
Also, you know you can be charged with a misdemeanor for failing to report a crime, right? And you do know the police can trace your IP through this website and find you in real life, right?
It isn't a conspiracy theory. Yes, I have contacted the above to no avail and not because I want any money but because I don't want this happening to others. Many feel just like you naysayers that if she was in hospice than she must have been dying and just accept it was her time. You weren't there and you don't know what we were told etc... I'm not debating what you think etc... just trying to make sure the word gets out. If you feel your loved one is safe, then that's your call. If you are really interested in knowing instead of attacking others who have lost someone to the hands of hospice then do your research. Check out stealth euthanasia. Interesting that there are a lot of people out here now starting to see their situation isn't unique.
Sometimes people overdose accidentally by taking too many prescription PILLS, or by mixing them with alcohol or illicit drugs.
The dangers of fentanyl mainly revolve around unregulated, illicit street fentanyl PILLS or POWDER (often laced with other opioids like heroin)......or street carfentanil pills or powder (which is heroin laced with elephant tranquilizers).......or from people trying to get high by smoking or chewing stolen fentanyl patches.
I trust your LO was not smoking or chewing the patch.
Alternatively, if a patch were accidentally heated while on the skin, such as from a heating pad or electric blanket, it could release an excess of fentanyl.
Even my cat had fentanyl patches, which were used in combination with buprenorphine. As the vet explained, fentanyl patches do NOT provide complete pain relief on their own, and need to be ACCOMPANIED BY another painkiller.
My cat was old and sick, but it didn't kill him. Cancer WOULD have killed him, but since we're allowed to euthanize suffering animals, that's what I eventually did, rather than let him starve to death because of the tumor in his jaw.
I would also like to hear more (or even some) details about your attempts to get the police to investigate this matter. I'd love to know what specifically they told you after listening to your concerns and/or investigating the matter.
A. Never.
Allowing, let alone encouraging, him to believe that he stood by and allowed his wife to be killed seems cruel to me.
You have taken your mother's medical records to ... whichever authorities. I *hope* you have discussed them point by point with the hospice management? I hope you have been through them with your mother's former GP?
But no matter what explanations they or anybody else can offer, or what concerns they promise to take on board and address, they can say nothing to persuade you that your mother was not intentionally killed with the aim of saving Medicare some money. Not even very much money, at that, not in the scale of things.
I don't think there's anything more to be done except hope that time and prayer will bring you all comfort.
Jeanne makes a good point - why didn't a medmal attorney take the case? Good ones obtain records, have them reviewed by a practitioner in a similar field, and base their actions on that recommendation. Good attorneys don't take cases that lack a medmal foundation.
Furthermore, there has been one situation in my life when hospice was desperately needed, and a second occurring now. It's absolutely necessary to avoid further pain, confusion, despair, agitation over recognition of impending death.
I will never understand why people don't educate themselves on the death and dying process, ask questions at the time, and refrain from ranting on and on about hospice. Everyone needs to self educate and ask questions of medical practitioners instead of making uneducated assumptions. Do you people really feel qualified to opine on medical issues? On what education do you base your expertise?
I am so thankful that I already had my father in a SNF which also handles Palliative and Hospice Care so that we were able to segue from one to the other in the same facility, with the same outstanding care.
And while I love my father and already mourn and miss the person he was, I also want to see his suffering ended. He has no quality of life now, it's hard for me to see him suffering, and I'm relying on hospice to help guide him through this maze to a peaceful end.
I found Atul Gawande's book "Being Mortal: Medicine and What Matters in the End" to be very educational. I've loaned my copy to a couple of people so far and they both found it meaningful. I recommended it to my book club, and every single person was glad to have read it (and that doesn't happen real often!)
As a surgeon, Dr. Gawande is disappointed in medicine's approach to death and dying, and he has some encouraging examples of how this is beginning to change.
I see my father deteriorating daily, and I want relief for him. At this stage, there is no way he could ever make a comeback, and his life is a living hell right now. I even asked for more regular morphine today. It's just so painful to see him struggle.
My stepmom died of breast cancer in hospice. The staff were amazing. You could see the love and compassion they felt just in the way they were with her. You could sure see it in their very real tears after she died. And they were so supportive and communicative to us as family....I will forever feel a connection with those nurses, even though I'll probably never see any of them again.
The thing about my stepmom was, she WANTED assisted suicide. Desperately. She posted a notice on her door absolving anyone who shortened her life with medications that eased her suffering. One of her last acts was to make a video submission to the parliamentary committee on assisted dying. She was in so much pain. She begged every one of us to kill her. She just wanted to be free.
Then I read stories about people who think their LOs were murdered....people throwing false accusations around based on total misinformation about how the medications work....trying to frighten other people away from hospice....
I am absolutely certain I would want to be in hospice care when the time comes.
At this point, I'm ready to beg for hospice to ease my father's pain and suffering. He's obviously experiencing nothing but pain, fear, anxiety, and negative feelings; I can see the pain and pleas in his eyes, BEGGING for relief. And I hope I can convince the doctor that it's time for him to have that relief - permanently.
I am so sorry for your experience. Trust your gut. If you feel your mother was not treated properly, there are agencies you can report this to.
I encourage you to report your experience because so few people bother to, often misbehavior goes unnoticed and under reported.
Your mother was likely soon going to die, soon. However it is wrong to do anything to hasten it. Only the patient has the right to make such a decision, not medical personnel of any type.
Fentanyl and its analogs are a very strong opiates that can cause serious problems for someone who is already having difficulty breathing.
Here are the listed side affects of this opiate form a link at Web MD.
https://www.webmd.com/drugs/2/drug-6253/fentanyl-transdermal/details
There is a behavior engaged in by a small number of negligent medical personnel. It is called "using chemical restraints" to keep a difficult patient from causing problems for any type of medical staff.
Using chemical restraint means using strong drugs to keep the person asleep or immobile. In this case they are using a much higher dose than is needed to alleviate pain. They also use it too often.
It happens. Yes it happens, no matter what some people are saying here, particularly if your mother was a difficult patient.
If you feel your mother's death was hastened due to negligent care, get her hospital records and file a complaint.
There are many many excellent hospice care personnel, but too many of the negligent personnel are flying under the radar.
Sometime, too, in front of the sick person's family the medical personnel will act loving and kind, but when the family is gone, they can be very negligent.
Anyone who does not want to believe this can simply go to a court house and look up all the numerous medical negligence cases. Those who are in denial about such abuses will be horrified.
I know I am late to this thread, but perhaps it will help others reading it.
I can not believe that someone was so defensively calling for this thread to be deleted. If they work in the medical profession they know about using "chemical restraints."
Perhaps it is a dirty little secret no one wants to get out to the general public.
Also, after a death occurs due to neglect, it may be difficult to prove, and it is even more difficult to find an attorney who will be willing to take on a case.
Even if one does, it is likely to be an extremely expensive proposition. Therefore unless the person is very wealthy, most lawyers will discourage such lawsuits.
For those who suggested going to the police. Once a person is dead and buried, particularly a very sick elderly person, the police will most likely not get involved.
Even, if the elderly person is still alive and the family goes to the police, the police will suggest getting and elder care attorney involved and engaging in a civil suit.
Also for those who suggested taking out a full page advertisement in a paper outing the hospice, that would only expose the family to a very expensive libel lawsuit.
These cases of neglect are very difficult to prove after the fact and sometimes during the fact.
There is a radio show every Tuesday night at 8 p.m. EST about what happens in some cases. I can't speak for everyone's experience with hospice and don't attempt to. Listen if you care to. I wish someone had shared with me this information before we lost our Mother. Marti Oakley TS Radio: Hospice Survivors and Victims with Carly Walden Tonight is with Alex Schadenberg the executive director of the Euthanasia Prevention Coalition and International Chair of the groups working to stop euthanasia and assisted suicide. (917) 388-4520 to call and listen if interested.
Until it happens to people, they don't believe it and therefore attack anyone who had it happen to them. This forum is for everyone to make comments - not to be attacked and challenged about their experience or called a troll. It's like if we don't agree with what you say - we are misguided or crazy. Really? I don't criticize you for your story or your beliefs.
I am unhappy when people are attacked for stating their point of view. And although I certainly do challenge, I do it to question and to clarify, not to dismiss somebody's opinion let alone to belittle their beliefs about what happened.
Such-and-such a person states that such-and-such a thing happened. There are gaps in the account, there are ambiguities, there are sometimes conflicting, even mutually exclusive, assertions. Is it really impossible that the person's understanding of what took place could be incomplete, or even wrong? Aren't you interested to know what the evidence is?
Set against that, what is being alleged is not negligence or error but a grotesque abuse of a position of the greatest possible trust. The allegation is that, in consideration of a comparatively small amount of money, at the behest of their employers, people who have dedicated their professional lives to the comfort and protection of their patients instead of providing that care intentionally and systematically kill them. There is no more serious accusation. To expect it to go unchallenged is not reasonable.
Further to underline the gravity of the issue, Heather, you say: "However it is wrong to do anything to hasten it [a person's death]. Only the patient has the right to make such a decision, not medical personnel of any type."
Actually, no. In most states, not even the patient has that right. The law entirely forbids the decision; and in my personal view the law is right to forbid it because there is a line to be held.
I've been a nurse for 39 years.
Let's talk about "chemical sedation". I had an elderly demented lady on hospice. She and her son lived in an apartment. She screamed at the TOP of her lungs for 48 straight hours! Hospice was ordered by the doctor but the son refused to have the nurses give any meds, saying that his mother wouldn't eat when medications were given. So we sat through 8 hours (each shift) of screaming. The woman was worn to a frazzle. So were we and all her neighbors. Nothing we did would calm her. She was wild but fortunately imobile.
On the third day, the son finally gave in, we gave her an anti anxiety medication and she fell into a deep sleep. NOT because the medication was too strong, it was because she had been out of control screaming for 2 days without sleeping. She was exhausted. It was mean to deny something to help her.
My 95 year old mother (stage 6 Alzheimer's) frequently gets agitated and screams out or hits. She takes a benzodiazepine (anti anxiety drug) to "control" her agitation. She is calm and easy to talk to now when we visit. She is being "chemically sedated" but it benefits her and those around her.
Do you remember having to pick up your baby because he couldn't soothe himself? He'd just scream and cry until you intervened by holding/rocking him. That's what we are doing with our emotionally out of control demented patients that can't self soothe. Medication helps them relax.
I've also sat at the bedside when a terminal person is dying who is terrified and/or in intractable pain. These patients CAN'T regulate either their anxiety or pain. Watching a person who is moaning, crying, thrashing about, wide eyed in terror MUST be helped to calm down, just to be humane.
Maybe you've never seen these sort of things but it is merciless to not intervene to relieve them of their suffering.
So, better a dying person be calm, or even asleep, than the uncontrollable terror-producing alternative.
I've been at many deaths but have never killed anyone. But I have relieved a lot of discomfort.
I've had hospice patients that were not close to death (terminal but not imminent) and were on service for pain control or intractable nausea and vomiting. In the case of pain control, it is our duty to keep them as pain free as possible (that's WHY they sign up for the service), so they are medicated with narcotics. It's great for relieving pain. What happens to a person who gets rid of pain...they can finally get some rest (sleep). Also, when someone doesn't feel nauseated or puking their guts out anymore, the same thing happens....they can finally sleep.
I hope my experiences have shed some light on the hospice subject.