I totally disagree withe the premise. If you keep the patient outside of hospice and palliative and continue to monitor vital signs at home you have established a longer longevity that can last beyond six months. The watch must be on pain, control this viper, let the patient live, just for the sake of their love ones. Further, I am anti morphine.
It is about time we start to think outside the box and change Medicares march to death With this system there is tremendous cost savings only a caregiver.

I witnessed hospice dehydrate my aunt to death. So, how can you say that it is a myth that they don't allow you to continue to eat and drink?

She was sedated with morphine and died 8 days later of dehydration.

If they would have put a pillow over her face and smothered her, it would be called murder.

But with hospice, they sedate them, dehydrate them to death, and it's called compassion.

Murder is murder!

Every single one of the above points is a bald-faced lie perpetuated by hospice. I do not understand how what hospice does can even be legal in this country.

Hospice is one big lie. Their nurses are "angels of DEATH". They lie to families to obtain another victim - I would love to know the incentives received by hospitals, palliative care staffs and hospice agencies - THIS BIG LIE NEEDS TO BE EXPOSED. Hospice is no longer a choice, but a compulsion by hospitals seeking to cut costs.

Because hospice listened to our health concerns, as well as our desires for what happened in the final months, my father-in-law is still with us. According to his oncologist he should have been dead 1 1/2 years ago. Hospice got him on a regime of meds. and control of his incontinence that he was able to sleep through the night. First time he has slept 8 hours straight in 3 decades and drink the proper amount of water his body needed. This allowed his body to get back into balance, and again make sufficient healthy blood cells. He is 95 and enjoys daily walks around his property (about 2 football field lengths), and writes letters to distant family members almost daily. Thanks to hospice.

Caregivers can find it extremely difficult to care for someone who is in chronic or acute pain. If the caregiver is very close to the afflicted, the emotional and physical pressures can be almost as trying as that for the patient. The feeling of helplessness, impending sense of loss, and empathy for the patient experiencing the pain are severe. The anxiety of seeing the loved one suffer can be nearly unbearable. And when love is involved the caregiver can stretch themselves to an unhealthy condition, mental and physical. Physical damage can often be obvious by weight loss, unhealthiness, and perhaps drug or alcohol abuse. Mental and cognitive degradation can be obvious as well. The psychological damage can lead to depression, anger, impatience and other stresses that might not be obvious to others.
Caregivers often seek professional help for their loved one while disregarding their own health and well-being. If the caregiver is not strong they might fall victim to diseases themselves that further degrade their ability to provide the support that the patient needs, thus, both suffer the consequence.
The caregiver's life can be severely affected in other ways as well, such as the loss of savings due to extensive medical expenses, loss of employment due to missed time at work, distancing by their family and friends and a subsequent feeling of isolation.
Sometimes the patient, knowingly or not, places additional pressure on the caregiver by demanding a great deal of attention. Most caregivers, emotionally tied to the patient, will willingly make sacrifices in their own lives to help their loved one deal with their pain or disease.
Often the medical professionals are not equipped to deal effectively with the patient and the caregiver. This can be from a number of reasons. The doctors, nurses, etc. might have no personal investment in the patient or the caregiver, especially in today's overloaded health care environment. The patient is passed from one medical specialist to another. This can often result in conflicting diagnoses, inconsistent treatments and confusion to those they try to treat. As the patient's pain continues their frustration increases and their outlook diminishes. This can retard their progress toward a cure.
Medical providers need more training and experience dealing with the real pain being experienced by the patient. The medical folks need to know how to gain the trust, confidence and support of both the patient and the caregiver. Often the caregiver has a better understanding of the patient's condition than the medical practitioner
Some 100 million US citizens suffer from varying degrees of pain. That's 1/3 of the country's total population, yet recognition of the various levels, causes and treatment for chronic and acute pain are lacking. People are expected, and often told by doctors and nurses to "buck it up", "tough it out", "take a pain pill", and "others a have to deal with similar pain." That is poor advice to the lay person who is usually not trained or equipped to deal with a loved one experiencing severely unrelenting pain.
Medical professionals need in-depth skills to deal with the physical and emotional effects on both patient and caregiver. Prescribing pills (many are addictive) and telling the patient or caregiver to "keep their chin up" is a weak prescription for promoting positive healing. Much more research needs done in the medical industry to find more effective treatments for those 100 million pain sufferers.
Some patients find a modicum of relief from pain through faith in a higher being, as do some caregivers. But when the pain and its cause are not responding to medical or spiritual help, the patient or caregiver ultimately have few options. One tragic choice by a few is to end their own life. Now, some states make it technically and legally possible. Yet, a purposeful killing could still be considered a murder. While that does end the immediate suffering of the patient, it may not be acceptable to God whose children we all are. Also, it must leave lasting guilt, pain and perplexing memories for the caregiver.

After 6 months of hospitalization, rehab, and the cycle repeated several times, I brought my wife home for her hospice care. She survived 9 days at home. The hospice crew did as respectably and efficiently as could have been expected. After 60 years of a wonderful "fairy tale" marriage, my pain was nearly as extreme as my wife's. The hospice made it a point to contact me by phone and letter several times, but I still had some hope. I turned to God, rekindled whatever faith I had left and it has helped me measurably. It's been nearly a year and I still cry...often.
I strongly recommend the caregiver advocate strenuously for the patient. No excuse by medical professionals for shoddy work or care need be tolerated, but it takes a lot of detail research to understand what treatment is being done to give the caregiver the confidence to challenge the medical professionals and insurance carriers. But you might be the only one who cares so deeply and your loved one will know it just as you will. And you will be thankful later.

My father was in hospice less than a day. I can never say it was an easy decision, it was the best for us and for those 24 hours of his life. I have no regrets, I hold an enormous amount of gratefulness to everyone who helped not only my father, my family too.

I am saddened by the difficult reports about some experiences with Hospice. I have been a volunteer for 10 years and have witnessed and heard so many grateful families' stories. Like every group, there can be a range of excellence and compassion. If you are unhappy with the Hospice care, there are often several Hospice organizations in an area and you can fire one and choose another.
It was a great comfort to me when we called in Hospice for my mother. They did take her off her many pills and she may have died sooner, but her quality of life was so bad that it seemed cruel to keep her in pain and suffering. They managed the pain as best they could and were available 24/7 to answer questions or make a house call when we were worried about symptoms. I have also seen people get better on Hospice when they get such good care.
It is important to complain about bad care and change when necessary.

Parts mom, sad story. I do not know why they wouldn't drain any lung fluid but do need to say that I am confident the fluid buildup had nothing to do with the morphine. Hope that helps.

Debbies1056, I'm so sorry for your loss. I just lost my Mom a few months ago from extended dementia. We saw a decline about 2 weeks before she passed. I hope you find some comfort in me telling you that when a person stops eating & drinking, they have entered into the dying process. It has nothing to do with the morphine nor hospice. At that point no routine medications would have helped if continued. My Mom failed so fast so suddenly. I was thankful that Hospice was there to guide us through her last 24 hrs. She passed quietly, painlessly in her own bed at her home surrounded by family. What more could I have asked for her? We all die eventually & easing the dying process with the help of Hospice is invaluable. Please don't beat on yourself. We can't control everything and you did the right thing.

One other point: IF your gut instinct tells you that company A is not what you want/expected; fire them. Then hire another company. A company in Texas to avoid is: Heart To Heart Hospice

There are no training courses to prepare the family for why and when to make the hospice decision. Since both parents have Alzheimer's-I learned first hand, with dad; and now with mother. Dad lasted 4 days after leaving the ICU. At least he died at home. Mother has been on home hospice 15 months and is still going. But we know the end is coming. Make the decision early! It's the best thing you can do for yourself and your loved ones.

My Mom was in the Hospital, She had CHF , Diabetes and Dementia, She was Critical, then Stable but stopped eating and Drinking. I feel once Hospice came in She died. They stopped meds, Ivs and Pumped her with Morphine, She died 3 Days later. I wish I had taken her Home.

I think Hospice is a wonderful organization that helps the terminally ill and their families, but I don't think many people understand how they get paid and how much.

I live in California and my father was dying from the ill effects of Dementia and was placed in Hospice for comfort care. The first month I received an explanation of benefits from Medicare stating they paid the Hospice Company a little over $7,000 for the month of October. Since my dad only had a Hospice prescription for 3 visits a week I felt there was a billing error so I called Medicare and the Hospice Company.

What I learned was extremely disturbing and feel this is one reason Medicare is having so many financial difficulties. The law allows Hospice to bill for every day of the month whether they see patients or not. Each California County has its own rate. So for the month of October Hospice was paid a little over $7,000 for seeing my dad less then 20 minutes since he was uncooperative for 3 visits a week.

The law needs to change on how Hospice companies are allowed to bill Medicare. Like all other medical professionals it should be based on services rendered.

Sue you confirmed my comment as the British system has many different protocols under the Minister of Health which are costly designed to help reduce the budget health cost. My understanding from family in Scotland all patients are required to take a means test to be eligible for treatment in State run facilities. Others who can pay have the option to be placed in commercial facilities. In some instances town councils handle this problem differently and I note that my cousin who lives in Scotland has been in and out of hospice many times as she lives alone and needs help. The Government does provide home help. Programs are different here in the US Medicare controls the doctors and patient stay in hospice and the commercial facility is denied payment if they violate the guidelines.

I'm sue there must be differences between the UK and US hospice systems. My sister-in-law lived in the UK and in her last days with metastatic cancer' they had her morphined to the point of fluid on the lungs that they wouldn't pull out. My niece called us here in the US, and my husband and a sister flew over there and the hospital told them that they believed in "letting them slip away peacefully." Well, struggling to breathe wasn't peaceful and the sister pushed them until they did deal with the fluid. She did live several more months more comfortably. This of course was on the National Health there; maybe some of our Brit posters could comment on our experience.

Sorry to be vague but PM in the medical profession is preventive medicine to counter other illnesses the patient requires to keep their vital in check. Hospice a UK origin and name has been used as the final hospitalization for a patient with an incurable disease and near death.. Medicare has a protocol that a patient with six months to live as determined can be admitted for hospice but if the death prognosis changes they must be discharged to home hospice. AD patients in the third stage are generally near death, I am not relating to the early stages. Medicare has the financial say as to whether they will pay for a particular service ordered by the doctor. This is not a myth but reality. In most cases the doctor will not order PM which to my evaluation is a disservice to family caregivers who want to keep their loved ones alive as long as they are pain free. What I explained is a common denominator.

Sorry, Normandy - I don't understand your shorthand...! you don't see the doctor (PM?) or get treatment, as Medicare determines your open remark (?) And maybe I understand the idea of reversal with Alzheimers - if there is supposed to be chance of reversal, then how is Alzheimers qualify you for Hospice paid by Medicare - I was wondering that too, for people often live for years with Alzheimers. Not sure what you are saying - what is your open remark? Sorry - if you want to clarify, would be fine!

Hospice to me is the ROAD TO DEATH. In reality, I do not see PM or treatment as Medicare approves that program only when the team determines my open remark plus the six month caveat. Where is the reversal with AD?

I worked for a Hospice recently, and had friends and relatives in their care programs at home and in Hospice houses. I am disturbed by all the negative perceptions others posting here have had. While anecdotal, I believe a lot of those experiences are real. To people considering Hospice in the future: should these things happen to you, speak up. If not to the Hospice provider, then call a regulatory agency. Believe me, not everything went "my way" but the end result helped my loved ones die in comfort. For them, not me. I am sorry your memories of your loved ones' final days are not peaceful for you.

We have had Hospice for the past month for my husband that is in the final stages of Parkinson's. They have truly been a blessing and everyone of them that have coe to our house has been respectful, polite and caring not only for him but for my well being. Compared to having him in the hospital or nursing home I would pick this group any day. I am sorry to hear how others feel they have been treated.

When hospice came in to evaluate, and help my dad, I was grateful for their help. When they offered us a 5 day respite, I was eager to accept. Our experience was both positive, and negative. Knowing today what I've learned since his death, life would have been very different before his passing 12/14/13. I didn't understand that there were various companies, I didn't realize there was any difference between them. I didn't understand I could request, no demand specific staff to leave, and not return (until very close to the end when I called hospice to tell them I'd rather my dad die alone, than with this particular RN, who I will add was fired for his treatment). I didn't understand that these people were working for US, giving me the authority over my dad's care, not them. I didn't realize that once my dad passed, there would be no calls, visits...nothing from that day forward. Our experience was both positive, and negative...positive for most of his nurses were compassionate, we were exhausted from his care for years, we desperately needed help, and relief. Negative for once we put him in a nursing home for a 5-day respite care (the one and only time), he was so mismanaged there that I found out he had been forced to stay in his wheelchair 24/7, (where the nurses could keep an eye on him), was given wrong medications, and came home with an UTI, which ultimately ended his life after 2 rounds of antibiotics. My advice to anyone is understand hospice Can help, however don't let your guard down just because you're exhausted...we, their caregivers Still know our patients best, and what their needs are. Don't be afraid to speak up on your loved one's behalf, demand certain nurses or staff be removed (you wouldn't return to a store if the owner was rude, etc), and never let your guard down, (you are still POA, and have final say in their care). Finally, understand once the patient has died, their care is done. The let down after dad's death was deafeningly quiet, one I was not prepared for. If I had known then what I know today, I would Still have used their help. However, I would have stayed in mental control, not give over the caregiver mentality to them just because they said they knew what to do, following their suggestions to a T, and living with guilt over mismanaged care. I would have researched all the companies at our disposal, (choosing one that offered patients respite care, and not placed into a nursing home where they were not familiar with the patient), I would have sent more staff packing when I wasn't satisfied with their care, and I would have been better prepared for after my loved one passed, (understanding their "job" is done, they have no financial reason to return for comfort, and knowing that makes it at least tolerable). Their care was in many ways angelic, however there were times that it felt more like an angels of death. My mother in law was recently diagnosed with Alzheimer's, we are to be her caregivers, you can bet your bottom dollar I will make sure she receives better care, when that time comes.

Problem is, the nature of fragility and age is to have multiple areas of vulnerability. So when Hospice is focused only on the designated disease, they are not trained, or perhaps not funded - to address anything else, other than supposedly providing emotional comfort. I worked in eldercare as a long time helper, but there is no coordination between Hospice and long time caregivers - Hospice is considered the leader in the care plan. Meanwhile other conditions show up and could be resolved in other ways besides medications, but Hospice is focused only on those, so I was surprised at how difficult it was to get them to help arrange other tests - like for a UTI, or to recommended added attention to prevent pressure sores, or even to help family members or carers learn how to transfer a patient without stress. Managing other conditions can ease the patient in ways not planned with the additional diagnosis, and relief from stress is a state that allows better improvement or even slow healing. Not doing this, leaves a patient in stress, which is then called delirium and medicated. Pain management is not as clear cut as professional implimenters are taught - some pain is transitory and is relieved after rest and stable, attentive care.

Hospice has been wonderful for me. My MIL has been on hospice for almost a year! Hospice people stop by at least 3 times a week and for MIL it's like extra visitors. Our entire experience has been positive. My husband died 4 1/2 years ago - awful cancer. Hospice helped him and I - a lot. If you are not happy with your hospice, just call another one. You have that choice at anytime.

It is very important to remember that there are for profit and not for profit Hospices. Not for profits recieve most of their funding through medicare and are very closely supervised. A patient ia admitted with a terminal disease or condition and that is the disease that hospice will manage. Patients are free to consult with professionals outside of the hospice team but Hospice will not pay for that treatment and can not afford to. It is in the interests of a not for profit to keep their patients alive not kill them. I have no experience of a for profit hospice but have heard the horror stories. If you are considering hospice for a loved one please do your research just as you would when selecting a nursing home or other care facility. I can only sympathise with those who have had bad hospice experiences.

I would love to share my comment. I have worked for a fantastic Hospice , but don't over rate the bad with the good. I lost my mother to Hospice . My first comment is no resentment because I put my mother on Hospice , she too was ok with it. She was not imminently dying or passing , no signs or symptoms while she remained in her same condition as basically you and I. Certainly she had re-occurring UTI'S with E-coli , ESBL , Strep once and once Delirium with a possibility of becoming Antibiotic Resistant but not yet , Yes , she had Debility also BUT not affecting her ability of What SHE wanted TO DO ! Hospice was called in for one reason reoccurring UTI'S with a possibility of becoming antibiotic Resistant NO OTHER REASON. Not imminently passing and WHY was she then put on for a CVA as her main issue in which she never had one with Urine retention which she had two times in almost four years, then changed to Debility as her # 1 Hospice issue , she loved her life as it was with her Debility , certainly you can state her debility but guaranteed this was far from ending her life as all her family knew this on any Hospice . No pain , uti's not making her sick , antibiotics still working , No intravenous Antibiotics to be used per Hospice but antibiotics , soon the Government is planning now to put a halt on this. As the Final Rule per The Federal Government states that the Patient must be put on Hospice for what the Hospice is called in for and as you yourself state that they should only be seeking Active Treatment for that Illness ONLY ! Which my mother needed no treatment as of yet , I am pretty sure the Final Rule per The Federal Government states to use a simple Tylenol or other means prior to MORPHINE ! So in my opinion as soon as she went on her first RESPITE caregiver stay within three and a half weeks after Hospice began they began to starve her , dehydrate her and a family member stated she was not allowed food to eat but no npo sign and you and I know medication that was not needed yet . Being I left the state for 2 and a half days which the Hospice thought I was to be gone 5 days . Would I have left the State if my mom was in any Dying stage or any problem at this point after 3 years and 7 months of care ? Behind my back this was done , knew nothing that my Mother was not fed by staff or any family member , what Hospice would do this ??? Should I be Angry I was not even told her Plan Of Care and apparently their Intentions ! My Mother comes home all restless and you know what I am speaking of , then I doing my normal thing not knowing she was not eating herself as she usually did I gave her food . Of course I had to feed her for two days then she was bouncing back but remained a little restless until I got her back to her normal self . Then I ask if she could go on another caregiver break a month later because I had an injection put in my spine because my back hurt for the first time ever since I had her . I go into this place that has a signed written contract between Hospice and the skilled nursing facility , of course we know also how coordinated their notes have to be. I see an NPO sign posted , yet again I am in the state this time and my mom just fed and medicated herself and I asked her if she wanted Tylenol for her bumpy Ambulance trip and she said yes. I said take that sign away , get rid of this , the Nurse states she can not , and the next morning I walk in I see them Medicating her with Morphine . Did I call 911 ? Yes I did . Then I said never mind . I then went to the Nurse station and screamed my head off and threatened them I demanded them to stop I will call the police , I will take her Home and if you do this again the service is over . Thought they stopped , thought she was getting a tray with food , but no. On September 22, 2013 about 6:30 pm. she was brought home by Ambulance and at 9:00 pm she starts having seizures and you know the rest . She was laid to Rest on October 13, 2013. So what do you feel happened here ???? No Pain , No disease running its course as supposed to but intentional pre-mediated Murder by DECEPTION . How do we trust any Hospice even if you have worked for a Super one like I did and maybe you also ??? We both know what did occur . Do Not EVER SAY HOSPICE CARE WILL NOT KILL YOUR LOVED ONE . I KNOW BETTER ! I have read the lies , the Deception for Medicare to read . They were caught and they DO KILL ! On Hospice with no pain , put her on too early and this does occur but who would think being you worked for Hospice and you know as well as I that HOSPICE can Kill. I have no reason to lie when I see notes Nursing Notes that state " I have just realized that not staff or any family member has fed this patient for the entirety of the stay ! Thank you . I will wait for a response from you.
Signed by : " Hear my Mothers Voice Through Me " , A book that is soon to be available by me.

Last 4 plus years one doctor wanted to put my mother in hospice. End of last month after been called a few times in a week by RN practotor, I had hospice come in and they sent the death box. Told me to give my mom morphine to help with pain when changing her bandage on her foot. One day she was having more pain so I gave her morphine twice that day. Next day she had no pain. Next day she was vomiting and coughing. Hospice telling me it was not from morphine.

But everything that was going on with my mom was side effects from morphine. Abnormally Low Blood Pressure, Excessive Sweating, Throwing Up, Widening of Blood Vessels, Difficulty Swallowing, Blocked Bowels with No Movement and many others. Wish I would of kept standing up and saying no to hospice.

Since we had never used Hospice we had no idea what to expect, we had heard wonderful things about the loving care given to both the ill person and their family so when it was time for hospice we were hopeful. As it turns out our experience with hospice was horrible. They first send in someone who sits down with the family, their job is to try and comfort and assure the family that their loved one will get the best care and that they are also there for the family. They handed us books on what happens during the dying process and my mon filled our multiple papers, there was no compassion for this woman who's husband of 65 years was dying in the next room, instead they completely overwhelmed her. We already had a hosptal bed but they wanted to bring in their own and disrupt my dad by moving him to their bed, we told them no but they kept badgering us, we won in the end and he was allowed to stay in the bed we had him in. I later found out they (Hospice) loses money if their equipment is not used. The nurses were no better, every time they came they were rushed and didn't have time to speak to us, they made us all feel that they didn't want to be there, they were abrupt with my mom and didn't spend any time with my dad at all, they were in and out in 10 minutes every time. The worst of all this was when he passed away, we called hospice as instructed, when the nurse showed up she stood at the foot of my Dad's bed and in a very uncaring tone said "yep he's dead" then she walked over and put her hand on his chest for a second before leaving the room, she walked right past my mom who was standing there in tears and said nothing to her. The nurse asked where the bathroom was and left to use it, I hate to say this but she caused such an odor that was soon spreading throughout the downstairs of the house, we were opening windows and doors trying to remove the smell. She thought nothing of it, she just sat at the table and started filling out paperwork. She then asked if we had any used coffee grounds, what, why do you need those? She said she needed them to dump the remaining morphine and adivan in. Since the only coffee maker was a Keurig we started going through the trash looking for used k cups so we could empty them for her. You would have thought when she saw us doing that she would have said don't worry about it, I can take the drugs and dispose of them but no she let us continue to hunt until we had what she felt was enough to use. She then sat there and dumped the drugs into the bags, threw them in the trash and left. No words of comfort, nothing. And all those who say Hospice remains there for the family after the death, my mom got nothing from them, not a call, not a comforing letter, nothing except a survey weeks after dad died. As far as Dad's care we didn't really care about what they did or didn't do while there because we were taking care of him, we were doing everything and we wanted to continue to take care of him, I was in constant contact with his Oncologist who even came to the house at one point because we couldn't move dad. I feel bad for my mom after all this though because I had heard wonderful things about Hospice and it was our hope that we would receive the same care and that maybe after dad's passing there may be something they could offer for our mom in the way of counselling or a support group that she could attend but they offered nothing. Once dad passed that was the end of our contact with Hospice other than the survey they sent. Would I call Hospice again, maybe but not until I fully investigate them and find out if they are a non profit or for profit organization because the one we had was a for profit one and it was clear that the only thing that mattered to them was how much money can we get out of this case. Even with all this we consider ourselves very fortunate, we had a very caring oncologist who was there for us throughout all we went through, we had a close ffamily friend who was the funeral director who was so caring when he came to remove my dad and most important we were able to take care of dad, we got to spend those last few weeks with him and he died knowing how much we loved him.

Hospice is a money making business period. It is non sense that it's a good thing for anyone except someone who asks for it one their own. My father suffocated to death his last day alive and my mother tried to get the hospice nurse on the phone the entire day but couldn't. He died a terrible death on that last day. That is the opposite of dying with dignity.

The hospice in Denver was wonderful. My 50 yo nephew was dying from cancer and his pain was off the charts. They immediately brought his pain down to 0 and acted so caring to his large family. They were even given a bedroom, for siblings arriving out of town. The nurses and staff could not have been more understanding and fielded many phone calls, from those of us out of state.