I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
It's all part of their sales pitch because what is really is about is that hospice is a business - a big business. For-profit hospices are proliferating throughout the country.
What I did not know when the "rep" told me that my mom would lose her pressure bed, was that there were other ways to get one - and easily.
Surprise you can advertise in your local paper for a hospital bed . You will be surprised how many people just want to get rid of them. I had e seen them free or up to $100. They may not be the most modern but they do work.
If I had chosen not to use Hospice, I would be watching them both wither in pain, and how awful that would be to see a love one go through such an ordeal.
Neither parent would ever recover from their medical issues. Both had Medical Directive legal documents to which I had followed. I know there are times we think our love one can recover, but medical science can only go so far.
Karen.... as for those cases where food and water is no longer given the patient, one has to ask questions to learn why this is the case. It is because the person's body is shutting down. The digestive system is no longer working, food would just sit in the stomach and cause terrible pain. Water would be aspirated and go into the lungs instead of going into the stomach, causing a patient to choke.
If he's well enough to post on Facebook, he's alert and well enough to go get something to east! A terminal man, dying in his bed can post on FB that he wants to eat. Wow!
I understand that not everyone has vast medical knowledge. Maybe your head was clouded and you were overwhelmed at the hospice discussion/signup. Also, maybe you didn't understand what was in the booklet, explaining hospice's particular role. So, you just went along with the regimen. But now you don't like how your family member is looking or acting after the medicine was given.
OK folks, I'll go along with your pacivness up to now. But NOW is when you OPEN your mouth and SAY what you don't like! You don't have to have an MD or RN license to see that the effects of the medication is not what you wanted for your loved one. So SAY something!
People, this is the 21st century. We are no longer in the days where doctors are God and their every word followed. You are now allowed, even encouraged, to voice your opinions. The doctor has a heck of a lot more knowledge than you do but YOU have the final say as to how your loved one is treated. For God sake, what are you scared of? That the doctor will get mad for challenging his opinion? To heck with that! These days we have to be PROACTIVE not reactive. Even if you know nothing medical, you know what you see in your loved one and you know what you want. Get vocal.
If I had a nurse waiting with a syringe of Haldol in her hand and I had already told her I did not want it given to my LO and she came one step closer, I would have physically blocked her, told her I will call the police for assault and battery and immediately call her supervisor. Be forceful. YOU are your loved ones advocate.
But, gosh people, you have to join in to get what you want. YOU call the shots. These people work for YOU!
If the family tells me not to bathe the patient, I don't. If they don't want a certain medication given, I don't give it. Threaten legal action if they don't comply to your wishes. Threaten to change hospice companies. Get nasty, after all, the squeaky wheel gets the oil.
As for the supplies and equipment, all of that can be rented through medical supply companies. Too bad you may have a copay from your insurance company but at least you will have things the way you want them. (Hospice rents their equipment from medical supply companies also.)
I can't say this loud enough...GET INFORMED! The more you learn, the more powerful you are. Call meetings with the company if you're not getting what you want. (Do understand, if you want every life saving treatment for your LO, then hospice is NOT for you.) Get a backbone and grow a pair. No more sitting on the sidelines, you need to be the star player in the game. Your loved one depends on it.
To the hospice haters out there you are entitled to your opinion and feelings BUT please do not try and influence others from not using hospice services. Let them make up their own minds.
As far as that much debated comfort kit is concerned. I can only say that on a number of ocassions I wished I had had one available Our hospice did not believe they should be placed in the home. Can you imagine being called out at 3 am in a blizzard at sub zero temperatures and on arriving at the home finding the patient in terrible pain. The nearest all night pharmacy was over 60 miles away. When you need those drugs you need them NOW not when the pharmacy opens at 9am.
SueC when you mentined the glass IV set another image came to mind. The tray of glass vials with a glass thermometer filled with mercury sitting in a disinfecting liquid. What a mess that made when they were dropped and the mercury scurried away in little balls. There was holy hell to pay for that little accident.
She had CHF, pleural effusion, post stroke, post hip repair.was a happy camper for almost 4 years. Fell in NH and broke her wrist. Taken to ER.
I was very, very glad for morphine. My mom was in pain and agitated. Not the way she wanted to die, and not anything I was going to allow on my watch.
Suffering at the end of life is unnecessary
I would LOVE to do lunch. And I'm sure we'd be gabbing for hours about the horrible "good ole days".
I was on the tail end of glass thermometers but I remember how violently one had to shake them to get the mercury under 98.6. I always worried that one would go flying out of my hand and hit somebody.
I remember when someone broke one, the little silver balls of mercury were fun to poke around!
How about flat sheets staying put on a vinyl mattress (before the advent of "fitted" sheets)?
We'd lift the head and the foot of the mattress and bend it inward a little and make a knot with both ends of the sheet. voila! Instant fitted sheet. 😝
Oh, bright white uniforms! And white stockings, shoes and caps, hahahaha. They don't do that anymore either. Sometimes you can't tell the nurses from the cleaning staff.
Remember fingernail inspection every morning? No nail polish- it "hid a multitude of sins" I was told! Did your hair touch your collar? Tisk, tisk. No jewelry and minimal makeup? We all looked like prisoners.
And what about, "Always give up your seat for a doctor?" 😆😆😆😆
Gosh, I instantly feel old! 👵🏼
Bring back any memories? 😷🤕🤒🏥
My husband and I just finished Home Hospice Care in our home, after his Dad passed away last Wednesday morning, and I couldn't be more happy with the Wonderful Hospice experience my FIL had!
He Loved all "his girls and Guy Nurses, as well as his lovely bath aide, who always ended his bath session with full body rub down of lovely email entry lotion. And that little pre-filled hair wash system, he thought that was So Cool!
I just happened to be on the phone, with my Hospice Nurse, a little frantic, as my FIL had spiked fever that morning, after being near comatose for nearly 50 hours.
I had no idea his death was imminent, and yes, I panicked a bit, but she was right there on the phone with me as I checked his pulse and verified his death, and Thank God for her, as she kept me grounded, as she raced to our home to comfort us and to verify his passing.
So many times, she bolstered us up, telling us how proud she was of us, "hardly a phone call, you guys are taking such great care of him", she would tell us!
The meds were Always explained, and then left in our hands, and yes, I do have 30 years medical experience so a Medical Assistant, and have also seen my own parents to the grave and with good medical care to the end, so I wasn't exactly "green" on the subject, but still, it is different with each and every experience!
The Morphine and Haldol, Never a dose so high that it could have rendered him unconscious, it was strictly comfort care, and many weeks on Hospice, and his dose barely even changed right to the end! It was HIS BODY, that was changing and shutting down, not the meds, because it was Me who was administering them, and on schedule!
It was a septic infection that took my FIL, and thank God, "the Old Man's Friend", as had his Lung Cancer advanced to intractable pain, I'm not sure that I could have managed him, and he Wanted to stay with us, and die in his bedroom, there with Us taking care of him.
So Yes, I am sad for his passing, but I Thank God he did not suffer!
THANK GOD FOR MY HOSPICE TEAM!!!!
VERONICA, SUE, YOU GUYS ARE ANGELS IN MY BOOK!
Im sorry for your loss but I'm glad that your FIL had a comfortable passing.
We appreciate your kind words. If only everyone could have a peaceful departing experience instead of harboring ill will against the very people who are trying to make your loved ones comfortable for their transition.
Sue I trained in the UK and we were issued uniform dresses that had to at least reach the knee. We had to kneel so that Home sister could check! Also a clean white apron every morning and a full length cloak, navy blue with a bright red lining. We loved those cloaks. Not to be worn around patients though. And don't forget the cap. It came as a flat piece of fabric and it was so hard to figure out how to put it together
Never saw a pair of gloves except in the OR. They were washed and reused. If they had holes we patched them and the dental surgeons used them. Short hair must be above the collar and long hair put up. No make up , nail polish or perfume. Black stockings and shoes (well polished) I mended my thick lisle (cotton) stockings and made them last four years
Oh and seperate white collars that were starched so they left a red ring round your neck.
We could not be friends with anyone senior to us. I was friends with a young supervisor and she was warned not to go out with me. Did not stop us though we just met outside the hospital.
In 1958 there was only one married supervisor (Sister) by 1963 when I left I was one of four. Due to WW11 there were not many single men around for older girls.
Stacy I am glad you had such a positive experience with FIL. it is so recent I am sure you will miss him for a while.
To the hospice haters. Why on earth do you think they would murder their patients? Why bite the hand that feeds you? Medicare pays a daily stipend for each patient that's it no more no less and it has to cover everything which it often does not which accounts for Hospice fundraisers. They also pay their nurses less than the acute hospitals. Nurses are at the bottom of the food chain as every nurse knows. It's the admins that make the money the nurses just make it possible.
I'm sorry that you are going through this. Your wife has a terminal illness, is that right? Not clear if her lung disease is primary or if the liver failure is. But I'm assuming that the reason she is on Hospice is because she has a life-limiting diagnosis.
You say that you hope to get "this" stopped before it's too late and "there is no turning back".
What is it that you want to turn back from?
I'm going to assume that you don't want her to be in physical pain or to suffer from the terrible anxiety that often accompanies the knowledge that one is actively dying.
I'm sorry your girlfriend is near the end of her life. This is a very difficult time for everyone connected to the patient.
As I understand her situation, she was in the hospital then moved to Hospice. Maybe the order to not give Ativan didn't go with her to Hospice. You say you got the Ativan stopped when she got to Hospice. They ARE willing to listen and do what you want. It was just a communication glitch when moving her from one area to another.
I don't understand your statement;
"They are doing one thing after the other to push her closer to death as well as a is pathetic coma due to her liver failure. I hope to get this stopped before it's to late and there is no turning back."
Hun, no one is "pushing" her closer to death. If I understand your statement correctly, she is already in a coma from liver failure. I'm sorry to say there is no stopping the progression of liver failure and there is no coming back from this disease.
I know you want as much time with her as you can but she's not in a good physical state. You don't want her to suffer, do you? Wouldn't you rather forgo the little time you could be talking to her (in excruciating pain) and have her be sleepy and comfortable? You don't want her suffering as she passes. That would be mean.
I know you're heartbroken, anxious, fearful and lost without your soul mate. It's too bad you never got married so you could have the last say with her health care decisions. But that's not important now. You've got to make sure she's comfortable and calm in her passing. Isn't that the most humane thing to do? They aren't killing her, she's dying. At least let her do it in peace.
We have had it up to here with the hospice bashing
Say something constructive if you are going to post.
Comment on something you know about not wild rumors
The only "positive" of Hospice, were the sweet nurses who took care of her, bless them, and the Catholic priest and the sweet lady that accompanied him.
I think that your expectations of your mom's doctor was and is unrealistic.
Yes, in a way you are right. Hospice does not give fluids when a person is actively dying (death will be within hours), as the fluids won't be absorbed by the stomach anyway and it actually hinders the body's shutdown in preparation to die.
However, at this very end stage, the mouth can be swabbed or ice chips rolled around the mouth to keep the mouth moist. This is for the comfort of the patient.
Now lets talk about patients that are not actively dying, maybe terminal patients that have a few months left to live. Certainly they will be given fluids and food because they will have thirst and hunger and will be able to digest it. It will nourish them and they will benefit from it. So your comment is not accurate, as Hospice covers patients in all phases of dying during the 6 month period.
Now for the remainder of your statement; ..."when they give you a legal dose of morphine your condition from the dehydration makes it a lethal dose."
Wow, this is not physically possible. Who told you this? Was it a doctor?
This is a really wild concept.
At least you gave credit for a "legal" dose being given. Most people say we give lethal or deadly (overdose) amounts. Neither of these ideas are true. Dehydration doesn't cause a "legal" or normal/regular dose to turn deadly because the person is dehydrated. I can't buy that theory.
On one hand you can die from being severely dehydrated (think desert without water for 5 days) but Morphine or other narcotics don't dehydrate patients to death. Some medicines that cause dehydration are antihistamines, blood pressure medicines, chemotherapy, diuretics and laxatives.
Your simplistic statement isn't based in fact and is not true. Please educate yourself about hospice and their policies.
I believe so, my husband after a week in home hospice and fellowing instructions from that system is becoming unresponsive so quickly.
If you feel that hospice has caused the decline of your husband, then take him off hospice immediately. See how he does without the comfort drugs.
You can always reinstate hospice if you find that any pain or agitation returns. In fact, I invite you to do this experiment. If your husband rallies and is better after being taken off hospice, I'll bow down and admit my mistake. However, I'm pretty convinced that your husband is BENEFITING from his care. I'll bet you don't see him in any pain or agitation while under hospice care. Isn't that what we're shooting for? Who wants to be miserable while they are dying?
FYI, the feds aren't in the business of murdering their Medicare recipients. H*ell, most of them are in their 70's and beyond too. Actually, hospice is cheaper (by far) than keeping a terminal person in the hospital. They are happy that they don't have to pay out huge amounts of money to hospitals. Hospice is cost effective.
Please let me know how your experiment works out.
It was disappointing that her main Primary care doctor, a doctor she had been going to for several years, would visit her, but nope. Her office made sure to mention she was not getting involved, especially with the NH doctor.
By the way, mom left the hospital for the funeral home July 3, 2016, the NH doctor submitted his bills to insurance, July 4.
Dealing with the #2 rated hospital in the country, this was the case with my mom. The head ICU was "ecstatic when the decision was made to take her off life support, even going as far as going to her room when the hospice doctor was there (Hospice doctor asked him in a subtle way to leave). With mom passing only a few days on Hospice, money was saved by her 3 insurances, and the hospital got their ICU room back quicker so it could be used for someone else.
Did YOU have any say in taking your mom off life support? I'm sure you did. That isn't something the doctors can do without family consent.
Let's "disect" what you printed.
... "if the loved one is receiving hospice there (hospital), to gently nudge and/or try to encourage a family member to let a loved one go."
Having worked in ICU/CCU, there are definitely times that families need to realize that there is no more hope. It is the worst thing to have to do to "pull the plug". BUT, you would not be 'nudged' to let them go IF the doctors thought the patient would have a good chance to recover, or any hope whatsoever for that matter. When you "pull the plug", there is no hope for any improvement and leaving them in this state only prolongs the suffering.
Statement 2;
The head ICU (MD?) was "ecstatic" when the decision was made to take her off life support." In all the time I've worked in hospitals, I've never seen a doctor "ecstatic". They may have been relieved that the family agreed to let the patient go but no doctor has been jumping for joy. This is a hard time for us medical people too.
#3 With mom passing only a few days on Hospice, money was saved by her 3 insurances, and the hospital got their ICU room back quicker so it could be used for someone else.
How does this tie in with Hospice? You made the decision to remove life support from your mother, in essence, allowing her to die naturally. It's hospice's job to make sure she passes as comfortably as possible. It took 3 days for her to pass. That was God's timing. Had nothing to do with insurance companies and bed turnover rates.
Come on now.....if you deny her access to life support (which I'm sure was a good idea), then she was bound to die within a short time anyway. You've got to know that. Don't blame hospice for killing your mother so the hospital can fill her bed and the insurance companies can save a bundle. You're passing the buck and placing blame where it doesn't belong because you can't deal with your grief. Thank God she died comfortably.
I'm standing by what I wrote, because it was true. I did give consent to have her taken off life support when I paid my last visit and saw that the blood in her fingertips was bluish in color.
Regarding what you wrote, head of ICU did call me before I went to see her and subtly suggested pulling the plug. He seemed sort of "pissed" when I stated to give it one more day and maybe she would improve. He may not have been ecstatic, but when I went to see her, he made sure to be in the room, only to be told by the Hospice doctor, thankfully to leave. As I may have mentioned, the Catholic priest and the nice lady who was with him, were literally Godsends.
Insurance did save money, as evidenced by the last insurance statements. Non hospice personnel visited her and billed her insurance up until the last day. The GI even visited, and billed the insurance, even though the feeding tube she was on had been removed.
With regards to the 3 days of her dying, the same ICU head when I talked to him, said she was dead when she was bought back to ICU from the LTACH on the 9th floor. I don't blame Hospice for her death, just was giving a story of how it went for her. I have come to terms with her death, knowing she is reunited with her wonderful brother who will have been dead for 10 years Jan 2018.
The hospital did not not death in the discharge, so they sent a survey to ask how they were doing. This hospital is a branch of the 2nd highest rated hospital system in the country, The Cleveland Clinic, if that means anything to you. Thank you for you comments to my post.