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Have you ever had a bad experience with Hospice? Should it be the only option?

Warfinge 2009/02/12 21:05:44
Hospice was there for my family when we needed them most
Hospice left me with  mixed feelings  ( Please elaborate)
Hospice was not a good experience for me ( Please elaborate)
I have no direct experience with Hospice but I believe....
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SOURCE- http://www.nhregister.com/articles/2008/11/28/opinion/doc492f...

Florence Schorske Wald has died at age 91. It is probably safe to say she was not a patient of the hospice system that she helped to bring to the United States. She decided to "die peacefully at home." Had she been treated by hospice, it is unlikely she would have made it to 91.

While Wald is dead, unfortunately, the philosophy she espoused lives on. Hospice has created a cult of death that has become pervasive in the medical community.

Many medical professionals are more interested in managing death than they are about treating a patient's illness. The most common inquiry I receive about my patients from hospital staff is: "What is this patient's code status? Shouldn't this patient be comfort measures only?"

I went to medical school to treat illness and help patients lead better and longer lives. My goal in treating critically ill patients is to get them better, not hasten their demise. While it is not always possible to cure an illness, we have an obligation to offer reasonable therapy.

The most infuriating conversations I ever had were with doctors treating my father while he was suffering from cancer. Many were more interested in offering palliative care than in offering treatment. He wanted and needed treatment.

Hospice has become a sacred cow and it is hard to find anyone who is willing to openly criticize this approach to end-of-life care. Wald's obituary exemplifies this. The Register managed to neglect her support for physician-assisted suicide. The following quote was in The Washington Post: "There are cases in which either the pain or the debilitation the patient is experiencing is more than can be borne, whether it be economically, physically, emotionally or socially," she (Wald) said. "For this reason, I feel a range of options should be available to the patient, and this should include assisted suicide."

While hospice likes everyone to know they are in favor of death with dignity, it is worth taking a look at what they are against: intravenous hydration, "artificial" nutrition and antibiotics.

It is easy to empathize with a cancer patient who has chosen not to receive chemotherapy. Often, they can make their own choice for palliative care. Unfortunately, when hospice care is provided for a dementia patient, they cannot choose. It is inflicted on them.

Hospice clearly does a lot of good work. It has helped ease the suffering for thousands of terminally ill patients and their families. Sadly, hospice has also become abortion for the elderly.

Frank J. Mongillo III, M.D.

New Haven

SOURCE- http://www.nhregister.com/articles/2008/11/28/opinion/doc492f...
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  • Mehuldera 2009/02/12 21:21:53
    Hospice was there for my family when we needed them most
    Mehuldera
    +5
    Had Hospice with both my parents and had mixed emotions. Dad had cancer of the pancreas and only lived 5 weeks after diagnosis. Was with hospice only 8 days and I had a problem getting them to agree to the morphine pump util I put my foot down. They said it was too early but he passed away 3 days later so it obviopusly was NOT too early. He suffered needlessly for 3 days. With Mom, who also had cancer but died from heart failure not the cancer, they were fantastic. She was with them for 2 months. My brother & I are both retired so we took turns staying a month at a time. He stayed the first month and I KNOW he would never have made it without them. I'm a nurse and even I had a hard time. I was with her the last month and it was really rough even for me and I worked with the terminally ill all the time,but our nurse Melnda was WONDERFUL. Just a phone call away 24/7. They had an MD who's only patients were hospice and he did a wonderful job of keepng Mom as comfortable as possible until the end. Any time we needed a med change no matter what time of day he was there for us. TYhey opassed away 12 years apart so hospice made a lot of progress in that time plus we had another company who handle Mom.

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  • Maggie Newsday 2012/05/25 19:07:17
    Hospice was not a good experience for me ( Please elaborate)
    Maggie Newsday
    +1
    Hospice is currently drugging my grandmother so that she does not wake up during the day. Prior to hospice, she talked, ate, watched tv, walked a little in the yard. Now all she does is sit in the recliner that they made us get. The medicine has made her lose cognitive functions and she falls quite frequently because of it now, and then they reported the family to APS for elder abuse bc of the bruises caused by the medicine induced falls.
  • Warfinge Maggie ... 2012/06/25 12:49:46
    Warfinge
    If only I could openly talk about what I know now after all this time after starting this thread. Practices differ from Hospice crew to Hospice crew. Some do the job keeping people comfortable while they go through the last stages of a terminal illness but MOST Hospice agents have an agenda to expedite that passing.
  • Mary Mari 2012/02/14 20:40:41
    Hospice was not a good experience for me ( Please elaborate)
    Mary Mari
    +1
    Hospice was not a good experience. They sedated my father and kept him that way until he died. They starved my father to death that is what killed him! He was sedated calling out for water and for me to stop them and I could do nothing. This has haunted me now for months. My father was a world war II Ranger and he should have died with dignity. This is not something you want and whoever is sedating you are just another Jack kevorkian. If you sedated me and stopped feeding me I would die too! Your killers nothing more.
  • Mary Mari Mary Mari 2012/02/14 21:32:26
    Mary Mari
    +2
    The pro life Catholic Church did this!! You kill live humans!!
  • Warfinge Mary Mari 2012/09/15 12:04:28
    Warfinge
    wut? that makes no sense
  • Frank 2010/07/23 22:40:43
    Hospice was not a good experience for me ( Please elaborate)
    Frank
    +4
    Thou shall not kill. And then, what about "Do not harm." The very fundamental of conducting and maintaining a good life as constructed through attending to the responsibilities required by good spirit and the ten commandments, is utterly betrayed and diametrically opposed by the evil, half- baked, un- Christian psychology of the hospices and associated health-care workers including physicians, a psychology which in "their" minds permits them the authority to murder people scot-free. "They" have a propensity for tightly and defensively cooking the books in order to create the appearance that "they" are not causing death and hastening death while knowing full-well administering morphine et al does exactly that and very predictably so, producing respiratory arrest. To not be able to breath produces one of the strongest inner-consciousness eliciting anquishes the human brain can experience, all is being lost. The Nazi's and "their mindset" were in la la land when they perceived satisfaction when murdering people including the particularly vulnerable, a "mindset'" of 60-70 odd years ago and still thrusting its authoritarian, backed up by facility security if necessary on occasion, bad spirt into societies and into the experience of individual familes - This is the produ...
    Thou shall not kill. And then, what about "Do not harm." The very fundamental of conducting and maintaining a good life as constructed through attending to the responsibilities required by good spirit and the ten commandments, is utterly betrayed and diametrically opposed by the evil, half- baked, un- Christian psychology of the hospices and associated health-care workers including physicians, a psychology which in "their" minds permits them the authority to murder people scot-free. "They" have a propensity for tightly and defensively cooking the books in order to create the appearance that "they" are not causing death and hastening death while knowing full-well administering morphine et al does exactly that and very predictably so, producing respiratory arrest. To not be able to breath produces one of the strongest inner-consciousness eliciting anquishes the human brain can experience, all is being lost. The Nazi's and "their mindset" were in la la land when they perceived satisfaction when murdering people including the particularly vulnerable, a "mindset'" of 60-70 odd years ago and still thrusting its authoritarian, backed up by facility security if necessary on occasion, bad spirt into societies and into the experience of individual familes - This is the product of contemporary medicine backed up by its overbearing albeit very adept un- Christian psychology. The plug is being pulled on the most clearly understood goodness of, Thou shall not kill, by of all people, the health care oligarchy.
    (more)
  • Warfinge Frank 2010/07/24 21:20:08
    Warfinge
    New issues have come to light for me since I started this poll that make me believe we are all subject to the judgment of the medical system in general whether or not we are living a life worth living. "Useless Eaters" and "Useful Idiots" are two quotes that come to mind. I watched a woman who was cared for by Hospice until she died. She died not from the Alzheimer's disease she was suffering from but from dehydration because her family decided to stop giving food and water. She had a feeding tube but the family was impatient and decided to stop her life so that the money could be managed better. She was given liquid morphine while she begged for water. It didn't take but 9 days. God help us all.
  • margaret 2010/03/26 02:04:03
    Hospice was not a good experience for me ( Please elaborate)
    margaret
    +3
    i had a brother who went into the hospital with breathing problems, he had lung cancer. within a week he was delerious, i believe it was from the morphine. we were told that we had to have hospice to be able to bring him home. they put in a morphine pump and let him come home. they tried to make us deprive him of water or food, but if he was thirsty we gave him water. he died in one night. i know in my heart it was from the morphine. we begged them to change it to something differant because we felt it was hampering his breathing. they said it wouldnt effect his breathing. i know they hastened his death. i miss him, and i swear that hospice will never be near any of my family again.
  • Warfinge margaret 2010/03/26 15:24:40
    Warfinge
    Morphine is actually better in proper dosages than some of the pain patches they want you to use. I recently watched a woman with breast cancer die of kidney failure within a week of starting Fentanyl patches. I could tell (because I was her caregiver) that her urine was showing signs of a serious reaction to something yet the hospice nurse ignored me until it was too late.
    Personally, I think the minute a doctor says someone has 6 months or less to live, Hospice makes it as much less as they possibly can. I suspect this will get worse as the Medicare crunch gets tighter.
  • susan 2009/09/28 09:21:47
    Hospice was not a good experience for me ( Please elaborate)
    susan
    +4
    My husband died in a hospice.
    I am convinced that hospice has created a niche for itself by getting people to believe that everyone who is dying is agitated and anguished and that all family members are emotional basketcases.
    Bullshit!!
    These people are about as enlighted as lamp posts.
    They wanted to snow him out with heavy-duty sedatives because "they" are agitated. He showed no signs of that.
    Me- If I need any care at the end, I want to die at home with Home Health Care, NOT hospice!
  • Warfinge susan 2009/10/13 17:02:06
    Warfinge
    I have seen this attitude as well. The game here is to attack healthy organs and undermine a patients ability to prolong their "service". Certain pain patches are murder on kidneys, other meds for other organs etc.
  • vvrelover 2009/03/25 04:35:12
    I have no direct experience with Hospice but I believe....
    vvrelover
    I have grandparents that are in a great nursing home, but they wish to have and be in there own home, which is basically impossible with 88 year old woman with an amputated leg in a wheel chair and 90 year old grandfather that has bad heart, deminsia, etc... The staff there love them and call them mom and pops. If any of them should ever suffer from terminal cancer or what have you I would hope that the love that is showed to them now would be showed to them then. I have faith in the people who care for them as we are very close to the facility personally and we visit all the time.
  • emily 2009/02/22 05:24:45
    Hospice left me with mixed feelings ( Please elaborate)
    emily
    +1
    My mother died recently of cancer. In a way I liked hospice because she was having so much trouble geting pain meds from her pcp. At least hospice helped her get relief from pain. I feel like they wanted her to die because she was old and poor and medicare wasn't paying the doctors enough to make it worth their while. The nurses and support staff were all good people and I appreciated their help.
  • Warfinge emily 2009/02/22 13:22:53
    Warfinge
    +2
    II think hospice gets the same money from Medicare no matter how long someone lives so it wouldn't be unreasonable from a business standpoint to say that it doesn't matter to hospice how much money a patient has but to be honest, I feel like hospice has a mandate to expedite or hasten the end of all patients in their care. They get a flat rate of pay so the shorter the life, the bigger the pay-off after they start with a patient.
  • Marie 2009/02/14 21:31:00
    Hospice was there for my family when we needed them most
    Marie
    +1
    My grandaughter is a Hospice nurse, and there is no more loving and caring person
  • Warfinge Marie 2009/02/14 21:58:22
    Warfinge
    I am sure she is. I know a lot of Hospice Volunteers. Most all great people. I am not questioning everyone's character that works for and with Hospice. I am really after a large discussion with a lot of shared experiences. Doesn't matter to me if it's positive or negative experiences, I just want a feel for other peoples experiences outside of my immediate area.
  • 4bent1 2009/02/14 13:32:41
    Hospice was there for my family when we needed them most
    4bent1
    +1
    I've worked in medicine for over 20 years, thank god society is finally accepting the reality that we will ALL die. Doctors are finally realizing that many people view quality of life over quantity of life. There is HUGE money to be made in keeping people alive, for every cancer patient there is a reported $500,000 in profit to be made. I've seen hundreds of people kept alive by the work of the physician, it was only denying the inevitable, and torture for the patient and family. Hospice and Palliative Care allow the patient the dignity of as comfortable an end as possible. Doctors are taught to sustain life, without thought to the pain and discomfort it causes. This should be every persons right and choice to make when they have the truth about their condition. If they chose all and every treatment available, that is their decision. While you can find negative stories in anything, the overwhelming experience I've had with Hospice & Palliative Care is tremendously positive.
  • Warfinge 4bent1 2012/09/15 12:11:47
    Warfinge
    "Doctors are taught to sustain life, without thought to the pain and discomfort it causes."
    Nope. Does not wash. Doctors also deal with quality of life "as they see it". In cooperation with the family, they have been known toexpeditee the passing of a terminal patient as I have witnessed. Palliativee" care is a code word for "Conserving resources for the living while not wasting it on the dying" I have never experienced what you describe. ever. I am an old timer too.
  • Constitutionalist/Conservat... 2009/02/13 03:05:32
  • Marie Constit... 2009/02/14 21:35:56
    Marie
    +1
    God gave us the intellegence to help those suffering agonizing deaths. I am far from liberal, but have watched pain, even Simon helped Christ carry his cross.
  • Warfinge Marie 2009/02/14 21:53:25
    Warfinge
    When someone is consenting and willing, I see no problem. Who wants to suffer endlessly with no hope of relief except death? I am more interested in people's actual experiences than the goal of hospice. Such as a family decides their mother may not have a feeding tube and the Doctor says to no longer attempt to feed the patient because of aspiration hazard. The patient is advance Alzheimer's and has a poor swallow efficiency yet is ambulatory and relatively active. Needless to say with no nourishment, life expectancy is within Hospice's guidelines. Let's assume there was no living will for sake of discussion. As a caregiver, I am reduced to changing diapers and have been warned to not allow the patient food or drink for fear of aspiration of even clean water. Glycerin swabs only. Is this the original mandate of Hospice?
  • Mehuldera 2009/02/12 21:21:53
    Hospice was there for my family when we needed them most
    Mehuldera
    +5
    Had Hospice with both my parents and had mixed emotions. Dad had cancer of the pancreas and only lived 5 weeks after diagnosis. Was with hospice only 8 days and I had a problem getting them to agree to the morphine pump util I put my foot down. They said it was too early but he passed away 3 days later so it obviopusly was NOT too early. He suffered needlessly for 3 days. With Mom, who also had cancer but died from heart failure not the cancer, they were fantastic. She was with them for 2 months. My brother & I are both retired so we took turns staying a month at a time. He stayed the first month and I KNOW he would never have made it without them. I'm a nurse and even I had a hard time. I was with her the last month and it was really rough even for me and I worked with the terminally ill all the time,but our nurse Melnda was WONDERFUL. Just a phone call away 24/7. They had an MD who's only patients were hospice and he did a wonderful job of keepng Mom as comfortable as possible until the end. Any time we needed a med change no matter what time of day he was there for us. TYhey opassed away 12 years apart so hospice made a lot of progress in that time plus we had another company who handle Mom.
  • Mehuldera Mehuldera 2009/02/12 21:44:17
    Mehuldera
    +4
    Having read the article now, (wasn't really paying attention to the link in the beginning I guss) I will add another note. Both of my parents has living wills which their MD & both my brother & I helped them with..me for the medical explanations in terms they understood & my brother to explain the legal implications. They were ADAMANT that they did not want to have their lives prolonged by artificial means. We alk watched my brother suffer needlesly for over a year before he passed away at 30. Dad was told he was terminal in the next breath after he was given the diagnosis and HE made the decision to call in hospice so that Mom could have some support when I could not be there.(I lived 3 hours away and worked full time) He was 74 years old and had seen his father & nephew die horrible deaths from cancer.

    Mom who was 86, lived a little over a year after her diagnosis of sarcoma and had been pronounced cancer free just a month before she started to spiral down hill from heart diserase. We had placed her in an assisted living situation after her cancer treatments were completed. By then both my brother and I lived very far away and she refused to come to live with either of us but after 7 months we realized that she was very unhappy there even though she liked the people and the arr...
    '""'
    Having read the article now, (wasn't really paying attention to the link in the beginning I guss) I will add another note. Both of my parents has living wills which their MD & both my brother & I helped them with..me for the medical explanations in terms they understood & my brother to explain the legal implications. They were ADAMANT that they did not want to have their lives prolonged by artificial means. We alk watched my brother suffer needlesly for over a year before he passed away at 30. Dad was told he was terminal in the next breath after he was given the diagnosis and HE made the decision to call in hospice so that Mom could have some support when I could not be there.(I lived 3 hours away and worked full time) He was 74 years old and had seen his father & nephew die horrible deaths from cancer.

    Mom who was 86, lived a little over a year after her diagnosis of sarcoma and had been pronounced cancer free just a month before she started to spiral down hill from heart diserase. We had placed her in an assisted living situation after her cancer treatments were completed. By then both my brother and I lived very far away and she refused to come to live with either of us but after 7 months we realized that she was very unhappy there even though she liked the people and the arrangement, she wanted to be back in her own home so we moved her back home and cared for her there.
    I really don't see Hospice as "abortion for the elderly" it is letting nature take its course. Hospice doesn't hasten death it makes death less painful. If a hospic is hastening death then they need to be reported and another provider needs to be found.Why should people have to suffer years and years taking medications that have in some case very unpleasant side effects.
    (more)
  • Warfinge Mehuldera 2009/02/12 22:01:03
    Warfinge
    +2
    I am a caregiver in a longterm care facility. I have over time been really disillusioned with my local hospice providers. I believe in the mission but in my experience, Hospice is used more and more often on demented patients. Patients who are relatively healthy other than dementia or Alzheimer's Disease. There are things that are done that undermine organ health which accelerates the end. That is not the mission. I wanted a poll to see if this was common or localized. It's a big topic in the UK for debate. No so much here.
  • Mehuldera Warfinge 2009/02/12 22:30:59
    Mehuldera
    +3
    I'm in the US and worked primarily in acute care and on the geriatric units for the 20 last years of my practice. Haven't really seen that here. I've worked in 5 different states but most of my hospice experience has been in Texas & New York. Haven't seen what you refer to here. Most of our hospice patients are terminal cancer, lung disease, heart disease and the like. Also, here a patient must be considered within 6-12 months from death to be accepted by the hospice in the states that I have had dealings with them.
  • Constit... Mehuldera 2009/02/15 00:19:05
  • Mehuldera Constit... 2009/02/15 01:11:16
    Mehuldera
    +2
    I can understand how you would feel that way given those circumstances. As I said both of my parents were in severe pain and as an RN myself, I knew what dosage of the morphine they each should be receiving so could oversee the administration myself. It is not the right choice for all patients but I think definitely the correct choice for my parents. I'm not sure if I would have felt the same if they had had any sort of dementia. Our local hospice would not accept an "otherwise healthy" individual. There are very strict criteria for the two companies that I have dealt with that I was happy with. My only negative aspect was that when my father was on hospice, they was not medicate him ENOUGH. He suffered needlessly for 3 days after he was unable to swallow the morphine tablets until I finanlly got to talk to his MD personally and get the morphine pump ordered. He was not receiveing a very large dosage of morphine (it was less than 10 milligamms an hour...which is a very small ose for a dying patient....nor was it IV morphine it was infused into what little body fat he had left on his abdomen average dose of morphine is 20 milligrams orally every 15 minutes as needed for terminal patients.My experience is that most patients ask for it about every 30 minutes) at the time of his death but he appeared to be comfortable.
  • Warfinge Mehuldera 2012/09/15 12:13:51
    Warfinge
    Thank you for your opinion.

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