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I just want to comment on this: "Whether you believe in the morality of assisted suicide for terminally ill patients or not, it is and has been a reality for a long time,"

I DO believe in assisted suicide, and I think it should be discussed and legalized in the US and abroad. BUT, what we currently have is SECRETLY assisted suicide, which is abhorrent to me. The patient and family MUST be involved. This is the problem. Until we talk about the fact that it should be an option, and until we involve the patients and family, it's not assisted suicide, it's negligent homicide.
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When the family and patient are not informed, it's murder, not negligent homicide, and this should not happen ever. My reference was to point out the reality that morphine and medications are routinely used in hospitals, in care facilities of all sorts, and in the home, to hasten death and that it's more common than most people think it is. And that some people appreciate that this happens, whether it's legal or not. Not at all questioning the morality of the underlying issue, as it says.
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To hansolos - I have a question, because I'm not sure what you meant when you said, "I honestly think hospice is prolonging her life & for the better. " It sounds like she is in a coma. Please explain why prolonging a coma would be for the better. Or did I mis-read something? It just didn't make sense to me. Is it better for her, or better for you that her life is being prolonged? I don't get it. ?
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Oh noooo she's not in a coma at all. She's awake, alert, walking, eating think it's prolonging her life because she is no longer receiving invasive procedures at the hospital, which her body can no longer tolerate due to her condition. Since her last procedure for a brain hemotoma, she isn't herself really, big personality changes...but slowly I see glimpses of HER. At home hospice will still give antibiotics and/or Iv fluids for dehydration should it come to that point. Other than that, she does not want to be hospitalised, no invasive procedures so for her this is giving her a certain quality of life without being poked and prodded when nothing can really be done to 'save' her at this point
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There are so many variations in how hospice is implemented. The hospice service we used would NOT give my mom IV fluids and that is the core of my conviction that they were on a mission to end her life as quickly as possible. Before I signed the papers, the hospice representative gave a non-committal answer when I asked if she could have them, but when I wanted them to give them to her they wouldn't and I was told I must not be clear on what hospice is". They just wanted to poison her to death with Ativan and morphine (and yes, I believe this is a form of murder...but I signed the papers so that makes me an accomplice, doesn't it?) So Hansolo, your SIL is incredibly fortunate to have you caring for her but you may find when the time comes that those IV fluids might get withheld after all. We were promised all kinds of things to get us to agree to hospice, but the only thing that was delivered was Ativan and morphine.
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If I feel they won't, I will call an ambulance. I do get what you mean though....I've had to fight for certain medications because they are very expensive, I went around them and went straight to Medicare. It's ONLY because I've been through this before with grandparents and I'm not in a state of shock and SIL is younger and stable for the moment I know how to deal with them....they can't bully me. With my grandfather on hospice I saw what you experanced...morphine morphine morphine...Ativan Ativan ativan... I'm catholic and was very uncomfortable with the situation, but I was not the decision maker, my dad and my aunt were. We talked about it (well, dad & aunt did) and they felt it was appropriate. After that experance, I stopped giving a shit WHAT medical staff advised for end of life and fought for what I deemed appropriate. As my dad was passing I told a doc in no uncertain terms I would insist my dad be fed. I took him off vent, I signed a DNR, but that was my line. Personal choice, not advocating that for anyone else or saying anyone is wrong for deciding not to continue nutrition, but I had decided food and water were never to be withheld with my dad. I was in your shoes with my grandpa, so I know EXACTLY what you're talking about. You, on the other hand, DID NOT ASIST THEM. they were supposed to respect your wishes and give comfort and them being professionals, you trusted them. They can bully you into doing what they think is right, where it may not have been the right thing for your state of mind....hold on to the fact your mom passed pain free and you did the absolute best you could. They should have given you the choice and walked you through every step and every process. That particular team was very wrong in leaving you feeling this way. Even on this team one individual on the case was all about 'drug her up so she's comfortable' and I told her those meds in those doses would take her out in 3 days. One individual does not mean all of hospice is like that at all, most are caring and compassionate, some should not be in that field of medicine at all. Sadly, I've been through this enough times with both sets of grandparents and dad and my sister that I've seen the most beautiful dignified passing of my grandma on hospice and the bad experance with grandpa. It is still preferable than in the hospital when there is no hope of recovery....my other grandma and sister and MIL all went in ICU in horrible pain and awfulness even grandpas passing at home that way was absolutely preferable
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Hansolo, I wish you were my SIL! Through this forum and in personal life, I am hearing more and more stories that parallel mine. My husband's ex was put on hospice care a couple of days before Christmas...my stepsons took pictures of her sitting up, talking, interactive. She doesn't look healthy in the pictures (drinker, smoker) but not terminal. Not even particularly sick. They signed the hospice papers, consented to morphine, went out for a bite, and returned two hours later to find she had passed. It's just too shocking.
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@2smart...oh yeah, that's exactly what can happen. Right now this hospice team is in shock because she's better than she was. For me hospice is for when you no longer want procedures or can't tolerate them and want to stay home. She can deal with a certain amount of pain, but I never let it get too bad...I also refuse to drug her to the hilt because her liver can't take it. Constantly monertring her because I can't go by the clock on what she can tolerate. I'm prepared for her to be with us a day, or a week, a month or a year, but it won't be because she's over medicated, that's for damn sure. Lol, I take you wishing I was your SIL as a compliment! Anyone out there considering hospice, it can and should be done on their terms, what the family and the loved one WANT, not the way they want. Don't be bullied, not take their word as gospel, they are only human, a degree and a badge do not make them GOD, if you see something you're uncomfortable with say NO. Those who've already lost a loved one, you didn't do anything wrong, they did by lack of compassion, not walking you through it and making you feel as if you had no say...ultimately they are employees of your loved one, their insurance pays them. They are so wrong by leaving you feeling this way.
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I have experienced this as well, having an alert father, who passed just a few days after being admitted to hospice. However, I am a hospice nurse. I fully realized that his disease process had reached a point where the disease was going to take his life, not the medications used by hospice. I could only work to ensure his comfort. It was a comfortable death, despite his widespread cancer!
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@Dogabone ... you're the one who is clueless. I've seen it happen several times. Rosie123 has it right ... and it needs to stop.
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I am seeking answers to the same question - what is the purpose of hospice and how is the timing of the 'service' managed? We are not professionals and hospice was called not to help my partner 'die peacefully without pain and relieve his anxiety' (from a year of insomnia), but actually to deactivate a pacemaker which was not really used, even though his diagnosis was/is heart disease. A huge misunderstanding. Only an electrical outage in a huge storm forced us to revoke hospice on the fourth day of morphine/ativan. His breathing got slower and slower and he needed oxygen. We called the fire department for a generator and they could only take him to hospital, since the oxygen machine could not work without electricity! The storm saved his life! I highly question this service, not its goals whe totally appropriate(?) but its shortcomings, especially the lack of concern/steps to provide practical 'life support', i.e., hydration, help with urination (or sure kidney failure) for example. And what about stopping vital medicines like lasix which results in build up of fluids in the lungs? And severe constipation, since how can a drooling person with a closed mouth take a stool softener pill? Someone please shed light on this issue. Casse in California
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From a son who lost his mother to Ovarian cancer to becoming a hospice nurse.

Let me start by saying Hospice is a phenominal thing speaking as a patient and a Hospice nurse. Thank whoever you believe in for the narcotics and other medications for symptom management and a nurse who knows how to recognize these signs and symptoms and administers responsibly. So that loved ones dont cry out in pain, have the look of dicomfort, difficulty breathing because body system are shutting down and their lungs are filling up with fluid For there has been numerous studies and tons of evidence proving that these drugs do not cause death in the already dieing patient as the body metabolizes these drugs differently than a healthy person.

How selfish is it to want that last word and keep your loved one awake in a suffering state so that they can afirm your feelings of love. The thing with hospice is that many people really truely dont understand what it is all about. When I got this opportunity to be a Hospice nurse I was truely blessed to be able to affect so many lives. I can make a negative situation positive. You are supposed to treat the family aswell as the person latying in the bed.

I am sorry for those who had bad experiences with hospice because it was the failure of that nurse and social worker to explain and educate on the dying process. Death happens so differently for everyone no one death has been the same for me. I have had people how have taken upwards of 120mg of morphine an hour for days at a time, for the lay person that is a heck of alot and would kill me a healthy person. There are others who took 10mg an hour and lasted hours, so they are all different.

The fact is we love our people and want them arround for ever. We need to be realistic and not be selfish and make sure our loved ones pass in peace.
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@cassestar

Best wishes.

Hospice is intended for end of life care and should also help loved ones cope with the loss. Hospice is often initiated by the Attending Physician by sending a consult to a hospice organization to see if they meet criteria and the family to should be involved in this decision.

Service are generally revoked when a loved one is taken to the hospital because it is considered an attempt to save or prolong their life when their diagnosis is such that they may be terminal and at the end of thier life. It often indicates that the individual and loved ones are not ready for the inevidable which possibly wasnt explained to you.

Not knowing his exact condition makes answering some of your questions difficult but for him to be admitted to Hospice his prognosis isnt or wasnt good. Lasix doesnt reduce fluids in the lungs it helps with generalised edema and blood pressure. In the end stages of dieing people tend to drink and eat less if at all. They make liquid stool softners but having a stool is the least of his worries. We often put in catheters so we can monitor urinary output. again not knowing specifics makes it hard to answer.
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@scarlita65

Sorry for your loss and horrible hospice. I would have gotten her the meds for pain and discomfort ASAP. I dispise nurses who wont medicate. All the signs and symptoms of discomfort I look for you explained.
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Papscal so glad to read your comments about the true nature of hopsice. I would just add that a patient can be admitted to hospital for various reasons at the ned of life and need not be discharged from hospice. However life saving measures will not be given as long as a vald DNR is available. Bowel management is still important because it can cause great discomfort. After a manual examination is performed an enema can be given. Removal of excess of excess from the body may be accomplished by the use of diuretics or other means but like every other marvel of modern medicine at the very end nothing slows the dying process and the on treatment is directed at comfort and this includes comfort for the family as well. Becoming a hospice worker takes a great deal of knowledge and commitment. this applies to the entire team not just the nurses that you have most frequent contact with. Everyone has their own needs and demands so some people will always hold different views of the care recieved. The goal of hospice is neither to prolong life nor end it faster. No one is forced to use their services.
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Totally agree.my mom was being killed by hospice,we we asked was she in any pain , we asked mom ,she said no, hospice nurse showed up requested by doctor,they start mom on morhine ,eery 4 hours, we would come to visit .breakfast tray ,not touched ,she was not woke up to eat,we asked when will she be awake.no drink no food,so I asked why you killing my mom,they respond ,he s dying not eating first symptom,day,I asked what is her meds ,for pain morphine every 4 hours, ,I as son, said I do not agree, you are not treating my mom,they said if I want her alive send her back to the hospital,mom was dehydrated, lived January 25to October 2 , that year, talking eating pudding ,drinking milk shake ,10 months ,after,hospice was fired,so what is your opinion, they were shortening her life and killing her, but end result was nursing home neglect, and saying mom was diagnosed with c- dif, multi anti biotic poisoning , was rushed to hospital which she returned from only a week before,when was taken in hospital was given multiple antibiotics ,caused her heart to race over 200beats ,then they shoed to slow her heart ,and she died, strange thing was we were told she died 4:pm, we were then told she died 7pm,,4000.00 For autopsy,we could not afford, Why ,why,why family suffers at hands of nursing and doctors ,and their is nothing to o about it,any answers?
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Totally agree.my mom was being killed by hospice,we we asked was she in any pain , we asked mom ,she said no, hospice nurse showed up requested by doctor,they start mom on morhine ,eery 4 hours, we would come to visit .breakfast tray ,not touched ,she was not woke up to eat,we asked when will she be awake.no drink no food,so I asked why you killing my mom,they respond ,he s dying not eating first symptom,day,I asked what is her meds ,for pain morphine every 4 hours, ,I as son, said I do not agree, you are not treating my mom,they said if I want her alive send her back to the hospital,mom was dehydrated, lived January 25to October 2 , that year, talking eating pudding ,drinking milk shake ,10 months ,after,hospice was fired,so what is your opinion, they were shortening her life and killing her, but end result was nursing home neglect, and saying mom was diagnosed with c- dif, multi anti biotic poisoning , was rushed to hospital which she returned from only a week before,when was taken in hospital was given multiple antibiotics ,caused her heart to race over 200beats ,then they shoed to slow her heart ,and she died, strange thing was we were told she died 4:pm, we were then told she died 7pm,,4000.00 For autopsy,we could not afford, Why ,why,why family suffers at hands of nursing and doctors ,and their is nothing to o about it,any answers?
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Totally agree.my mom was being killed by hospice,we we asked was she in any pain , we asked mom ,she said no, hospice nurse showed up requested by doctor,they start mom on morhine ,eery 4 hours, we would come to visit .breakfast tray ,not touched ,she was not woke up to eat,we asked when will she be awake.no drink no food,so I asked why you killing my mom,they respond ,he s dying not eating first symptom,day,I asked what is her meds ,for pain morphine every 4 hours, ,I as son, said I do not agree, you are not treating my mom,they said if I want her alive send her back to the hospital,mom was dehydrated, lived January 25to October 2 , that year, talking eating pudding ,drinking milk shake ,10 months ,after,hospice was fired,so what is your opinion, they were shortening her life and killing her, but end result was nursing home neglect, and saying mom was diagnosed with c- dif, multi anti biotic poisoning , was rushed to hospital which she returned from only a week before,when was taken in hospital was given multiple antibiotics ,caused her heart to race over 200beats ,then they shoed to slow her heart ,and she died, strange thing was we were told she died 4:pm, we were then told she died 7pm,,4000.00 For autopsy,we could not afford, Why ,why,why family suffers at hands of nursing and doctors ,and their is nothing to o about it,any answers?
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Our family was against hospice since they believed that they make you die quicker. Well mom was in the nursing home memory care unit and just quit eating and drinking. One morning they called and said she was unresponsive and that I needed to come. When I got there she was fidgeting around in the bed trying to push the blankets down and trying to get up. They did not want her to get up because she was actively dying. They gave her the atavan and morphine and just kept on until she passed. It is hard to watch someone in the dying process. After the meds she just was resting and I asked if she would wake up again and they said no. I was meeting the day after she passed to put her on hospice, but she died before I could. I knew that she always said don't let those people near me. So I was reluctant, but in the end the nursing home gave the meds.
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It is really easy to lay blame when you arent ready for the passing of your loved one. Really with all the posdibilities it's not hospice or the nurses. For all you Christians I personally blame God. It's gods will. Really hospice is there for their comfort and when iam hurting or dont feel good i tell my loved ones everything is fine and suffer in private. Like a hero Hospice is what you need it to be.
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I understand a nurse giving the patient morphine for pain when the patient denies pain. My mthr had a softball sized colon cancer in her side and would wince visibly when her tummy was mashed, but denied she felt anything at all. After the surgery, she did not understand why she had a line of staples up her tum. Now that she has big adhesiions or a mass and we suspect a regrowth, we can't get her to admit any pain at all. Our hospice nurse has seen enough patients to know when the patient is being brave and actually could use something. I am thankful to know that mthr won't suffer through death the way she suffered for years with that big cancer.
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Papscal, I find you to be very patronizing, just because you're a nurse doesn't mean you know everything and can speak for all hospices.

As I already posted a few pages back I reported to the state the issues we had with the hospice my mother was in. It took a few months but the state did an unannounced onsite visit and found several violations .

Too late for our family, but if it helped other families going forward it was worth the effort.

So please don't say "hospice is what you need it to be", it certainly what my family needed it to be, and we're not alone.
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@ irishboy

I am sorry that you had a bad experience with your hospice. Alot of families just arent ready and certainly some hospices suck.
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Honestly hospices that I am associated with / work for are not for profit and families keep their loved ones at home to die which is what hospice was originally intended for. People/companies looking to make big money from death dont spend monwy where they ahould and dont treat patients and families as they should.
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Yes it was a horrible experience, it was a corporate run hospice. I still have the letter stating that violations to care and rules were found. Too late for us, but if it helped other families.

I remember weeks later a woman from their main office saying her sorry she was and that my story made her cry, I told her I don't want to hear it, I am not calling about a bad meal at a restaurant, there are no "do overs", no going back on this. Too little, too late.

I also told her my father is a very generous man when it comes to charitable donations(and he was) so you screwed yourselves, because he was going to donate money until we went through this horrific experience.
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My Mother passed away Feb 23, 2015 while in Hospice. She was placed in Hospice Care with COPD. After several trips to the hospital, they told me there was nothing else they could do for her so they recommended Hospice Resident. I wish I understood more about hospice before she went. I believe if I had insisted she go in the hospital then she would have gotten better and gone home at least for a little longer. It's very hard to live with. She only lasted about one week on Morphene pump and Ativan. Completely suppressed her breathing till she just slipped off 8 days later. It may have been a peaceful death for her but my life is traumatized and while her tears have been wiped away in Heaven, mine remain. My Mither was a fighter and Hospice was no place for so eone determined to live. I'm sorry Mom. I'm so sorry I didn't insist the hospital admit you and work with you.
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Sadheart, I am so sorry for your loss. You did the right thing, doctors would not have recommended hospice had they not thoughtnit was the right thing to do. She may have lived a bit longer, but it would not have been much of a life. It is normal I think to second guess ourselves and feel guilty after a loved one passes in hospice. Try to take it easy on yourself.
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Gladimhere, I'm trying. I've scheduled grief counseling. It's hard to even get out of bed. I took took care of my Mother for 11 years and I feel like I was a bad advocate in a crucial moment. There are so many post on the internet about Ativan and Morphene being lethal for COPD patients. I just wish I had read and studied more before making the Hospice Choice for her instead of just placing trust in the medical staff.
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Sad, it must be very difficult. Good for you scheduling grief counseling, that will help. I have been caring for my Mom for almost four years. I know if she were to pass that it would be very difficult for me. Take care of yourself. Just try to at least get out each day, if just for a littke while.
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I've had a good experience with inpatient hospice but had 2 bad experiences with home hospice and a bad experience with an inpatient hospice (Vitas in New Jersey). My father had bladder cancer and they would not treat him when he had a urinary tract infection. My father had always been very sharp, but was out of his mind from the infection (it is common in the elderly). It was actually cruel. No antibiotics were given, but we were told he could go to their inpatient unit for treatment. We had him admitted but they did not do anything to even make him comfortable. He went from bad to much worse overnight, all due to infection. Ended up taking him down to the emergency room where he was admitted, recovered from the infection, and eventually came home without hospice. It's a terrible feeling when you are told that using a home hospice organization will get you some additional help at home only to find out that no matter how many calls you make trying to get that help, it's at the discretion of someone who may or may not return phone calls. The hospice nurse was a volunteer who worked elsewhere and was difficult to reach and more often than not did not return our calls. How is that helpful?

My father-in-law was in an assisted living, and we had home hospice for him. He started to have continuous seizures. Hospice gave some Dilantin, but he still had almost nonstop seizures. They said not to take him to the hospital. He eventually fell out of his wheelchair while having a seizure, hit his head, and had to go to the hospital. ER doctor told us about inpatient hospice across the street from the hospital. He was admitted to the hospital and transferred there and received wonderful care until he passed away. In both cases, home hospice caused more suffering rather than less. I do believe the role of home hospice is to hasten death.
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