>She was told by TWO hospice providers that they would not take her unless she agreed to stop the feeding by feeding tube. She has months to live. Agreeing to their terms, which violate federal guidelines, would be a premature death sentence.<
These Hospice agencies need to be reported ASAP!
I have read through this entire post and now I want to share my experience as a Hospice nurse of 5 yrs and as a layman who has had family on Hospice.
First of all I have to address this post. If what you say is true, then I want you to report these two hospices immediately to the states A.G. office for investigation. I have had many pts on feeding tubes and they keep the tubes until they pass. Hospice Medicare benefits cover a person to get a feeding tube placed when they can no longer swallow or if its too painful to swallow.
Hospice is not a death sentence. A pt chooses to seek or refuse treatment as they see fit. If the person has been on hospice and decides they want to seek treatment not covered under Hospice, then you simply discharge them. It takes 2 signatures on two forms.
I have NEVER, nor have I ever seen anyone else, withhold food or water or anything else for that matter, from ANY pt at anytime. Now, when a pts body enters the dying process, they’re entire body begins to shut down. Blood flow decreases to extremities, it is concentrated to the heart and lungs, which is the natural dying process. If you force fluids, via orally or intravenously at this point, the cells will not process this fluid and it will fill up the interstitial spaces usually starting in the face and then the rest of the body and then the lungs, so essentially the pt can in fact die from drowning, which I watched my father in law do for days and it still haunts me. Also there isn’t adequate blood flow to the kidneys in order for them to properly filter fluid and that is why you begin to see very little urine, if any. If you try to feed a pt at this time, their digestive system will not digest it or digest it fully because there is not enough blood flow to the digestive tract and it began to slow down or stop all together, so it just sits in the stomach or one of the intestines and is very painful to the pt. Even putting tube feeding into a tube it just sits in the stomach and when you check residual all of the feeding will still be there, unless of course it backed into the lungs, which will most likely cause bacterial pneumonia. I have seen a pt who was continually fed when they were unable to digest it literally throw up there stool. I have also had to digitally remove stool from pts for the same reason, and is quite painful.
I can also tell you from my experience as a nurse, that having family members who won’t give mama morphine because they don’t want her sleeping all the time and they also want to be able to talk to mama, absolutely can make me lose my religion. They will watch their love one suffer in agony so they can “talk” to them. It is so incredibly selfish! Having said all this, I left Hospice nursing this Jan. and may not go back to nursing at all because of the stress. Nurses, who are worth 2cents, will get attached to their pts and families and that is what I did, probably too attached. I internalized the suffering the family was going through. If I had a pt in the slightest bit of pain I took it personally. Sometimes no matter what you do, or what you give a pt., because you cannot OD them, they still have pain. I began to blame myself for it and I would feel like I was failing my pt somehow. With the deaths of my inlaws within a yr of each other and I lost 4 pts in December of last yr within 48 hrs, I reached my limit. I definitely have reached burnout.
As far as some of these articles dealing with private Hospice companies and enrollment under debility and failure to thrive, when I got out a few months ago Medicare was getting rid of the debility dx because of rampant abuse due to its vague guidelines. And I would argue that failure to thrive shouldn’t be a dx either but Medicare doesn’t care what I think. However, whenever I have had a pt with adult failure to thrive, its because their bmi is very low and I would order periactin or megace, or even steroids to increase their appetite, which usually works. I would monitor their wt and bmi and when it came up above Hospice guidelines, I would discharge them.
I do however, have a HUGE problem with Hospice companies needing marketers. Them and the DON’s in charge of making that money will try to get you to admit livestock if they think they can get away with it. But if you are a nurse who takes your license seriously, then you don’t do it. Because when Medicare comes knocking and they will, they are not going after that Doc who signed those order to admit, they are not going after that DON or marketer either, cause they gonna hang you out to dry. The nurse is the one who admitted, we just went with what she said. Good, smart nurses won’t admit a pt who isn’t appropriate. That’s why my last boss didn’t like me too much. She would try and bully me into admitting pts that weren’t appropriate and I wouldn’t do it. I worked hard for that license and that’s my reputation on the line. Not all nurses are very bright, though. Some only care about kissing the bosses ass.
Also the statistic above that states 20% probably don’t qualify I disagree with. When I started my last job I went through all my pts histories, talked to their families and did thorough assessments and name to the conclusion that well over half of those pts were not appropriate. In some places I’ve worked I would even say 80% not appropriate to 20% qualifying.
I also like everyone else see the writing on the wall and do fear that the death panels could very well start in Hospice. I can see where this new health care law could end up with forced Hospice because socialist are evil, murdering people. And I refuse to have a part in it if it ever comes about.
I would just like to end my lengthy post by saying that nothing I have said is intended to discredit anything anyone has said here, or any of their experiences. There are very good caring people in this world and vary a moral people who only care about earning a paycheck. And I would never deny anyone’s experiences because I know how people can be.
When I started my last job I went through all my pts histories, talked to their families and did thorough assessments and name to the conclusion that well over half of those pts were not appropriate. In some places I’ve worked I would even say 80% not appropriate to 20% qualifying. I also like everyone else see the writing on the wall and do fear that the death panels could very well start in Hospice. I can see where this new health care law could end up with forced Hospice because socialist are evil, murdering people. And I refuse to have a part in it if it ever comes about.
Of those who were inappropriate admissions (as much as 80%?) how many of them subsequently died while under hospice care?
From a Catholic perspective, some people who are terminally sedated never get the chance to make things right with God prior to passing from this mortal coil. And therefore fail to avail themselves of the Sacrament of Confession and Viaticum. And therefore may be dying outside of a state of Grace.
And that is far worse than the temporal sufferings they are enduring at the end of their life.
That was in the Pittsburgh region. I've had patients or family members who were told the same thing here in the Johnstown area. The "catholic" physician who treated my friend Fr. Gerard told me that IVs were "against hospice policy" as they "only prolonged the process."
When my father in law was admitted to hospice care, their default order was no assisted hydration or nutrition. No one in our family told them that, and we had to specifically countermand that order.
When my mother in law was finally admitted to the in patient hospice unit in the last 48 hours of her life, her IV came with her from home. The hospice nurse made my wife feel guilty for requesting it. When my wife asked how often this nurse dealt with IVs, the nurse rolled her eyes and huffed, "We never do IVs here!"
Its going on every day across the country.
Good job, good post! Thank you.
For whatever it's worth, Lil Flower, my mother is an additional example of a case where a hospice said they could not maintain a feeding tube. You say the hospice should immediately be reported. That's quite interesting, and I sure wish I'd known I could do that. I've been pro-life for well over two decades, but my focus has always been on the abortion issue, not end-of-life issues, and your post and that of Dr. Kopp have helped me a great deal in understanding things that I knew were wrong years ago but which I could not effectively argue against from a legal perspective.
I'm omitting some key details here for personal reasons, but am including what is legally and ethically relevant for making end-of-life decisions.
My mother died in her mid-sixties. Her history was that she had been a three-pack-per-day smoker for most of her life, resulting in COPD. She reported having completely stopped smoking a few years before her death, but years of heavy smoking had already done permanent damage. Some of that damage included severe low blood pressure causing weakness in her legs and arms that prevented her from walking, and eventually got so bad that she could no longer grip objects with her hands. The cause of this weakness was misdiagnosed and not recognized as being due to low blood pressure for an extended period, and that resulted in inadequate food and water since she couldn't eat by herself, leading to a declining health spiral with repeated emergency room visits due to fainting and other loss of consciousness until the COPD was finally properly diagnosed. Because she could not eat properly due to lack of ability to handle silverware at home, she suffered from extreme weight loss over a period of perhaps half a year, eventually went into a more serious coma, and was transported to an emergency room where she was expected to die. I was called from halfway across the country to participate in a family decision on withdrawing life support; when I discovered that meant withholding food and water, I absolutely refused, and fortunately she was in the intensive care unit of a Roman Catholic hospital where the staff understood my objections and called in additional staff members to try to deal with the situation.
During the argument over whether to remove her feeding tube, my mother continued to receive necessary nutrition and hydration to the point that she unexpectedly recovered, became fully conscious, and became very upset by what was happening. She ended up living several more weeks, but knew she'd probably die in the relatively near future, so rather than dying in a hospital, she wanted to go to a nursing home associated with her denomination, which was once evangelical but was quickly lapsing into liberalism.
The end result is she was placed into a hospice associated with the nursing home rather than the nursing home itself, lapsed into unconsciousness over the weekend when she couldn't eat or drink enough to sustain herself, and I discovered to my horror that she could not be put back on the feeding tube because of the institution's rules on the matter which, among other things, meant she couldn't be transferred to the part of the nursing home where feeding tubes could be restored.
I could do nothing under the circumstances because of documents my mother had signed much earlier in her living will which, once she woke up out of her coma, she clearly and repeatedly contradicted verbally in my presence and that of several witnesses. Once she lapsed back into unconsciousness, I could do nothing because of the living will.
I sure wish I had known at the time that I could report the hospice for what happened with her feeding tube. I have absolutely no doubt in my mind that my mother agreed to leave the hospital thinking she could be put back on a feeding tube if necessary, but once she lapsed into unconsciousness because she couldn't control her hands well enough to eat and drink by mouth, there was nothing more I could do.
Bottom line: people who say these things don't happen are simply wrong. Get your legal documents governing medical care written by a lawyer who is pro-life and understands the loopholes. If you can, choose a doctor, a hospital, and a nursing home that share your values. If you can't, make absolutely certain you have someone to advocate for you and make decisions on your behalf who understands what you want, and has the legal authority to follow your wishes.
The consequences of failure in situations like this could be fatal.