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Thread: Hospice and My Insurance Company

  1. #1

    Thumbs down Hospice and My Insurance Company

    Well, hospice itself is pretty good. My lousy insurance is the pits. It seems they don't provide any medication, I have to go to the pharmacy and pick it up - all of it. They don't provide bandages/dressings, catheters....syringes. Things like that. I am limited to 40 nurse visits per calender year.

    So, I am going to get the hospice social worker here to see what we need to set up my "sick room" before hand so we're not blind sided when the time comes. Oh, and it's coming up faster than I care to know. My vitals are sinking, my awake time is dwindling to nothing, my skin is mottling, my temp is in the 96 range now.

    I'm just pissed off beyond belief that this insurance plan my husband's work picked is such a sucky piece of crap. Even when I called the insurance company to verify they don't cover this and that, the guy on the other end said he's never heard of an insurance company NOT cover these things.

    Just one more way to get you while you're vulnerable and probably don't matter since I'll be dead shortly and they don't give a tinker's damn what I feel like in the midst of this insanity. To say I'm mad is an understatement. We must have the lowest of the low in coverage. Crap. I'll give amazon my business and order it all by mail. My neighbor has a wheelchair and bedside commode left over from his wife. Think we're going to borrow them. One bright light in this sea of s&**t.
    Oct 2013 CT shows .7mm mass on tail of pancreas
    Mar 2014 CT shows 1.8mm
    Apr 2014 EUS FNA after 2nd opinion showed cancer
    May 16, 2014 Open distal/splenectomy Stage 2B adenocarcinoma 3.1cm w/ local spread, clean nodes
    June 13, 2014 Baseline CT showed mets to liver, staged upped to 4, Will begin chemo June 20th Gemzar and Abraxane. Given 6m to a year.
    July 25, 2014 Happy Birthday to me! My tumor markers went from 212 to 32!!!!
    August 20, 2014 Pulmonary Emboli in both lungs, CT scan shows G/A combo not worth the side effects. Decided to stop chemo for now.
    Oct. 2014 CA19-9 now at 525, liver is swelling and so is pain.
    Dec. 2014 Started Hospice
    April, 2015 declining
    Blog

  2. #2
    I am so sorry you have to deal with this crap on top of everything else. The insurance companies are getting worse and worse they look at their customers as a burden rather than the one that keeps them in business because now if they suffer a financial loss they only need to contact the government to recoup their loss. I will keep you in my prayers.
    Weyland

    8-24-12 ER visit nausea and jaundice 8-25-12 pancreas, biopsy positive 9-19-12 Whipple procedure spots on liver, surgery stopped10-1-12 liver spots negative 10-10-12 New Whipple surgery pancreas tumor removed12-3-12 Chemo for 6 months. 7-3-13 Chemo complete 10-25-13 CT NED 12-3-13 CA19-9 went from 19 to 253 7-2014 PET positive for tumor at original whipple location right kidney blockage Right Kidney stent to bladder 7-7-14 start new chemo Folfirinox 10-22-14 PET shows tumor half the size
    12-16-14 Last of 12 chemo rounds 12-23-14 PET results NED 7-14-15 recurrence started back on Folfirinox 10-6-15 PET results NED CA19-9 in normal range last chemo 1-12-16 CT results NED CA19-9 in normal range CA19-9 4/25/16 CA19-9 rise to 514 restart Chemo Gemzar/Abraxane CT scan 4/29/16 Tumor return to original bed new spots on liver lung and stomach. 08/25/16 CA 19-9 865 09/08/16 CA 19-9 684 10-01-16 CA 19-9 464
    Fighting one day at a time. My faith is my guide

  3. #3
    Newbie Top User BobInBonita's Avatar
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    I also am so sorry that you're having to deal insurance on top of your own finality.

    Has your husband contacted his HR department? Since they are the ones who probably contracted your policy, sometimes they have some weight in things being reconsidered. His employer may be more interested in their reputation, and be willing to step in.

    It sounds like you are talking about in-home hospice care. Sometimes coverage is different for residential programs and for nursing facilities. Even though a skilled nursing home is more expensive, if the policy coverage is better, you might be better off financially there.

    I just read what I wrote, and simply can't believe that this kind of discussion has to take place in a supposedly civilized and developed area.

    Best of luck, and I hope the social worker has better ideas than I did.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  4. #4
    Senior User
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    This is simply unfathomable.
    53 year old husband had:
    Aug 2013: Jaundice/change in stool and urine. Bile duct blocked.
    Sept 2013: ERCP. Stent put in. Biopsy negative.
    Oct 2013: 2nd biopsy positive. Adenocarcinoma. Borderline resectable.
    Nov 2013: Begin 11 rounds of Folfirinox. Stent fails; replaced.
    Mar 2014: Colostomy
    May 2014: Chemo complete. No change in tumor.
    Jun 2014: Commence 5 weeks of radiation. No change in tumor.
    Sep 2014: Colostomy reversal
    Nov 2014: Begin Gemzar/Abraxane.
    Feb 2015: CT shows tumor is stable. No growth, no mets.
    April 13, 2015: Almost bleeds out due to tear in hepatic artery. Stent dislodges. Placement of external biliary drain.
    January 2016: Cancer progressing. Resumes Folfirinox
    March 2016: Elects to stop treatment and begin hospice.
    April 24, 2016: His suffering ends as he passes peacefully.

  5. #5
    Senior User
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    Oh Emily - that is ridiculous! I'm so sorry you have to deal with this crap
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  6. #6
    Emily so sorry about to read about your issues with the insurance company. You've got enough to cope with without this added crap.. You're in my thoughts and prayers.
    Jane
    X
    Oct 12: Hubbie 57 stage 4 PC 4.7 cm tumor tail of pancreas mets to liver and peritoneum.
    Folfirinox 4 rounds - tumour shrunk to 2.7 cm
    7 rounds folfox severe neuropathy changed to folfiri.
    CT no evidence original tumour.
    Sep 13 chemo changed to gemzar /abraxane.
    Jan 14chemo break for 12 weeks- peripheral neuropathy in hands.
    Mar 14chemo break 8 more weeks.neuropathy no better. CT =enlarged lymph nodes chest area.
    May 14 ct showed 3cm tumor invading spleen. Folfiri recommended
    April 15 Folfiri not working. Tumour doubled in size since Jan! changed to gemzar/ abraxane
    July 15 more disease progression liver tumours increasing changed to folfox
    Sep 30th more progression lung, diaphragm and lymph nodes
    Oct 2015 treatment stopped. In gods hands now.
    Nov 2015 started home hospice
    Dec 6 chest infection
    Dec 18 admitted to hospice for pain control
    Dec 22 I brought my darling home where he wanted to be.
    Dec 26 Passed away peacefully. Forever in my heart. xx

  7. #7
    Bob, I too had the same thoughts and told my husband we may just do it - serves them right. Ticks me off since I had visions of being with my little shih-tzu and not so little lab at the end. Of course hubby too, but you know what I mean.
    Oct 2013 CT shows .7mm mass on tail of pancreas
    Mar 2014 CT shows 1.8mm
    Apr 2014 EUS FNA after 2nd opinion showed cancer
    May 16, 2014 Open distal/splenectomy Stage 2B adenocarcinoma 3.1cm w/ local spread, clean nodes
    June 13, 2014 Baseline CT showed mets to liver, staged upped to 4, Will begin chemo June 20th Gemzar and Abraxane. Given 6m to a year.
    July 25, 2014 Happy Birthday to me! My tumor markers went from 212 to 32!!!!
    August 20, 2014 Pulmonary Emboli in both lungs, CT scan shows G/A combo not worth the side effects. Decided to stop chemo for now.
    Oct. 2014 CA19-9 now at 525, liver is swelling and so is pain.
    Dec. 2014 Started Hospice
    April, 2015 declining
    Blog

  8. #8
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014
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    1,790
    It's so sad that you might have to give up on your wish for how this ends. I don't have extensive experience, but the residential hospices I've visited and some skilled nursing homes allow pet visitation. It still isn't home, but might make it homier for a few hours a day. Our little terrier mix wouldn't leave my mother's side as she approached the end (before hospice). We were able to bring her in to visit at the hospice several times. They seem to understand and care at a primal level - not to mention the comfort and unconditional love they give.

    I truly hope for a good resolution for this.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  9. #9
    This is beyond belief so very sorry for all your troubles......This should never happen in America....What the Heck.........
    Wish I had the answer for you and could make it better......Lots of Prayers and Hugs......

    carol~
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation

    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14
    3-12-15 Cancer is Back..Now in Hospice 4-10-15
    Passed on to Heaven 4-30-2015 Till you Hold me again...XOXO

  10. #10
    I too brought my dog in when my dad was in hospice because he wanted to see him. I just wish you didn't have to deal with any of this.
    Weyland

    8-24-12 ER visit nausea and jaundice 8-25-12 pancreas, biopsy positive 9-19-12 Whipple procedure spots on liver, surgery stopped10-1-12 liver spots negative 10-10-12 New Whipple surgery pancreas tumor removed12-3-12 Chemo for 6 months. 7-3-13 Chemo complete 10-25-13 CT NED 12-3-13 CA19-9 went from 19 to 253 7-2014 PET positive for tumor at original whipple location right kidney blockage Right Kidney stent to bladder 7-7-14 start new chemo Folfirinox 10-22-14 PET shows tumor half the size
    12-16-14 Last of 12 chemo rounds 12-23-14 PET results NED 7-14-15 recurrence started back on Folfirinox 10-6-15 PET results NED CA19-9 in normal range last chemo 1-12-16 CT results NED CA19-9 in normal range CA19-9 4/25/16 CA19-9 rise to 514 restart Chemo Gemzar/Abraxane CT scan 4/29/16 Tumor return to original bed new spots on liver lung and stomach. 08/25/16 CA 19-9 865 09/08/16 CA 19-9 684 10-01-16 CA 19-9 464
    Fighting one day at a time. My faith is my guide

 

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