Time for hospice and Im really scared
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Actually being kicked out of hospice is a good thing! It occasionally happens and doctors are happy when it happens to their patients. My husband is a hospice and palliative doc and said the average enrollment is less than five days, meaning most people enroll far too late. You Teri are the exception and personally, I think that is great news.
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Teri,
What a strange turn of events. I am really surprised. There are people who have been in hospice care for years and likewise some who have been in and out of care for years. Art Buchwald, the columnist, was famously in hospice care for quite a long time and wrote about it.
I thought the "six months" guideline was just that, a guideline, and not to be followed so strictly. I've been under the impression that hospice and palliative care were really beginning to blend together, with relaxed attitudes about any sort of time frames. Not all hospice organizations are created equal, though. Might there be another in your area?
Tina
P.S. The neighborhood herd of deer ran through the woods past our fence this morning. Of the twelve or so critters, one looked suspiciously goatlike, but I can't be sure. They were moving too fast. I'll continue to keep an eye out.
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Teri, can they really kick someone out for not dying fast enough???? I was also under the impression that 6 months is a GUIDELINE, there will be some who die faster, some slower. What does it take for them to take you back? Is there another hospice in your area? And I was also wondering, what does hospice provide that you cannot arrange for yourself? I was under the impression that they could help find people to help you do things you cannot do, like finding folks to get groceries, cook, laundry, etc., but you may also be able to use a home care agency - I had a woman coming once a week for a while to help with kitchen stuff, but quit using her when I felt better. The real issue is $$$$$. Hospice has to pay for your meds and services whereas if you are not on hospice, your regular health insurance has to pay for meds and doctors, etc. I suspect the money issue is a big factor in their decision to cut you loose, but that is my cynical side coming out.
In any case, I hope your new onc is more helpful, and I can't remember if you have a palliative care doc, but if not, that could be helpful. I had the hospice discussion with my palliative care/PCP last visit, and after thinking about it for a long while, wondered just what hospice could actually do for me that I or my family cannot do .... and I also have an interventional pain doc on my team, so the 3 of them are really a good team altogether.
No sightings of Deuce, but the neighbor's dog has decided she likes to come visit despite them having an invisible fence. If there WERE any goats around, she would have them chased off by now. Will keep looking ....
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My prayers remain with you. I hope you find the support that you need both physically and emotionally.
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Teri, Just when you think you've heard everything, life throws you a big curveball! Hospice must think there's another option out there for you-- I hope your doc agrees next week! Have a relaxing, peaceful and pain free weekend! Sending positive thoughts to you for an encouraging appointment. ((((hugs))))
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I am also having difficulty wrapping my head around getting thrown out of hospice because you are apparently not dying quickly enough to satisfy them".???? Um, what? I'm sure you could win this on an appeal if they have an appeals process, don't you? You really don't need this aggravation from them. That's for sure. I so hope that the new med. onc. will be so helpful that you won't care.
I guess you saw that Chrissy is so lucky that Russel Crowe is actually filming in her little town!! Steelrose and I are so jealous we are both so envious that we are a sickening shade of green! And it's not due to cancer or drugs! Yes, Rose, it's those bad boys.....yes indeed! Lol.
Meanwhile, near as we can figure, Deuce is running madly thru Qatar in full Arab dress. We managed to get a photo of him awhile back. He is scary indeed, In the pic he appears to be about 7 feet tall and looks quite truculent as well. I wouldn't cross him. I also heard that Homeland Security would like to talk to him.
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Good morning Teri,
I heard that Deuce was training with a yoga master in the Colorado Rockies. He is working on some of those inverted poses .....
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Teri,
Let's just say you graduated from Hospice! Not the worst thing to still be here 6 months later! I'm sure happy you are. Love the Deuce as yogi pic! Wishing you a beautiful day.
Laura
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I like what Laura wrote.. "you graduated!" Nice positive spin on events. I guess you're going to need to wait on another exit plan. Good luck on your up coming appointment. (((((HUGS)))))
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That made me smile to read that you flunked out of hospice. Being kicked out for being stable is pretty good news! Hopefully the new doc can offer treatment that will keep you stable and pain free!
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Hi Teri! Hope you are feeling good this morning and as pain free as possible.
Love n hugs. Chrissy
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Teri,
I thought it was a year and if you were stable they would step back and then return when you need them. Even that seems to insane, but better than 6 months. Things with disease can turn on a dime, they must realize that. Ditto what Chrissy said , what can your doc do to assist?
Gentle hugs
Nel
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I am as baffled as everyone else, but several articles I have read lately [Nytimes, BostonGlobe] indicate that hospice has become a big profit maker for for-profit hospice "companies." The world of hospice has changed, and is no longer volunteers striving to make a difference. Did find these guidelines on the Federal government website: http://www.medicare.gov/what-medicare-covers/part...
I really hope that you are getting whatever breathing and pain relief you need.
*susan*
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I have said it many times before hospice is not what its cracked up to be. They want everyone to hurry up and die and for the caregivers to say how wonderful you are hospice. Yes, if someone is on deaths door they are wonderful. But don't expect a lot more then a ton of drugs, a hospital bed and a portable toilet.
Donna
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Teri,
I was so sorry to hear that you were discharged from hospice care. You might want to consider the possibility of contacting, or of having someone contact on your behalf, the Oregon Hospice Association (888-229-2104), an organization that is designed in part to insure that consumers get the most out of their hospice benefit. Generally speaking, Medicare and private insurers (since they typically follow the Medicare model but may vary in some ways) allow for someone to be admitted to hospice care if that person is considered to have a terminal diagnosis that, if it runs its expected course, will end in death within 6 months. That does not mean that hospice care is limited to 6 months (or two 90-day certification periods, if we are talking strictly about Medicare), because a person can be recertified for hospice care for an unlimited number of 60 day periods (Medicare again). However, that person has to demonstrate signs of an ongoing decline; if that person is considered to have "stabilized," (and not just for a few days) then the person is supposed to be discharged, given assistance with developing alternate care plans prior to discharge, and assured that re-admission can be arranged if a significant change in condition occurs. Even if someone has metastatic disease, if it does not appear that there has been decline and a reasonable expectation of ongoing decline within the next 60/90 day period, then that person does not qualify for ongoing hospice care.
One of the reasons that Medicare has really pushed for admission/recertification/discharge regulations to be followed is the amount of fraud that has occurred in hospice care. Without going into lots of detail, this has happened in part because people with chronic illnesses that were potentially life limiting were allowed to receive hospice care inappropriately and for very long periods (especially in some parts of the country where resources are scarce) and in part because many "for profit" (and also non-profit) hospice programs were allowing patients to remain in hospice care for excessive periods, sometimes years, in order to boost their profits. So now hospice organizations are under increased pressure to assess the level of decline and to justify ongoing care, especially after 6 months. Interestingly, this requires both the hospice team to be really competent in the areas of assessment and documentation and the hospice patient to be extremely forthright in what kinds of symptoms, decline, and effect on quality of life they are experiencing. One might think that every hospice RN is certified in hospice care, but that is not the case at all, and many well-meaning, caring RNs simply do not have the skills needed to do a thorough assessment on a consistent basis and therefore justify recertification (which nowadays requires a face to face evaluation by a doctor or nurse practitioner before the end of 6 months and then every 60 days). And many hospice patients believe that it should be obvious that they are declining and do not realize the importance of keeping a journal or log of all their symptoms and what decline looks and feels like for them.
Just like there is a wide range of competence, professionalism, and care provided by our medical oncologists, there is a wide range of quality across hospice providers. For some providers the focus is limited to providing the minimum standard of care (and some don't even hit the minimum standard), but there are many providers who offer care that is professional, highly competent and caring, with great regard for a person's dignity and quality of life. I've seen firsthand how that type of care makes a tremendous, positive difference in patients' and caregivers' lives.
Teri, I just want to add at this point that I hope you are receiving the care that you need and that, if you are unable to be your own best advocate--whether in certain situations, or for short periods of time, or for longer periods--that you have someone you trust who can advocate for you. I hope today you are comfortable and that you have had moments of joy and peace to lift your spirits and heart.
Brenda
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Hi Teri! Checking in from over yonder, I was going to give you encouragement for your Dr appt today, then I saw that you flunked hospice - congrats! OMG, dumb hospice and dumber doctors. Sending you a big gentle hug and patience for dealing with these boneheads, as my teenager would call them.
Check out this fab royal goat - maybe Deuce is now part of the Welsh military, LOL!
On a trip to Cardiff (Wales) in 2010 I encountered the stuffed Qatar goat Billy of the Royal Welch Fusiliers. It turns out that all the Royal Welch Fusilier goats are called William
of Windsor (Billy for short). They have a ration of cigarettes and
Guinness (the goats eat, rather than smoke, the cigarettes), can move up
the ranks, are saluted, and wear ceremonial dress when in parade. It is
said that the use of goats as members of the military started after a
wild one wandered about the battlefield during the American
Revolutionary War in 1775, seemingly leading the Welsh regimental
colours to victory at the Siege of Boston.http://blogs.scientificamerican.com/tetrapod-zoology/2011/11/11/military-goats/
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Wow! thanks so much for the interesting info about the Royal Welsh Qatar goats! Just looking at them you know they are a VERY unusual animal. I love that they get their own ration of cigarettes, which they eat, lol. thanks to Deuce and his goings on, I have to say I am learning a lot about goats! They really have a lot more personality than I ever guessed, If I could keep a goat here, I think I'd love to have one as a pet.
So, Teri, if you agree to provide ceremonial dress for Deuce, promise to salute him, and give him a daily ration of cigarettes, do you think he would give in and come home?
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I have learned more about goats on this thread.. off the wall information! Who would have thought!
I hope you have moved on to a better doc and better attention to your symptoms and relief! Wishing you a good breathe easy day with no pain. Hugs.
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:-) Judie, you made me laugh!! Maybe Deuce is also holding out for a trough full of Guinness?! :-)
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JustJudie, Deuce will be lucky that I don't kick him in the arse if he ever shows up again! Give him beer and cigs? Maybe for me. I'm the one going nuts. very funny stuff here girls. It lifted my mood about 50 feet. Only a couple hundred more to go. My Dr. appt this afternoon should hopefully do that.
I hope you all are having low side effects and no pain on this lovely day-after-my-Seahawks-won-the-Superbowl day! I send you all my love and support.
Teri
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Not a goat, but so beautiful that it was a must-share with all animal lovers.
"This is my favorite photo in the world - me and Linus, born to a dairy cow and ordered to be killed when the farmer saw he was a male (and thus useless in the dairy industry).
A compassionate individual intervened, and he was brought to a sanctuary. I met him when he was a few days old and 60 pounds, and he would always try to sit on my lap. Today, seven years young and 1,500 pounds, he still tries to sit on my lap".From farmsanctuary.org
And for the Seahawks fan in you:
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That's the best animal photo above! LOVE IT!
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Glad to hear your are doing well. Sending prayers and hugs!
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Well, that photo pretty well summed up the Super Bowl. Teri, so glad your team won, and looked great doing it. Hope you get some good info from the doc today!
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Hi ya Teri! Well by now I am presuming your docs appointment is over but I'm reeeeeally hoping that it was productive for you and he has been able to give you some food for thought.
Keeping you in my thoughts and hoping for pain free and comfortable night for you.
Love n hugs. Chrissy
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good morning Teri!
It's early morning here, your appointment happened while I was sleeping, so I'm back to say I hope it went well and that you got some positive news!
Nicky
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Hi Teri,
Hope your appointment went well!
Laura
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Oh Teri waiting to hear. Hope all is well.
Donna
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Well we were not supposed to be getting snow but it's snowing like crazy. Light fluffy tiny flakes and they are just starting to stick. It's pretty to watch. Any snow up your way? We are at 500 feet elevation.
I hope you had encouraging news or at least straight forward honesty, some thing you can sink your teeth into. I hope your breathing is easier and no pain.
Cup of tea and a blanket to watch the snows flakes fall! stay warm. Cindi
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Teri, I hope your new doc was helpful.
Today I woke up feeling better than I have in months! So I got up and puttered around with a few chores, phone calls, got my calendar updated, and decided to take a rest NOW before I overdo. So taking a rest, thinking of all of you, hoping for good moments for each of you today.
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