The following anecdote is by James Bliwas from Ohio, a winner of the 2012 Costs of Care Essay contest. We at clearhealthcosts.com support the mission and the people at costsofcare.org, founded by Dr. Neel Shah of Boston, and are happy to reprint these essays with permission.
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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.
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From the essay contest sponsor, costsofcare.org: Patients and their caregivers are uniquely positioned to recognize inefficiency in the healthcare system but are seldom empowered with information they need to reduce harmful spending. With the help of New England Journal of Medicine Editor-in-Chief Jeffrey Drazen, former United States Secretary of Health and Human Services Donna Shalala, former White House advisor and bioethicist Zeke Emanuel, and New York Times columnist and surgeon Pauline Chen, Costs of Care (www.CostsOfCare.org) launched an innovative essay contest this Fall aimed at elucidating both the challenges and opportunities to save patients’ money with routine, cost-conscious medical decisions.
From Labor Day through November, Costs of Care gathered more than 150 personal stories from patients, nurses, and doctors across the nation.