Diagnosed with brain cancer: An insurer adds to the nightmare

When my 40-year old sister was diagnosed with terminal brain cancer, her one, overriding wish as the days ticked down was to die in her own home with her husband Steve and me sitting next to her, eating meals she liked that we cooked as opposed to coping with the institutional food she was being served, and for her three beloved cats to be lying on the bed with her.

It was a simple enough request, one that would comfort the patient and save medicine a lot of money.

There wasn’t anything that could be done for Janice medically so she didn’t need hospitalization. Because the tumor was on the brain’s interior, surgery was impossible and radiation did nothing to stop its growth. About all that her family practitioner and oncologist could do was show us how to manage her pain when it came.

Her hospital stay was costing more than $10,000 a day, and I was helping pay non-covered costs. Yet when Janice told her HMO she wanted to die at home and asked it to pick up the cost of a daily visit by a visiting nurse or health care aide, she was turned down cold because, the insurer said, her group policy didn’t cover the expense. The ludicrousness of the situation didn’t occur to the HMO: It was willing to pay up to one hundred thousand dollars for her to die in a hospital sometime over the next ten or 15 days, all that she was expected to live, but it wouldn’t cover a couple thousand for daily home care so she could die peacefully in her own bed.

For Janice, Steve and me, this simply added to the nightmare we were living. Only four months earlier, my sister was a healthy woman who held a junior executive position, volunteered in her community, puttered in her gardens, spent time with friends and family, and played with the cats. When she started feeling “off,” her doctor couldn’t figure out what was wrong and tested her for everything from Lyme’s Disease to fibromyalgia and most kinds of ailments in between. Running out of ideas, she sent Janice to an oncologist in sheer desperation. The specialist had her own difficulty finding what was causing Janice problems. Brain cancer was discovered almost by accident because its source was hidden from the battery of almost daily tests she was enduring; brain cancer almost always begins somewhere else in the body. In the end, the cancer’s origin never was located.

Now, just ten weeks after being diagnosed, Janice was preparing to die yet her HMO was making a painful situation as difficult as possible.

I phoned Janice’s physician who was furious and promised to call the HMO. I recall her saying, “Not only is this best for the patient, it’s a whole lot cheaper for the HMO!”

Meanwhile, nearly beside himself with rage, Steve called Janice’s employer and begged for help. Fortunately, she worked for a company consistently rated as a “best employer” in Minneapolis, the city where they lived. When the head of the benefits department notified a senior vice president what was happening, the executive swung into action.

First, he called Steve and assured him that if the HMO wouldn’t cover the cost, the company would. Then he phoned the insurer and raised holy hell, insisting that the business had been paying for a top of the line benefit plan and if the HMO would not take care of Janice’s needs, they would find a new carrier when the policy was up for renewal. But the HMO refused to relent.

In the end, Janice got to come home for her final eight days, thanks to the employer that covered the cost of a visiting RN who showed up every morning and the health care assistant who arrived each afternoon. She died quietly one afternoon in late July, four days after her birthday. Steve was holding her hand as I read a book aloud to her, and the three cats were sleeping next to Janice as she passed away.

I said a painful goodbye to my kid sister that afternoon and recalled holding her in my lap the day she was brought home as an infant. And I cursed a pound foolish insurer that did its best to increase everyone’s suffering in Janice’s final days.

James Bliwas is a winner of the 2012 Costs of Care Essay Contest.

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  • Maura69

    James, my heart cries for you, your sister and the family. How traumatic for all of you but this does show the lack of humanitarian response the HMO’s have. God bless you and your family and thank you for sharing this impossible story. Hopefully, when someone else asks they will listen.

  • http://www.facebook.com/dawn.forst Dawn Forst

    i noticed you said it wouldn;t pay for a home care nurse or aide but did they specifically ask for hospice most insurers will pay for hospice if it specifically asked for as such

    • NewMexicoRam

      Good point. Terrible, terrible situation, but the vast majority of insurers do cover hospice.

      • militarymedical

        In an ideal world, the HMO itself – knowing the patient’s condition and prognosis – would have been proactive in suggesting hospice care at home. But no; the drones cannot deviate from the algorithm.

        • bill10526

          As soon as the drones deviated from the algorithm someone would abuse the situation and then a lawyer would jump on the chance to fill his pockets should there be an adverse reaction.

          • militarymedical

            That’s a valid point, but it’s that risk-averse timidity and subsequent throwing the majority under the bus to accommodate the outlying ones and twos that got us into this predicament in the first place.

  • Lisa Miller

    Maura69 I don’t think insurance companies think in terms of humanitarian or not. Some of the sample adjusters that blithely allow great suffering without blinking an eye are same people that, if you were their neighbor, would do anything for you. That is the really scary part.

  • Bill Millan

    Why didn’t her Doctor send her home with enough
    pain killer to handle the problem? The Nurse coming in was doing
    nothing the family could not have done.

    • RockSci

      Control of cancer pain isn’t that simple, especially in the US where doctors aren’t allowed to prescribe diamorphine. Also, we don’t know what care the nurse was providing. End of life care can be complicated and difficult for someone who isn’t trained in it.

      James, thank you for sharing your experience, and I’m glad that in the end your sister did get to die at home.

  • http://www.facebook.com/people/Myles-Riner/100000936260954 Myles Riner

    You want to save someone else from this kind of abuse: NAME THE HMO!

    • http://www.facebook.com/jewel.markess.3 Jewel Markess

      I think this idiocy with paying for the expensive hospital stay and refusing to cover a visiting nurse isn’t just what HMOs do. Our government is similar too. When my mother who was in clinical trials of crizotinib for her lung cancer at a major cancer center, she developed infection in her pleural fluid (actually it was something that was probably there from before clinical trials and just slowly grew, but it’s beside the point). The (very expensive) hospital said that she needed IV antibiotics and could have them at home with visiting nurse coming; they thought it would be fine; however, Medicare said they don’t cover IV drugs at home. Since she wasn’t willing to give up the clinical trial drug that kept her lung cancer stable for months with hardly any side effects, hospice wouldn’t take her (most of them wouldn’t take her with her pleural catheter too). So Medicare paid for 3 week stay at a hospital in a major cancer center instead of paying a fraction of it for the nurse. Very smart. Of course, my mother would’ve been much more comfortable at home too (she passed away soon).

    • victoriacourt

      Yes! Please name the MHO!

  • Suzi Q 38

    i am so sorry for your loss, Mr. Bliwas.
    You were such a close family to care for her when she needed you.
    Insurance companies are like this, and it isn’t right.

  • Docbart

    I am sorry for your loss. Thank you for sharing that story with us.

    Perhaps a company that uses HMO coverage for its employees isn’t really “best”.

  • http://www.facebook.com/SarahWW Sarah Wells

    Name and shame.

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